Are fibromyalgia patients more susceptible to COVID-19? Do symptoms of COVID-19 last longer in fibromyalgia patients? The COVID vaccine lists side effects such as fatigue and body aches. Should fibro patients anticipate those side effects to be worse or last longer than in the average population? What advice do you have for managing the side effects?
Unfortunately, there is little to no proven information to provide answers to the questions you have asked. There is no data on whether or not people with FM are more susceptible to COVID-19. When speaking to people with FM who have gotten the virus, some of them experienced a relatively mild case, to others having the worst pain they have ever felt. It appears we are similar to the general population – there is no way (at least at this time) to know how the virus is going to affect a person with FM. There is some antidotal evidence that people who are on a biologic medicine like Embrel or Humira, tend to have less pain when they get COVID. Please stay safe and isolated – no one knows how the virus might effect you!
I have been in remission for about 3 years with only milder symptoms after coming off all the medication but I had the vaccine and it’s back with vengeance I’m hopeful it’s going to settle down but who can say
Can someone please tell me what their reactions were after receiving their first vaccination shot. I received my first 1/26/21. My fibromyalgia seems to be a lot worse. I’m afraid to get my second shot on 2/23/21. I live alone and I have no one I can call if I get worse.
The first shot: arm hurt for 24 hrs and body aches and headache very severe for two weeks. The 2nd shot: arm hurt for 24hrs. Next day fever, headache, severe pain all over my body. This continued until the second day where I felt a lot better. Third day my pain got worse. The weather was low pressure and that seems to make my body hurt every time. I got to go out to store early in the morning but couldn’t wait to get home to go to bed. Couldn’t do anything the rest of the day. Basically I consider myself to be healthy except for the fibromyalgia. It is more debilitating than the breast cancer I had 47 years ago. I really feel robbed of the years I have left to live. So many of the virus symptoms are so much like fibromyalgia. I tested negative four times since last March but I swear I had this virus last March.
I don’t know what to say.
I had dose #1 feb 1st.
Nothing special except tenderness in injection site the following day.
It lasted a few days. On day six I woke up to soreness in my underarm lymph nodes same side as injection. Lasted a week. I must say all over I am not feeling well, just aches all over, more than usual, sore throat, cold sores and lesions in my mouth. In two days I get dose # 2. I don’t think it will be without problem…. but what can be done? I want to get back to life outside the house. Enough about me. How are you doing now after dose # 2? I wish you all and only the very best.
I was very ill day after 2nd shot. Fever, headache, pain, second day I was just feeling my usual fibromyalgia aches and pain
I received my 2nd shot 2/23. My arm hurt from 4pm until the next afternoon. I slept with an ice pack all night so it wasn’t too bad. Wednesday I was very ill. I had heachache, fever, aches and pain. I had a terrible day. Thursday I just had my usual fibromyalgia aches. I was coughing and my cough meds help curtailing the symptoms. If we all have to take a booster, I won’t be happy.
I just received my COVID-19 vaccine 2days ago.. I have super pain in my injection arm and the rest of my body is hurting worse.. I have had fibromyalgia for at least 40 yrs.. I heard the 2nd vaccine could be worse.. it’s like a no win situation.. I’ll let you know if my symptoms get worse or if it lets up..
I had no reaction to the first Pfizer. Just had the second and my body really hurts. Better than getting covid. Prayers and extra strength arthritis tylenol are helping!
It’s been six weeks since my first shot. I do think it made my fibromyalgia symptoms much worse. I usually can get out to do errands when the pressure is high outside. That didn’t help this time. I had to force myself out just to get food, then back in bed. I was concerned that maybe I had the virus before I got my first shot, so I got tested……results negative. So much for that idea. I’m very achy and I feel a heaviness on my chest. I went to a specialist that took blood from me. Waiting to see him in three weeks. Just checking to make sure nothing else is going on with me. This is a “Damn if you do and damn if you don’t “ situation.. I do wish with all I’m going through, that I had more freedom after getting vaccinated. It seems that there are still restrictions involved. I guess it’s good to know that if I do get this virus, it won’t be as bad. All I can say, is stay well everybody and good luck.
I decided to get tested because it’s 12days since my 2nd shot. I still feeling very achy, headaches and coughing. I don’t want to eat or stand and cook. I got my negative results from the testing so at least I know I don’t have the virus. Going to new doctor tomorrow. Hoping to get some help. Can’t be in bed every day. My cat like it because he is cuddling up next to me all day. I think he thinks-he is my husband.
I also became quite ill after 2nd shot. Fever 101, chills, sweats, all over body pain, sore throat etc. This started 24 hours after shot and eased up after 18 hours. Today 48 post as just about fine except for my lower back. Frankly if I don’t soon get better I will go for a few ketamine infusions. They really helped about 2 years ago. I don’t have the patience to wait it out.
I got the one shot from j &j My muscle pain is way worse and i have a slight fever and have a migraine. Id still do it again. My son is 10 and on immunosuppressants.
24 hours after 2nd shot: 101 fever, All over body aches, Nausea, Sore throat, lower back pain etc.
It lasted 36 hours. Then joint pain in joints that have never been an issue. I felt like I needed hip replacement surgery.
Its now 6 days out back to pre vaccine state when not in mists of a flare-up. Tylenol was a great help.
Thank you all for your information!
I had my shot Thursday March 1st and I got a large bump at the injection site. It’s still swollen but not as sore. I have Fibromyalgia and I woke up the next morning feeling like I had the achy flu and a bad headache!
I am still not feeling good hoping to feel better next week. If you have anymore information please email me,
Sincerely Donna Huffman
Put ice on your arm. There is no doubt in my mind that people with fibromyalgia will feel extra strong symptoms. I took Tylenol and just rested. I watched meditation videos on Utube to keep as relaxed as possible. It’s still good to know that we are pretty much protected from getting the virus as long as we don’t careless. Hang in there, you will feel better
I received my first vaccine on 3/7/2021 and my Fibromyalgia flared up badly. I didn’t know if this was a side effect. I seem to always get the same answer, “Not enough data or studies to give a definite answer”. I am grateful to have found this site, not happy to hear that others with Fibro are experiencing similar symptoms, but happy that I am not the only one. I had to leave work early the next day after vaccine because I was extremely sluggish, and the pain and flare up were very debilitating to the point that I couldn’t do my work, I did call off work the next day. My entire body ached, but my neck and shoulders felt like they were on fire. I am dreading the 2nd shot.
I’m 64 with fibromyalgia for 20 years. Had first dose of Moderna vac. Sore arm for 48 hours and what feels like fibro flare. One or the other or combo? I know if I have an insult somewhere on body, ie hold a baby too long, arm and shoulder pain causes all over pain.
It’s been six weeks since my first shot on January 26,2021. I’m still feeling extra fibromyalgia symptoms. I’m going to see my heart doctor on Friday because I don’t like the pressure I’m feeling in my chest. My heart also was beating a mile a minute. That never happened to me. I’m just making sure nothing is else is going on with me. I guess I’m getting paranoid. I sure wish the Health specialists knew more about the side effects for people with fibromyalgia. I think we are on our own. Don’t forget to use ice for sore arms.
I had a Pfizer shot yesterday. I’m 59 and I’ve had fibro for 30+ years. Usually I have most symptoms under control. I’m grateful for the vaccine but I I’m feeling like crap today. It is making me dread the 2nd dose.
It seems we are all feeling extra fibromyalgia symptoms. Please don’t be afraid of getting the second shot. You probably will only feel really uncomfortable the day after. Just use the ice on your arms and Tylenol for fever. After the first two days, u may feel like your fibromyalgia is worse. It probably will be although everyone is different. Don’t panic like me….anything is better than that mean old virus. This too shall pass….hang in there.
You are 100% correct.
It was a bad 36 to 48 hours but nothing compared to actually getting covid and most probably end up in the 30% of “long haulers”.
Monday is 2 weeks after 2nd dose. Am off to visit Beaufort and its history, eat in restaurants etc. Am thrilled!!!
Hello I am new to this group.
I am scheduled to get my first shot march 30, still scared but like so many of you have said ” damn if you do and damn if you don’t”!
I am 58 diagnosis Fibromyalgia 30 years ago. I am a prayerful Person and I prayed for weeks about the vaccine?? Talked to my doctor he still recommended me to get it, my daughter is an RN and of course she wants me to get it along with my husband too! I work part time a floral designer for six years, some good changes of opportunities come my way at work soon and I feeling so scare that not knowing what the outcome of getting this shot, and how it could affect the fibro ? And how long of a flare up lasts? Like the rest of you out there this damn fibro has robbed me of so many things in my life, and I don’t want to go through loosing my job opportunities that are awaiting for me !! I have worked hard to get where I am now! Sorry didn’t mean to go on and on! Hope you all are feeling much better today.
Scared and worried
To Sheri Crawford… don’t be afraid of getting this vaccination. Getting this horrible virus will be much worse than the few uncomfortable days that u may experience some side effects. While everyone is different, we all are experiencing a little more symptoms with our fibromyalgia. Do what u can to relax and stay positive. I watched music meditation videos on Utube. I was going thru a lot of stress besides this vaccination and fibromyalgia. My family all had to move away because of job loss. I’m alone and I’m sure that’s what made me more stressful. I’m going great and I’m very glad I got vaccinated. I learned that controlling our thought really helps to feel better and unfearful. I really learned a lot and I’m much stronger. I have faith you will be ok. Keep praying, we definitely get Spiritual help when we ask.
Let us all know how you are feeling
Louise, please be very cautious. There are still restrictions in what we can do. Have a good time but don’t go crazy
I had the Pfizer vaccine 3 days ago and feel extreme pain aftershot number 1. I don’t want to scare anyone away from getting the vaccine but go in with your eyes open.
Thank you Barbara, I appreciate your concern.
I plan on no more than four hours of sightseeing per day. The rest will be rest. Its been a year of living full time with my ASD husband. I need a break! Frankly I believe my fibromyalgia is in great part due to the difficulty of living with someone “on the spectrum”.
Anyway am back to baseline and encourage the vaccine even to those of us with fibromyalgia. I really feared if I contracted covid I would be one of the 30% that don’t recover completely.
Thank you again Barbara,
Can someone please tell me why I cannot see any of the responses on this post after Barbara Corak’s two weeks ago? I get emails with the new responses but when I go to the website I cannot see them.
I was told not to take any meds before shot, but I don’t understand what or why.
JoAnne they say not to take any meds before you get a shot. So please don’t take anything. They also recommend taking just Tylenol after. We all are having problems but not getting this virus is top priority.
hi had my 1st vaccine oxford 7 days ago itched like hell for 24hours then was achy and a sore arm to move ect ,but after 3 days could hardly walk with extreme.fatigue worse I have ever experienced in my life.Im 59 but have had fybro for 7 years.Having occasional times of feeling off balance and drunk without a drop.
I’ve had fibromyalgia for over 20 years. I’m still learning what flares me up, etc. My instincts told me not to get the vaccine. But! I signed up for the vaccine because I don’t want to be the person who passes it on to others. I received my first Moderna shot last Friday afternoon. By Friday evening my body went into total flare up. Breast, and ribs ached. Gas and belching, not to mention air in my esophagus. I was in so much pain, I had to take two some serious pain pills. I’m reluctant about taking the second shot. Someone suggested taking the same pill that I took before taking the second shot. I’m welcoming your feedback.
Lorraine…we all have been going through some tough times with our fibromyalgia in regard to these side effects. I got both shots and even though my fibromyalgia symptoms were worse it is better than what could happen to us if we get this virus or the new mutation. I hope you decide to get the 2nd shot to protect yourself…this isn’t over yet.
It’s been three weeks since first Moderna shot still in extreme flare am not going through with second shot,spoke with doctor and she agreed.Can’t risk worse flare,struggling with fibromyalgia pain and burning in body and eyes.
Not much medical research has been written about the effects of covid vaccinations on people with fibromyalgia, so I thought I’d share my experience.
I’ve had manageable fibromyalgia for over 30 years (I take Celexa and Trazodone at bedtime). No symptoms after 1st moderna covid vaccine other than a sore arm.
Unfortunately, I’ve had an extended period of symptoms following the second vaccination. A flare up of all my fibro symptoms, some of which I had long forgotten about. Yesterday was the 4th day and I still experienced some fibro symptoms and had chills and a low fever broke last night after taking extra strength Tylenol.
So far today, day 5, things seem to have improved.
Everyone is different, but don’t be surprised if you experience an increase in your fibro symptoms following the vaccine. It’s still better than the risk of getting Covid.
Hi everyone. Got my 1st shot had a sore arm no biggie. Got 2nd shot on March 22nd I spent the following day in bed all day. I was very achy. It’s now the 2nd morning after and I feel like myself. I encourage everyone to plan accordingly rest the day after.
I am 74 w/fibromyalgis for 23 years. No vaccine symptoms until 9 days after 1st Moderna. Heart racing, chest heavy sometimes and extreme fatigue off and on like a fibro flare-up for last 2 days. 2nd guessing 2nd shot in 2-1/2 weeks. No fever, no headaches, no unusual soreness.
I have had fibromyalgia for about forty years. The end of February 2020 I went to the emergency room they tested for Flu-negative said it must be a virus.Extremely ill for over a month.Fibro flare beyond anything I ever experienced in the forty years of Fibromyalgia.January really feeling better,lasted until my first injection on March second.Injection was extremely painful,arm didn’t hurt until the next day.Swollen ,red and painful for about a week,fatigue and a little more fibromyalgia pain,then felt better.Day ten woke up with arm red and painful all over again and fibromyalgia pain is almost unbearable at times. I have an appointment with my doctor tomorrow, I know that she can’t do anything to help but I think that it’s important to report our experiences. I am worried about my second injection.
I got my first shot of Moderna on 3/15. It has now been one week, and I am still bed-ridden. About 30 minutes after my shot I had a bad stinging sensation in my arm. Normal fibro pains and malaise came on pretty strong after that. Rushed TO ER that same night due to light-headedness and not being able to focus on anything/open my eyes. I haven’t been able to do normal daily activities without extreme fatigue or feel like I am going to faint. I have never had bad brain fog, but it’s like my brain stops working, and I cannot focus or comprehend anything. In the hospital I didn’t know where I was until they gave me a pain killer and antihistamine. I am 35 and have had Fibromyalgia for 22 years. I am obese, but not morbidly. I am having some slight chest pains and low heart rate on and off. Fever near 100 comes and goes even 1 week out. The fibro pain is gone/normal and not bad, it is the cognitive function that is lacking and having zero energy that is keeping me worried to get the second shot and bed ridden still a week later.
I just got the second phizer shot about 48 hours ago. The first shot I had severe pain around the arm that got jabbed, worse joint aches, extreme fatigue and headache that went away after 48 hours. After the second shot I came home and immediately slept for 18 hours and have been mostly bedridden. I was so exhausted I could not talk. That’s never happened to me before. I have severe pain all over my body like a sunburn that even goes to the bottoms of my feet which makes standing so painful. Racing heart, headache , severe joint pain in unusual places. Muscle weakness. Still extreme fatigue though I can talk now. I had a slight fever that seems to have abated. Sinus problems, loss of appetite, trouble walking. I live alone with my cat and frankly if I could call someone to come over and help care for me, I would. I am still in favor of vaccines, I just didn’t anticipate symptoms like this. They do seem to be lightening up though. I have fibromyalgia, hashimotos, stage 4 Epstein Barr for reference. I started doing a deep dive to see if others experience similar symptoms and the answer seems to be a resounding yes. I wish you luck and would recommend having a friend at the ready in case you need help. A kindred soul-
Basically, I have not had a good day since my last shot on2/23. I now realize, how grateful I am that I never got the virus because I would never had made it alive. So even though I’m still achy, I’m very appreciative for the vaccination. Hang in there everyone.
I’ve had Fibromyalgia for 10+ years. I had a flare after my first shot and thought it was a coincidence. Second shot was yesterday and this flare is twice as bad, lots of pain!! BUT, no regrets! My doctor said I had a much better chance of surviving the shot then the virus and I agree! Get your shot(s) as soon as you can!!
Just got my second shot on Wed 3/17, the first two weeks before. Arm pain and a little extra tired the next day. Day after second dose was spent entirely in bed with pain all over my upper body and increased fibro pain all over. Last night my injection side arm is extremely painful and my lymphnode under arm are so swollen and painfull i cant lower my arm or lay on that side. Ugh!!! Glad i got it but damn this sucks.
I am 50 and scheduled to get my first Phizer shot on Wednesday. Has everyone recovered ok from their vaccinations? The flu vaccine put me in bed for 2 days a few years ago so I’m a little apprehensive but I do believe it’s best to get vaccinated for covid.
I had the Pfizer vaccine, the first shot was this past Saturday, next day I had soreness in my arm which I expected and a terrible headache on the side of the vaccine. Monday I felt better but since Tuesday I feel like a real bad Fibromyalgia episode. Not looking forward to the second one but I know I have to get it. thank you for your posts, it helps to know that we are not alone.
I know many people who have contracted Covid-19 and many compared it to the commmon cold/flu. Out of the 10 people I know only 2 were sick for 3 weeks, the others were fine after a few days. I don’t plan on taking the vaccine and wont take it for several reasons. The vaccine does not protect you from contracting the virus, you can still contract it. it might lesson the symptoms but even that is not guaranteed. the second reason is liability issues if something severe happens to you the vaccine manufacturers are fully immune from liability. Third many people don’t know that taking the covid vaccine can nullify your life insurance policy if something happens to you. I highly suggest you call your life insurance provider and ask if you are still covered in the event you end up dead from the vaccine.Fourth I have gone a whole entire year without contracting this virus and if I can go one year I will take my chances. This is not an Ebola, your survival rate according to the numbers of infected and the number of death is 98%. Many people I have spoken to have had extreme adverse effects after taking the second dose. All of them wish they didn’t take the vaccine. I hope you all get better and feel better soon.
Rhôni….I know how you feel but remember if you were to get this virus, you would be not only in more pain but it could be fatal to u. We all are going through some extra uncomfortableness but it is definitely worth it.
Rhôni….I know how you feel but remember if you were to get this virus, you would be not only in more pain but it could be fatal to u. We all are going through some extra uncomfortableness but it is definitely worth it.
Brian , we all know how you feel. It seems all of us are going through a heavy doze of symptoms. May I suggest u still get the second doze. You want to be protected against a virus that can be worse and even fatal. You will get thru this… hang in there. Do whatever you can to think positive thoughts and just rest. If u can watch meditation videos to relax. It’s hard … if u read all of our texts, u will see we are all going thru this. I’ve said in my text “damn if u do and damn if u don’t “. Nothing has been pleasant this whole year. Actually I feel a lot of our symptoms are very much like this virus. Make sure u use ice and take Tylenol. Good luck
Got the first Moderna jab 17 days ago. It has caused a horrible fibro flare. After light workouts my muscles hurt all over as if I were pushing a truck. The day after a light workout I feel exhausted. Neck hurts. Arms hurt. And, get this, my teeth hurt (which happens to me after certain meds). I am seriously wondering when I will feel better. Seventeen days of feeling bad. I may blow off getting the second shot…
I’m 57 years old and have fibromyalgia. After reading these posts, I’m pretty scared to get my vaccinations. The flu shot gives me pretty bad flare ups. Yikes!
I was diagnosed with fibro 5 years ago. I got my J&J vaccine on Saturday. That night I felt body aches and by Sunday morning I felt worse. My arm feels sore, I have a horrible headache, some nausea, body aches, and fatigue. I feel the shot triggered a flare up and the weather hasn’t helped. I am hoping to feel better by tomorrow but even if it takes more days, I am glad I could get the vaccine. I cannot imagine how having a severe case of COVID must feel. Thanks for your posts! I feel I’m not the only one.
I have not had a covid shot yet. They are not to my age group yet. Although with all of my underlying conditions Im eligible for the shot. I’m trying to decide which one would be better because of fibro I am very scared of taking the shot for fear of making fibro even worse and I am almost to the point of not being able to get out of bed with fibro fatigue and pain as it already is. If anyone’s doc says which shot may be best please share on here. Moderna and phizer are made the same way and J and J totally different. In GA we can tell which shot we are signing up for by looking at good RX. So depending on if I wait a little bit I will have some choice.
I got my first shot the end of February get my second the 30 th of this month. My harm hurt so bad the fist day I couldn’t lift it I used ice and heat and exercised it. It got better the 3rd day. But I’ve been so sleepy tired and achy even headaches which I very seldom have. I just feel like I can’t do anything I just sit around and sleep that’s not something I do. Hopefully the 2nd one leaves me with some energy anyway good luck everyone hope we all do well!
Has anyone heard about or had experience with the Johnson & Johnson vaccine? I’m wondering if one shot might be easier for fibro folks to tolerate
I can now see we all are having a little more side effects having fibromyalgia than most people who don’t. I am finally feeling much better. What I realized is .. it’s very important not to resist the discomfort. The more negative energy we use to resist our pain, the worse it gets. If possible, besides the ice and any other meds, think positive thoughts. Watch what you r thinking and switch any negative thoughts to thoughts that make u smile. I know that’s a challenge when you feel so badly. Play a game with yourselves. Remember getting this virus would be much worse. I watched mediation and nature videos. I also watch Law of Attraction videos. Fibromyalgia is very debilitating but I’m beginning to think if I don’t plug into “what is” and I keep and pretend I’m feeling good, I can turn the tide. The Bible tells us to do just that. Just go with the flow and use your thought to feel better. I made myself worse this month because I was so afraid and thinking scary thoughts. Try it you may like
I got my first Moderna shot two days ago. Just pain in arm next day, and slight headache, on second day and I hurt all over, and tension in my back making issues I’m currently having there worse. I thought it might be flaring my fibro, and while this does SUCK, I’m relieved to know I’m not alone. Now I’m apprehensive about the second injection. Worth it to get to hug my elderly parents again. I’ll just make sure my schedule is light following the second injection.
Letty…if u read all our email answers, you will see that we all are having uncomfortable side effects. But when u really think about it, getting this terrible virus would have probably put us in worse shape and maybe even fatal. Just make sure you use the ice on your arms and take Tylenol. Just rest and make the best of it. This too shall pass. We are all feeling the effects. Hang in there.
I just got the 1st dose of the Moderna vaccine yesterday. This morning I had chills, body ache, headache and diarrhea. I can barely move, my ankles and wrists seem to be hurting more. I’m taking Tylenol to relieve the symptoms, it seems to be working. I hope this doesn’t last too long.
To all those out there who have fibromyalgia, I also have it and have had it for 16 years. I just had my first Moderna shot yesterday, on March 11. My arm hurt and there was some swelling last night and today, so far. I iced it on and off yesterday but it didn’t seem to help much. I’m hoping the pain goes away soon. I didn’t take any painkillers last night or today but I am thinking about maybe taking a couple of Tylenol’s tonight. Like all of you, I am dreading the second shot with some additional side effects. I believe that for those of us who have the misfortune of having to live with fibromyalgia, we do feel pain more than others. I pray a lot, and that is what has helped me endure all the rough times I have been through with this miserable affliction. I know prayer will get me through this, too. Hang in there, and like my mother used to say, “this too shall pass”.
To everyone who is concerned with the second shot….yes it might be uncomfortable for awhile but the virus will be worse and could be deadly. Like I said before,“damn if we do and damn if we don’t”. Hang in there everyone, we all will get thru this.
I just got my second Pfizer vaccine at 8am today and was fine until 9pm, then suddenly I got a bad heache, nausea, and horrible chills that I couldn’t shake. I couldn’t take my temp, because my digital thermometer had a dead battery. Now it’s the middle.of the night, and no shivers, but nausea, head ache, dizziness, and horrible muscle pain. This was worse than the first shot.
I got my first shot 2/26, arm minor soreness and no other side effects. Second shot, 3/26 sent my fibro into high gear! Up all night, Tylenol, bath, heat and ice, yet nothing helped.Sever, sever pain, muscle aches, headache, slight nausea. But was it COVID side effects, fibromyalgia flair up or both? I suffered for two full days and nights -third day better then fourth I was back to my normal fibro pain.
Would I do it again? You Bet! fibromyalgia sucks and offers me no cure but COVID offers me a shot with the possibility of of a cure, I’m rolling the dice.
I am not happy to hear other’s fibromyalgia flared after shot and yet glad to read these comments so I may understand myself better. Be safe my fellow fibromyalgia family.
I got my second Moderna shot 2 days ago, and after a horrible day yesterday, I’m feeling much better today. My arm is still sore and I’m still a little tired from lack of sleep, but I’m thinking by tomorrow I’ll be doing great! Definitely glad I got the shot. I would not want to get Covid.
Wow I am so glad I found this page. And scared to get the vaccine. I’ve had fibromyalgia for a decade. I’ve taken medication non related to fibro and if there is some strange reaction that less than 1% of the population gets while on it, I will be that person. I’m so so scared to get it as I’m going off meds now and I have turned a corner with my illness. I just don’t want to go back to that place of utter pain that there’s no way out of. You all understand I know.
I got a headache right after my first shot 4 days ago. Then my face tingled and felt like it was dropping but it wasn’t. I had a total reconstruction 20 years ago and it’s like having a cold that settles into all of your weak points..I had a mild fibromyalgia attack. I’ve had a couple of dizzy spells. My brain fog is something I never had before but I have it now. My teeth hurt!! It’s crazy but my teeth really hurt!! I don’t even want the. Second shot. I’m curious if I’m having a reaction to the chemicals in the shot rather then the vacc in general. We all seem to think this would happen to us if we got covid but what if we are actually having a reaction to the chemicals?? Ugh!
I am 75 and have had fibromyalgia for 10 years and CFS for 37 years. I also got covid February 2020 before we knew much about it and have had long haul symptoms since. As the Covid symptoms have gradually lessened, all my fibromyalgia pain and fatigue increased and the last 3 months I have had to lie in bed because of excruciating muscle spasms in my back caused by covid. I am just recovering from all this and am terrified of getting the vaccine. I keep changing my mind about what to do. I think it could take me another year to recover from the vaccine. I wonder if my symptoms are caused by an overactive immune system and the vaccine would just ramp it up again.
I just got my second Moderna shot yesterday. Just a few hours later the body aches and headache started. I hardly slept last night because my arm and lower back hurt so much. I was also nauseous. I got up at 3 am and took a tylenol and melatonin. I slept for a couple of hours. Sat up this morning and was very dizzy and nauseous. I went to the bathroom and then threw up a few times. SO much pain from head to toe. I’ve been taking tylenol day and still in quite a bit of pain. Keep getting shooting pains in my temples. Hopefully it’s better by tomorrow. As a 46 year old mother of 5, I can’t take too much time off. I’m glad I got it though, because if this is that bad I can only imagine what Covid would be like.
I got my first Pfizer shot Wednesday and only had a slight sore arm where the stick was on Thursday. I took my vitamin D as always that morning and tried to hydrate and stay calm. I don’t know if it was a difference maker but I definitely feel fortunate. I’m praying the second shot will go as well. Stay positive everyone.
To all of u just getting these shots….do not take any pain meds before your shots. Definitely not steroids. We all seem to be having more side effects since we have fibromyalgia. They will finally subside. Hang in there….the virus would have been at lot worse. I can’t believe that more information about what to expect was given to us. I’ve tried all day to reach different avenues to get this information out as to what to do and what to expect. Does the right know what the left is doing. Not one place helped me.
Hang in there Ester…fibromyalgia is very debilitating but this virus is worse. Use ice and Tylenol and try to think of pleasant thoughts to counter the bad experience. This too shall pass.
I’m patient of Fibromyalgia patient since I was 28 yrs for 20+ years I have been dealing and learning my body so I can predict my flare up seasons. My flares are from October thru Feb every year and I run 4 times a week 30 miles per week in my elliptical machine. People cannot believe that I have Fibromyalgia I’m also PTSD patient. Yesterday I had the Moderna 1st dosage. Even thought I told the nurse to not put the vaccine on my left arm because that is the arm that I have the most tendency for spams, she told me that is the arm they have to put it. After 6 hours I started the pain on my arm that goes up to my neck and my chest. Before I went to bed I check my arm it was red. During the night I could not sleep because the pain woke me up several time during the night even thought I took may muscle relaxant Flexeril. Today I cannot lift up my arm. I hope I don’t get more symptoms. But definitely if we want to go back to have some normality we have to get that herd immunization.
Tara…I just read your remarks. The people who are telling us what to do , says not to take anything before your shots. No meds….after the shots only Tylenol. I think you might want to call CDC or some other resources before u take steroids. I’m on steroids 40mg because I have asthma. The side effects of steroids is not fun either and will only add to any discomfort you may have from the vaccine. Please get better advice. We all have had some discomfort but anything we go through is better than this virus. I’m not a doctor but with all that I’ve gone through in my many many years, I have learned to be safe rather than sorry. Try to have positive happy thoughts and actions and anything your experience will not last for ever. Good luck
It’s been three weeks since my first Moderna shot,three weeks of a debilitating fibromyalgia flare.Finally feeling better. I was considering not getting my second shot but after reading all these posts I am going to bite the bullet and make no plans for the following month,get my second shot on this coming Tuesday and protect myself and others from Covid.Please wish me well as I do also for all of you.
I’m scheduled to get my 1st Moderna vaccine on 3/29. I’ve been dealing with moderate to severe fibro pain for much of the year, but especially lately it has been worse than usual. My doctor gave me Prednisone 40mg to take before the vaccine, to reduce the chance of an allergic reaction (I had an anaphylactic reaction to food, and arm nerve injury from allergy shots). Has anyone else heard of doing this? I’m hoping it might reduce any side effects by tamping down my immune system, but not so much that the vaccine does it’s job. I’ve finally got my fatigue levels and fibro fog under control, and don’t want to feel all around worse for who knows how long.
Some people say the vaccine has helped the symptoms of long-haul Covid. I have been fortunate to stay safe from Covid, had my first Moderna shot yesterday. Within an hour, I felt very fatigued and laid around all evening once we got home. Had to drive an hour for the shot. My arm started to ache last night and today I have fought some nausea and fatigue, various aches. I will get the second one on 4/24 because I want to see my Mother and kids and grandkids, although I will still mask for their sake.
Three weeks after my second Moderna vaccination, and my fibromyalgia (diagnosed by a rheumatologist in 1993) is much worse. Doing a bit of weeding and gardening that formerly I could handle stops me in my tracks, and causes huge flare ups. I also had a weird sore throat and bumps on my soft palate, as well as pain with swallowing. I am still experiencing some discomfort when swallowing. I hope that all this is temporary.
I can’t make heads or tails out of this forum so I can’t tell what comments go to what questions. Anyway Barbara I read that you said we shouldn’t take any pain medication before the vaccine? Do you know why they say this? I’m curious why that would make a difference. Also what forum does everyone go on for fibro support? I’m not on social media so I don’t know where I should go for support if someone can tell me I would appreciate it
I got my 2nd Pfizer on Tuesday March 31st. By Thursday I had painful lymph nodes all over and was super tired and achy fibro. Today is Monday and i’m feeling better. I don’t regret getting the vaccine.
First Moderna shot was not a problem other than a little sore spot on my arm. The day after my second shot I woke up with the worst pain over my entire body that I have ever experienced. Couldn’t walk. Couldn’t swallow. Could only whisper in short responses to the paramedics questions. My husband rushed me to local fire department and they put me in the ambulance and raced to the ER. IV fluids and monitors for several hours. When symptoms calmed down a bit, I was released. Three days later, I am better but still not 100%. Glad it’s over.
I am a 72yr. old woman with Fibromyalgia. Dx.1989. Appropriate weight (maybe a bit underweight). In fairly good shape and work out regularly. I take a fair amount of meds to keep my fibro symptoms at bay. Prozac/oxycodone/lyrica/klonopin/cbd oil.
Received my first Pfizer shot March 11, 2001. No symptoms … just a sore arm for a day or two. Yesterday April 1, 2021, I received my 2nd shot at 11:40 a.m. About 13 hours later about 1:00 a.m. (I was up late trying to stretch), the intensity of my fibro pain increased to a maddening level… I could hardly move, let alone sitting on the floor trying to stretch my hamstrings. I then began to tremble…hands were shaking and teeth chattering. I immediately rose from the floor (unbalanced) and turtle walked upstairs to the bedroom trying not to wake my hubby. My hands began to get very cold…I mean very cold. I was shaking uncontrollably. When Tommy (cat) jumped on the bed I started to cry while petting him
What was happening to me? Did the Pfizer vaccine affect my fibro?
I took the remainder of my meds, added blankets, engaged in deep breathing, Tommy warmed my cold hands, and then I finally fell asleep.
Now, as I type this I do feel better. This was a scary experience
I’m sooooooooo grateful to all of you who posted. I’ve been looking for information for over a year on how the vaccinations impact people with fibro. My Cytokine levels are chronically elevated, as are undoubtedly all of yours, and when I first read about Covid-19 causing Cytokine flooding and subsequent death in many patients my antenna went up. It’s the Cytokine response that causes the fever, pain, etc so I’ve been researching how the vaccines impact the Cytokine response . . . to no avail since no one seems to be studying over-reactive responses to the vaccines, only information available for people who are with suppressed immune systems. My doctor advised me to wait for the J&Johnson since it was one shot and closer in formulation to the “regular” flu vaccination. I’ve been clucking like a CHICKEN, fearing the vaccination and staying completely isolated. THANK YOU ALL again.
Maybe some good will come out of this horrendous Covid virus and Long-Covid will shed light – FINALLY – on fibromyalgia/ME!!!! Blessings to all of you.
Got first Moderna on March second.Had a very bad flare for three weeks.Considered not getting second shot,decided not a wise choice.Got second shot March 30th.First four days tough.One of the best decisions I could have made.Now I can hug and kiss all my grandchildren very soon.We are strong enough to do this, I am stronger than I thought I was!!
Had my first dose last night. Had occasional chills on and off during night. My FM has flared but not debilitating.
I haven’t been able to find any literature anywhere about pregnancy with fibromyalgia and the side effects of the vaccine. Does anyone have any leads??
I’m sorry I didn’t research this online a few weeks ago. Had my first Moderna shot almost 3 weeks ago and I went down for the count…major flare of both body aches and brain fog. It really depressed me as no one else I’ve spoken to had much of a reaction. My injection site was all hard and swollen and I felt icky on the way home. That night a high fever whole me up out of a fairly sound sleep. I seriously turned into Rip Van Winkle, slept for hours the first 2 weeks or so. Am coming around more this week which means I’m only a week and 1/2 away from the second injection…sigh, gulp! At least I know what to expect this time. Hard to know what’s right for each individual but if someone had told me I had to spread **** on toast to get to see my daughter, I think I probably would have done that, too. After 30 years of FM, I’m just sorry I kept wondering so long instead of trying to determine whether others were experiencing similar reactions. Thanks to all who are sharing so openly. Blessings!
Its been almost a week since my pfizer first dose and I still am not feeling well. Severe nausea with smells, joint and muscle pains, like a sinus head cold, chills, dizziness, fatigue. Im really scared for my second dose. But still feel it is better than getting covid.
I have had fibromyalgia for 20+ years. In November of this year, I had a light case of COVID, and I just got the J&J vaccine this morning. In both instances I had stabbing pains all over, body aches, and a fever of around 102-103 degrees. However, when I had COVID, I had terrible headaches, but my headache post vaccine is just annoying. I definitely won’t be going to work tomorrow— I can only lay in bed and am still in pain, but I am praying these side effects won’t linger.
Prayers for all of you!
I had severe pain and fatigue for almost four weeks after first shot (Moderna) and since second one on March 4th, I have had fevers, extreme fatigue and all over body pain that gets unbearable. It is still going on. I have had four decent days in two months I think, I can hardly move many days and those other days I cannot keep my eyes open. I have headaches daily as well.
So glad I found this site. It’s terrible having a weird fibro response to something and not being able to find any info or support. I had my second shot five days ago and while the pain is better I’m still having lingering side effects like diarrhea and really bad fibro fog. Just want to say my reaction confirms for me that we fibro folks really need this vaccine. The long haulers sound like they have something like fibro, so I was terrified if I got Covid it would leave me even worse off: double fibro! We do have the advantage of knowing how to be patient with ourselves and our symptoms, so hang in there, pray, meditate, try to stay positive! Also I recommend valerian root tea. Helps a lot with pain and sleep. Stay well everyone!
I had the Johnson and Johnson a little over 2 weeks ago. That night I had the chills and terrible body aches and low grade fever. That lasted about 2 days. But ever since my body has been so achey and skin is starting to get that burning feeling. I also notice my lymph nodes under both arms are sore and in my neck. My chest and breast are sore too. I feel I definitely am having a small flare. I feel like all my senses are heightened. I am glad I got the vaccine but hope to feel better soon. It’s been a few years since a major flare. Oh and also my stomach has been acting up too. Anyone else over 2 weeks out and having these symptoms?
I received the 1st dose of Pfizer on 3/30/2021. It has been a full week and my left shoulder has been especially sore all week, as well as being spasmodic. My heart has felt racy, I was dizzy at work monday morning. My least favorite side effect has been waking up covered in sweat while feeling cold. Cold sweats with the shivers and heat rash in uncomfortable spots. I am just generally feeling more drained that fibromyalgia usually has me feeling. And my joint pain has been at a steady 7 all week with medication not really doing a thing to help my symptoms ( not that they did much before, but now I think they were helping…)
The first vaccine caused mild arm tenderness for less then 24 hours. I had no other symptoms. I received my second Pfizer vaccine yesterday and it also caused mild arm tenderness. I was feeling a fibro flare-up coming on but decided to get my second vaccine anyway. My body aches all over but nothing unusual for a flare-up. I have not experienced any other side effects as of yet.
I had my 2nd Moderna shot yesterday and I swear I could feel the vaccine hit my bloodstream. I’m a 62 year old female, obese, and was determined to get the vaccination because I believe that in the long run, it will protect me AND the people I love or come into contact with. I had a hard time sleeping last night – nauseous, and hot/cold. Mid day today, my body seized up with pain I haven’t experienced in years. Mild fever, sore throat, some fog. I took Tylenol for the fever, muscle and joint pain (wow, really bad!) and Aleve too because I believe it helps me with my other aches and pains. I’m La-Z-Boy chair-bound for the time being. I firmly believe all the pain I am experiencing will be temporary and I’m proud of myself for toughing it out. Hoping tomorrow will be better day, if not, I won’t be surprised. I’m going to give myself a week — not going to worry if my pain sticks around. I’ve kind of expected the worse, so when it happens, it’s not a surprise. My love and hugs and support to you all. FM is no picnic, and in my case, is (temporarily?) causing a major flare. But I believe its worth it. Be brave, my friends. But do what your heart knows is right for you.
I received my first shot a month ago. Got my second shot 48 hours ago. I had a headache and felt like I had a virus with the first shot. I couldn’t stay on my feet. That lasted one day. Yesterday following the second shot by 18 hours I was up with a terrible headache. I read it’s recommended that you not take anything for the side effects because it can interfere with your body’s immune response to the vaccine. I would not have made it through this past 48 hours without Tylenol. My head hurt so bad that the body aches were nothing in comparison. I think the fibromyalgia is a factor in how your body will respond.
The first shot really didn’t affect me at all other than having a really sore arm for about a week. I just had the second shot 2 days ago, first day I was fine other than a sore arm, yesterday I was so sick. I felt like I was hit by a truck; body aches, muscle pain, joint pain, flu-like symptoms, fatigue, chills and a temperature of 102.1. I am feeling better today, still have muscle pain, lower back pain, slight headache, and fatigue. I seriously think the vaccine goes to any inflammation in your body and makes it feel worse, I had disc replacement surgery last year and it was unreal on how bad my neck felt.
Had my first Pfizer shot early March, a tiny soreness in my arm and swollen lymph nodes under same arm. Received second vaccine March 23 and have been going downhill. No immediate side effects but extremely sore in my joints and one week later had a terrible bout of vertigo, nausea, and then terrible brain “fog”. I am still extremely tired and achy and have swelling in the in my left leg which is the side I had the shot. I feel completely exhausted. I wish there had been trials in regards to the effects this vaccine would have on patients with pre-existing conditions. Does anyone know where these side effects can be reported?
If you are experiencing adverse reactions to the vaccine you should report it to VAERS https://vaers.hhs.gov/index.html Please gather information before taking the vaccine and understand your risks again your body has a 98.6 chance of fighting this virus.The risk is greater in taking the vaccine in my opinion, because there have not been sufficient clinical trials on various populations. Also, talk to people who have contracted the virus, ask them what it was like.For me personally, I’ve personally known more than 15 people now who have all contracted it many with preexisting conditions, who have said various things from not having symptoms to feeling like the flu just a little bit worse with body aches. None of them had to go to the hospital, and all felt better about 2 weeks to a month later.My heart goes out to all of you who have taken the vaccine, reading these comments saddens me, especially for us Fibro warriors who already endure so much pain on a daily basis.As for me I won’t be taking the vaccine after reading all these comments it’s verified my consensus of the risk is greater taking the vaccine than not for those of us with fibro. I hope all of you find comfort and feel better soon.
I’m 7 weeks out from the second Moderna shot and I’m wondering if the fatigue, muscle pain and depression will ever pass. I’ve had FM for 40 years and CFS for 15. The fatigue is similar to after major surgery. Haven’t been able to get my head together to cook, nor have I had the strength and brains to do so. I live in the mountains so spring is always hard with the constant winds and storms. I’m also a brain hemorrhage survivor—lost my right frontal lobe. I had serious suicidal thoughts on Easter weekend. Still, I would do the shots over again as I have good friends who are Covid long-haulers. To cope I’m sleeping a lot, reading easy, uplifting books, leaving more things to my hubby, taking note of the beautiful and praying. Gel hot packs really help on muscle spasms. Last night I had a long conversation with a meadowlark even though my whistling is lousy. Sit in the grass, watch for new spring growth, know you are loved.
Thank you both. I’m a bit relieved to know I’m not alone and I will report adverse reaction to the VAERS. I’ve already reported it on the Pfizer site. I’m often tired but this has thrown me for a loop. I work full time and it’s painful to get out of bed. Be well!
It’s been almost 3 weeks from my Moderna and I did not have any other symptoms besides the pain on my arm, dizziness and excessive red and dry peeling skin on my face. I hope that 2nd dose don’t hit me rally hard,
It definitely sent me into a severe flare up after my first shot. My arm was sore for a few days and felt like a slight flu/cold for a few days but now it has gone into a fibro flare for the last 2 weeks with horrible body aches, tender spots,headaches, stomach issues and zero energy. I haven’t had symptoms this severe in several years and I have had fibro for over 25 years and most of the time it is pretty manageable. Dreading my 2nd vaccine coming up this Thursday.
Just thought I would post a short update to my 2nd Moderna shot, which I had on Tuesday, and had a lousy day suffering on Wednesday. Happy to report am pretty much back to my “normal” FM feeling lousy, but doesn’t seem to be Moderna related anymore. My arm is still sore, but no big deal. I am still proud of myself for getting the vaccine. I had a few yucky days — watch out for the next day, it’s a doozy!– but all in all, I won’t tell anyone, FM or not, to avoid the vaccine. If anything else untoward happens, I’ll be sure to post again. Good thoughts to all of you out there!
I felt pretty good after my first Pfizer shot w/ a slightly sore arm at the injection site & fatigue directly after which the subsided by the next morning. I had a slight flareup with a headache for just a couple days after but nothing terrible.
My arm hurt for 24 hours after the 2nd shot. I was tired for a few days after, but could function. Yesterday was day 4, And I woke up with the worst fibromyalgia flareup I’ve had in years. It started on the side where am I shot was administered, left me debilitated me all day yesterday.Today it is all over my body and unbearable. None of the painkillers I took is helping or touching it, and I can barely get any relief for the heating pad or lidocaine. I will try the ice.
2nd Moderna vaccine 4 weeks ago. Sorry others are having flares but good to know the vaccines may be causing them. 70 years old with Fibromyalgia for over 20 years. I have been ill since the 2nd vaccine. My ANA is positive but nothing else in bloodwork. Discomfort, chills and racing heart. Worst of all is fatigue. Doctor just changed my med to Cymbalta so I am hoping for relief. There is so much unknown about the vaccine. This site is helpful and hopeful.
Got Moderna shot on 3/31/21. Fatigue on 2nd day. That night could not turn my head to the left. Severe ache/pain across shoulders and down both forearms and up the left side of my neck. Fatigue continued. Took about 5 days for it to ease off. But it rolled into seasonal allergies flaring and on/off hives underneath skin surface which could be reaction to shot too. Seeing allergist soon. I’m at Day 12. HAD been doing great and am off all FM meds too! Until this shot. Want to know how long this could linger. Very discouraging. Decided NOT to get the 2nd shot. They don’t know how long THIS round will last us.
I’ll take 70-80% coverage with first one and sit back and watch this all play out. Continuing CoVid safety protocol. Wish there was a way to have known—never would have taken the first shot. Best of luck to all.
My second shot was feb 19. It’s been just over two weeks. After the first shot I had two weeks of feeling great and feeling fibro symptoms, mixed and random. After the second shot, I have definitely felt generally unwell still. Oh I have had fibro for 20 years. Most my fibro symptoms had disappeared since switching to a vegan diet over nearly three years ago. But, since second shot I have had the burning muscle pains again when I barely do something active. It’s been depressing as I am worried the vaccine has brought my symptoms back. I hope it goes away. Okay also, the night of my second shot I had severe vomiting like never before. Wow. And the muscle pains lasted a couple days.
I received both shots and have Fibromyalgia. Here are my symptoms after both.
First Pfizer shot: sore arm for 24 hours, day 10 extreme lasting fatigue that kept me in bed, piercing & lasting headache, new moderate muscle pains in upper spine/upper back & left back leg.
2nd Pfizer Shot: Instant flare of upper spine/upper back pain, 24 hours later burning sensation in upper back, a week later mouth sores, left hip and back of leg pain, fatigue, 10 days later migraine, depression, brain fog.
20 days post 2nd shot I feel a bit better physically but have some lasting depression and lack of motivation. Haven’t been swimming in three weeks and finding it difficult to muster up the energy to exercise. Rheumatologist appt today. Doctor said that many of her fibro patients reporting delayed and lasting symptoms from vaccine that should dissipate in two weeks so expect to have some dissipating but lingering effects up to four weeks after second shot.
I received my 1st covid shot yesterday and felt ok, until last night. My arm started to hurt-no big deal. By midnight, I was in full fibro flare, migraine,nausea, pain throughout my body,exhausted, feel like I’m burning up, but thermometer says no fever. It’s awful!! But so was Covid!! I feel like we’re in a lose lose situation.
I have Fibromyalgia and my whole body has been in pain since the second shot. After my first day with the second shot I had awful brain fog, pain throughout my body. I slept for almost 3 days. That was the first week of February. Now it is April 14th and I had my Medical Massage Therapist try and work on my body. She cannot touch me in the sensitive Fibromyalgia spots it is to painful. I am 61 and feel like 81 with the pain and aches in my body. My heels have been bothering me and now where I had my Achilles tendon surgery years ago is burning like crazy! I am not one to fuss over myself when I have pain or I am uncomfortable. I tried doing Chair Yoga hoping it would help and I was a Yoga teacher till a year ago. I am at my wits end. Waking up in pain every single day is wearing on me. I just don’t see how it couldn’t be related. I feel like we that are experiencing long term affects are being ignored by the medical community and CDC, “the side effects will go away” they are NOT. What and where do we go to report the situation and get help.
I have had fibromyalgia for 10 years. Got the 1st moderna shot in March and 3 weeks later, April 13, I got the second shot. I had a sore upper arm for a week after the 1st shot. It wasn’t bad. I got my 2nd shot yesterday. When I got home I was tired and slept all afternoon and evening. When I got up around 5am to take my pills I could barely move. My entire body hurt. I hurt in places I never hurt before., thighs, hips, back shoulders and hands. The pain is so severe I could barely walk.I have found that fibromyalgia hurts more after having any type of procedures. Just having a shot hurts but whatever is in the Moderna shot has inflamed my whole body. Hopefully this won’t last long but the day after really makes your body hurt. Be prepared fellow friends who suffer from fibromyalgia this 2nd dose really hurts.
I am a 34 year old female who’s fibromyalgia has been in “remission”. Following the 2nd vaccine, I experienced fibromyalgia-like pain and increased joint pain for 2 1/2 months. At first, I did not attribute this to the vaccine and was worried that my fibromyalgia had come back. I am relieved to say that last week, this pain began to subside and I’m feeling hopeful.
Has anyone with fibromyalgia had the J&J vaccine and if so did you have any side effects?
Here is some good information also.
My first Pfizer shot just gave me a bit of a sore arm the next day and that was it. I was dreading my second shot based on posts. I took my vitamin D and drank water and I’m happy to report that I only had the same bit of a sore arm with the second shot also. I pray that this gives you all hope that some have little to no issues. Be well everyone!
The long awaited day is over. As I indicated before, I had a terrible flare up from my first Moderna shot. It was so bad I had to take a oxycodone pill to ease the pain. I took 1/2 of the pill and laid down and the other half six hours later. It did the job and I’m not a medication individual. I was advised to take two Aleve before taking my second shot. With that said: today I took two aleves after breakfast, wore my lidocaine patch and drank LOTS of water. It worked. I just took a long nap after the shot and am feeling great. To God be the glory. It is finished.
I have had fibromyalgia for almost 10 years and thought I was doing great until this past Saturday April 10th. I got the J&J shot because I wanted one and done it is day 6 and I am feeling like I did before taking medication. It’s like I don’t even take meds for this, I have made a name for mine it’s pelvic floor fibromyalgia, I am having a full blown flare up, spasms bladder spasms cramps it feels like I’m in labor. I refuse to let it take over so I keep on moving and working tho a spasm can hit me in the middle of a stride. I don’t know what else to take besides my leftover muscle relaxers Tylenol ibuprofen anything to help me move. I know it’s from the Johnson & Johnson shop because I slept for 24 hours on Sunday and passed out all day Saturday after the shot shot didn’t hurt but it drained me. I’ve never had covid my mom has and she was just fine after the Johnson & Johnson shot no I’m not worried about blood clots or anything else I’m 41 years old not childbearing and I have nothing else wrong with me besides fibromyalgia. I work in a healthcare setting I have people watching me so I’ll know if something is wrong but it’s expected in any kind of medication I just wish they wouldn’t let the media hype this whole Johnson & Johnson thing up and just let us be vaccinated. I want to go back to normal 😌
Saw allergist. Definitely a flare up of my allergies and fibro from the CoVid shot. 50% coverage with first shot, but no one knows how long/short it will carry you. Got hit hard all at once!! He said 10% of his patients had flare ups. Approx 4-6 week duration. Advised no more shots. Already made up my mind on that—he just confirmed it. Went from pain free to an 8 on a scale of 0-10, 10 being the worst. This is awful. I feel for everyone going through this trying, pain-filled time. Hopefully we have a light at the end of this tunnel. I’m not going back for more. I agree—go in with your eyes wide open. Had I any idea a flare up would hand occurred, I would have steered clear.
But to each his own.
Had both moderna shots fibro pain worse in my legs and hips, last injection February 13th, never lasted this long, guess it’s better then the virus, God bless all
Had my first Pfizer shot and I’m relieved- only a slight inflammation at injection site and more fatigued than usual. Otherwise all is well. My fear was based on all the comments from people who have had severe reactions. Talked to all my fibro-friends and luckily all their vaccinations disappeared in 2-4 days.
I have had Fibro for several years but have done quite well. I am 78. My 1st Moderna went fairly well just brain fog, some
dizziness & weakness. My 2nd Moderna vaccine was April 2nd – it has been an unpleasant experience. Tues. night (6th) I was
watching TV – it had been a normal day but at 9:00 p.m. I began feeling very sweaty (forehead, back of my hair was wet) – decided
to wash my face & cool down “but” suddenly I had severe vomiting and diarrhea which was harsh & scary. Afterwards, I was extremely cold – put on more clothes & slept in the recliner with 3 blankets. 19 days later I have canker sores, stomach issues, weakness but have gone to a bland diet, drink lots of water, eat TUMS and just maybe improving. When the vomiting & diarrhea hit so sudden, I was so “thankful” that I was at home. I did file a report with FDA/CDC at https://vaers.hhs.gov/reportevent.html
I certainly will not be getting any booster. Never did run a fever.
Got my 1st Pfizer shot April 22nd. No problem day 1 or 2. But then started with pain in my underarm same side as the injection. Then severe joint pain and back pain like I have never experienced. Yes I will get the 2nd shot but my FM is really bad and so much fatigue
I had my first Moderna a month ago. I am as hit immediately with fatigue that lasted about a day and a half and arm was sore. Then I started having dizziness and nausea. I think I posted that on here. Turns out it was wax buildup in my ear causing the off balance feeling and nausea. Once that was cleared up, I was fine. Had the second vaccine Saturday about 3:30 pm. All evening I kept feeling like I couldn’t catch my breath and felt panicky but I really think that was because I was so tense all day before I went. I slept good but when I woke up my arm was very sore. All day I was very tired and nauseous. At the 24 hour mark I got a bad headache that I took Advil for but it would not go away. This morning I woke up with no headache or nausea and arm has gotten better as the day went on. So for me, the side effects really did only last about 48 hours. Hopefully that is the end of it. I won’t get a booster for at least one year until they have more data and I will continue to wear my mask and practice social distancing inside. They told me, by May 9th, I will have 94% immunity.
I had my first Moderna shot 7 days ago. Haven’t had a flare in a very long time. Not to this point, anyway. My arm was swollen for the rest of the week and unuseable the first 24-48 hours after. I couldn’t pick up my grandson and was pretty miserable. Day 7 now, I’m in a full fibro flare I believe. I had forgotten how awful it can be. But I took one for the team!
Patty G. Good for you! Fibro is life ALTERING. Covid is life THREATENING. I too have been reluctant (and afraid of a flare) but am getting my second Pfizer this Saturday and will deal with what does and doesn’t come – just as I’ve been doing since 1995.
I am hoping everyone avails themselves of the vaccine. I know from experience how awful it is to deal with the sometimes long term side effects of it. I’ve seen the news stories of how they are suffering from this pandemic in India, and feel badly that they haven’t had the vaccine to take. Such misery.
Anyway, this is supposed to be supportive of you all. I wish I could hug each and every one of you. I could use some hugs, too.
So today is May 4 got the Johnson and Johnson shot it’s down little bit on the arm I massaged it it’s been about and hours and I got the shot feeling OK I will keep you posted
I had the moderna shot in April. I too have fibromyalgia. The first shot gave me a sore arm for a week. The second shot left me sleepy the day of and then the next day it hit me. I was so sore and in pain everywhere. Got a fever of 102. Felt bad for 3 days and after 3 weeks now my arm still feels sore. I still would recommend the vaccine. You are protected from getting Covid-19 badly and you are protecting other people from getting it from you. I was in pain for 3 days and my arm for 3 weeks but it’s better than being on a respirator and dying. We all need to get the vaccine to recover our country and get back to normal.
I’m 85 years old. I’ve had RA since 2011, and FM since about 2014. By regularly seeing my rheumatologist, and taking prescribed medications I’ve had few flare ups. However, I had my first Pfizer shot Feb. 6, and my second Feb. 27, and ever since that first shot, I’ve felt I was in a perpetual flare up. Especially at night, I sometimes ache so bad it’s hard to turn over. Right now my upper right arm aches so much I feel nauseated. I asked my rheumatologist about this flare up a couple months ago and he said, “there’s no known connection (between the shots and flare up).” I think he really meant there’s not enough data. Reading what you all have written is comforting. I mean I know I’m not alone. I have no regrets I got the vaccine as I agree with those that getting Covid might have been much worse. Barbara L
Patty Greenler – can’t find your comment on the feed but . . .
I too have had fibro/me for close to 30 years and have never had it under control. I too read all the comments and they scared me. However, I talked (in person) to several people I know (and my primary care doctor) who got the vaccination and they all had very tolerable reactions. I have been in complete isolation for over a year and decided to get the vaccination since the prospect of COVID is far more ominous than fibro. Had my first Pfizer and had a sore arm and increased fatigue for about a week. Will have my second shot this Saturday. There are suppliment suggestions to lesson a flare from Fibro doctors on the blog HEALTH RISING which is an excellent source of research and information
Check out this blog for doctors suggestions on supplements to minimize flares.
Health Rising – Finding Answers for Fibromyalgia and Chronic …https://www.healthrising.org
I think that people who are having minimal flares are largely not commenting here. I have talked to several fibro friends (and my doctor who has many fibro patients) who have had the vaccinations and were able to manage their flares. I’ve had fibro (not under control) for almost 30 years and have decided to take my second shot of Pfizer this Saturday (the flare after the first shot was manageable). I’ve been scared to take the vaccination but the possibility for hospitalization or death from Covid tip the scale.
Hi I just finished reading everybody’s comments thank you so much for posting I am still undecided as I have been dealing with fibromyalgia for over 20 years and I’m relatively in good health now with hardly any flareups I have scheduled for the Johnson and Johnson tomorrow and after reading everybody’s comments I think I might cancel my appointment I cannot stand pain as I’ve given birth to three children with no medication but other than that I do not cope with pain very well and to purposely invite these symptoms I think I’m just going to keep using my Covid protocol mask washing hands staying home…I look forward to the time when no one will ever have to say that they are sick amymore, Gods speed to you all!!!
Had my first shot last monday, Moderna. Just felt a little bit tired monday/tuesday, but that’s nothing special for me. In my arm I felt a bit pain, nothing special and it went away two days later. (Used some coldpacks and rubbing alcohol with Latschenkiefer).
The best experience for me since monday: absolutely NO Fibromyalgia pain anymore and especially NO muscle stiffness (what I had really bad and heavy) anymore. I feel completely new and somehow cured. This really could last the way it is! Let’s see what the future brings up.
First shot: short term soreness in arm.
Second shot: aching, chills, overall soreness throughout body , stiffness, severe fatigue, hard to stand from a sitting position, and walking isn’t easy. I had some Fibro fatigue coming on, but it was as if the vaccination activated the fibromyalgia.
Tomorrow Friday will be a week since I got my second shoot of Moderna and I’m still very sick from the side effects. I suffer from Fibromyalgia and the vaccine triggered this awful flare ! I have the worse body pain , nauseas and headache. Also affected my vision and up is hard for me to concentrate. Of course when they started the distribution most likely the team study the side effects from Moderna and they did not study exclusively people with Fibromyalgia and the Moderna vaccine…
I had my second Moderna on April 16th, I had flu like symptoms the first few days. I felt ok for few days, just tired, and now last 3 days I have fibro flare ups, pain, fatigue, brain fog, no motivation, heartburn, headache. I take Tylenol twice a day to relieve the pain.
I have had fibro for 11 years. I recently made the connection between having a flare after taking a supplement or medication with magnesium Stearate. I always thought that I reacted to Vit B or whatever supplement I took that made me ache after. After some investigation I have found that everything I reacted to had this filler. And it’s used in so many medications/supplements. So my concern in taking the vaccine is what if I react to whatever carrier they use for the vaccine? And what if it’s not the vaccine that’s causing everyone to flare but instead the other things in the vaccine? Magnesium Stearate isn’t harmful on its own, but when they use it as a filler the process that they use to get it in the medication is harmful. I’m just wondering out loud here and wanted to mention it in case anyone else has some thoughts. Just eliminating this has made a difference to me. Not hide but it’s enough to make me pause and wonder what if everyone is reacting to the fillers? And not the actual vaccine…
I’ve had both vaccines, the second one was April 24th. I had the Moderma one. I still don’t feel back to my Severe Fibromyalgia norm. I’m so lethargic, brain fog, no energy unless I take an energy bar but then I get insomnia. I’m waiting for this lethargy to break soon. My pain is already 8-9 & 24/7 but my pain is actually worse too. I did a load of laundry & felt like I needed a nap! Was totally exhausted & felt so weak. Ugh! Praying for all of you to feel better too!I’ve had FM for 19 years now, along with Arthritis in my left knee & Spondylitis ( Arthritis of the Spine)
Hi it Patty again so it’s Thursday night and Tuesday morning I received my j&j vaccine..feeling great been able to clean cook go to store…only side effect is a little sleepiness on Tuesday plus very thirsty, a little aches but nothing more than my regular fibromyalgia aches. I did have a tooth ache last night but gone today .no fever chills ect…I do have to say prior to my shot I prepared my system with vitamin C, b-complex, pau d Arco herb and fresh ginger shots before vaccine and everyday since…And no sugar or any junk food…And I prayed and prayed.
I received the Pfizer and the 1st shot cause a bit of fatigue but I was fine by the next day. I received the second shot yesterday at 5:30 pm…. it’s 4pm now and I’m in so much pain. Shooting pain throughout my body, aches, joint pain increased,pain behind my eyes and the base of my throat down to my chest feels a bit tight and scratchy. I’m seriously fatigued, hurts to sit, to sit still, to stand, to lay down, to walk and it has increased the sensitivity of my skin so I had to change into even softer clothes…. And the bruising pain that we spoonies have has also increased. I also have ddd and the pain in my neck and spine have definitely increased to the point that I don’t want to hold my head up. Yes, I’m pretty miserable but I’m sure covid is much much worse. I will be taking some kratom for pain, drinking an elderberry tea and laying on an xlarge heating pad for a while ☺.
I’m still sick , day 13 with extreme fatigue, joints pain, headaches and depression …my blood work showed abnormalities .. in the begging my primary doctor though this is Lyme but today my Rheumatologist did not think so, most likely a Fibromyalgia flare but she is also running more blood work to disregard another options like Rheumatoid Artritis or Lupos. I want this pain and discomfort to go way! I know I’m not the only one , praying for all of us 👏✨
I had my vaccine last month either the 14th or 15th, I’m having trouble remembering.
I knew I wasn’t alone in the side effects as my friends have different chronic conditions, but I have felt like I’m dragging a body filled with 100 lbs weights in body legs. I will still get my 2nd shot this month, but I can’t shake the fear of relapsing to my worse when my fibromyalgia flares first fully set in and those were really tough times as many of you have experience with, unfortunately.
It is equally comforting and heartbreaking tbh.
I haven’t suffered with this as long as many of you have, but I feel more fatigue now than I did after the first shot of Moderna.
I mainly suffered from injection site pain at first on the 1st day, but a few hours later my arms, wrists, and down to my fingers a fibro flare. It felt like electric currents and jolts of pain at random. Then when I was able to sleep that night, I felt super hot and didn’t realize I had a fever until the next morning when I checked and even with my night meds (I have a history of insomnia and MH illness, but even my meds couldn’t knock me out–it took 2 extra hours, when it takes an average of 20mins). The next day: fever, hot/cold chills, major fatigue, no appetite, rando fibro flares, and just overall…not well.
I’m 27, soon to be 28 y.o. and I’ve rather gotten “used” to my flares. I have an Dr. Appt. Next week with my neurologist, but I’m not sure if I’m going to hear the old speel, “Well we don’t have enough information or data to determine this vaccine is impacting or is the reason for your increased flares” or something similar.
My flares were at least somewhat managed before the vaccine and I can’t help, but feel defeated with the constant and non stop flares after somewhat having it managed. Having to take time of my new job because I can’t function right now in a productive manner and trying to keep my stress down or it makes the pain worse.
Making food for myself is a grueling chore and trying not to just grab the easiest thing that I can reach to eat and return to bed. Even trying to push myself to get up and use the bathroom is becoming a grueling chore.
Since where I live it’s in the low/mid 90s lately, the heat makes it worse. I thought about trying water therapy, like floating in the pool. I forget the actual term, but even that seems to be a, “Not now scenario” at least for today.
**This post turned out to be a rant more than an inquiry, it feels.
But I sincerely hope everyone’s condition improves, if you have been affected. Even if you are feeling nervous or fearful, like me and many other, I still implore you to still get the shot. I’m super nervous myself, but I know it’s necessary, unfortunate as it may be**
(I hope to find an online support group soon for fibromyalgia and/or my Occipital Neuralgia that may have been affected as well).
I am a 69 year old woman who has had fibromyalgia for 52 years. The first Moderna vaccination gave me the usual side effects plus loose stool and true diarrhea. I began to feel better after one week, but increased fatigue and increased body pain continued up until the second shot. The effects from the second shot were similar the first week, but more pronounced. It’s been a month since the second jab and I am dealing with increased body pain and the worse muscle fatigue I have ever experienced with this illness. Luckily, I don’t have to work. I exercise regularly-10 pound free weights, rowing machine, yoga-so the muscle weakness is not because of lack of exercise. I have confidence that this will pass, perhaps in three to six months at most, taking into consideration how long my severe flares can last after surgery, for instance. If I were to contract COVID 19, I am sure the long term effects from the illness would put me in bed for a year, or could be permanent. I’d rather suffer for months with the increased fibromyalgia pain and fatigue than risk years of problems from the illness itself. I have always had strong reactions to inoculations, since I was a child. I considered that issue before I got the COVID-19 shots, but it was no contest. I have too many memories of children ill with polio and red measles, and my grandmother describing her suffering with and surviving smallpox, and the deaths of her twin sisters from diphtheria . Vaccines work. COVID 19 can be a killer. It could make many of us fibromyalgia sufferers much worse.
I have also had flare ups after both 1 & 2 covid vcc
Diagnosed with Fibromyalgia
20 years ago, survived cancer 3 times
I just got my first Pfizer shot 5/11. I woke up in the middle of the night with my heart racing and feeling nauseous. Severe pain in injected arm. Chills. All over soreness. I’m med free and was diagnosed over 20 yrs ago. Im NOT looking forward to the second shot. I homeschool my daughter right now and it’s tough to even want to be up and about. 😩
So glad to have found this. I had the Moderna vaccine on 2/22/21 and eventually ended up having to go on medical leave due to running out of sick time. I, too, thought I got Covid before/during the shot because I had all the symptoms, including lack of taste/smell, but all the tests came back negative. It’s taken me about six weeks to come back to about 50% and I’m finally seeing light at the end of the tunnel.
I will be taking my second, probably in the next week or two, only because I have various activities/places that are insisting you are fully vaccinated. I’m hope waiting the extra time will help me not have as bad a flare up as the first shot but we’ll see. At least I’ll be able to recover at home immediately after. I kept trying to push through after the first shot and that only made things worse.
I did not want to admit it but second dose did give rise to flare up that 6 weeks later was still bothering me. Lower back, feet, ankles, left hip, right shoulder, wrists all painful,stiff,feeling overcome by arthritis I don’t have! Long story short last week I bit the bullet and went for a ketamine infusion. I walk like I have a normal body again. I know its extreme and I really dislike the infusions but they helped me 2 years ago when I was not doing well at all. It just stops the all over inflammation. Am going again tomorrow and hopefully that will be enough.
I got the 1st shot 5 weeks ago and fibro got the wrost of me 24 hours later it felt like poison took over my body and as of today the pain has gotten wrose I can’t deal with this amount of pain 24/7 I got the 2nd shot and felt sick after 12 hours but as of today I’m in the wrose pain ever if I can do it again I would not get the shot..
It was good to read that I am not the only one with fibromyalgia that had two of the worst flare ups of my life after my second Covid-19 vaccine. After the first shot I only noticed greater and longer lasting pain at the injection site arm, but I had the worst flare up of my life in my hip region after my second vaccination that lasted for a week on top of the flu like symptoms that lasted a few days. I then improved only to have an even worse flare up a week later from my left hip all the way down to my ankle. While that pain has dissipated a great deal, I still am experiencing more pain then normal. Today is May 12 and I got my second shot on February 21. My doctor does not know what to make of it. She ordered a bunch of blood tests, but I haven’t got the results yet.
Lois Ann and all who got the vaccine despite the nasty side effects, I totally agree with you. Last week I visited my rheumatologist, and he said he’s seeing some evidence that the shots cause flare-ups. And Lois Ann, I couldn’t agree more that the scientists need to find new and better treatments (and a cure?) for FM. Also last week, my doctor put me on the strict food plan that did help after I was diagnosed 10 years ago–no gluten, no sugar, no dairy. I DO feel better, but I’m not suggesting it, unless you’re desperate. Barbara
I don’t think any of us here doubt that the Covid-19 Vaccine is causing us all some really painful flare-ups.And of course the Doctors are behind the times on the vaccine and fibromyalgia. Seriously, I think they were just hoping to get a vaccine out there as soon as possible. The fact that they actually got a vaccine ready and WORKABLE in that short amount of time is pretty danged amazing! Now if they would just find some kind of a cure or vaccine or meds that actually helped with FM symptoms, instead of just throwing the same old Cymbalta, pain meds, and other non-cures at us. I am grateful to all who contributed to making this Covid vaccine a reality. And side effects galore or not, I was determined to get the shots. I did, it was miserable, now I’m back to (bad and crappy) normal. We gotta be thankful for the smallest to the biggest gifts. If the vaccine saves lives, I’m all for it.
My story is like Madeline’s story.
Our gut instinct is telling us the vaccine is causing these fibro flare ups even if th3 doctors won’t delve into more testing.
I am 76 years old and have had fibromyalgia for the past 16 plus years, and was fearful of the shots. After my first Moderna vaccine shot on April 9, my arm was sore but I kept icing it on and off that day. just as I always did after the flu shot. I also experienced tiredness that day and some body aches. My arm remained sore for about 5 or 6 more days. After my second shot, once again, I had a sore arm but that evening, I also felt cold with chills, but no fever and had to wear 2 or 3 layers of clothing. I took 2 extra strength Tylenol before I went to bed and the next morning I felt much better, no chills, just a sore are as usual. All in all, I feel fortunate that I did not experience any severe side effects of the shots. I have always prayed a lot and believe in the power of prayer, especially healing prayers. Wishing all of you better days with this painful affliction of fibromyalgia. At least we should feel comfort in knowing that with the vaccine shots we will not suffer any of the severe symptoms of Covid-19 that put so many people in the hospital and on ventilators. My prayers are with all of you out there. Stay safe and stay well.
I had first dose Moderna 4/10/21. Ended up with bronchitis. Body aches were horrible and coughing so much. Lasted about a week. Just got 2nd dose yesterday. My arm is sore at injection site. Tired and stretching a lot. Other than that I’m good.
I had my first Moderna shot on 4/25/2021, and I have had severe pain, fatigue, weakness, plus a headache, sore throat snd lack of appetite. I can barely function and these symptoms only seem to be getting worse over time. I am unable to engage in any exercise where before I could walk 3 miles a day. I will definitely not be getting my second shot for the time being. I feel like my life has been turned uoside down.
Hello, this is my second post. I have not gotten my second shot yet as I was to do so on Wednesday. The first shot knocked me down so bad that I am extremely worried it will be worse this time around. I have other health issues that I take a NSAID for. I had been told to stop taking them as it is doing damage now after years of using it. I was sick after the first shot on the 20th of April and finally gave in to taking my NSAIDS again. They have helped but I still feel like I am in Alaska and I am in Arizona!!!! Chills like none other. Body aches got better with activity but couldn’t do activities without the meds. I have not experienced Fibro like this in years. I stay active and that seems to keep mine in check most of the time. My next shot was next Wednesday. I am going out of town for the weekend following. I have a bad feeling about the second since I was so sick from the first so I rescheduled to Monday. My doctor told me she did not push the shot because of my Fibro. I didn’t know about all this till I came across this page. She said to really think about that second shot and make sure I have plenty of down time after! Wonderful!
Wow. Started searching as i lay on my sofa in excruciating pain, and attempting to recover from the worst flare ive ever had, every symptom imaginable, and weakness in legs, the tiredness and the brain fog is unbelievable. This is incredible that we are all feeling like this, had my 1st jab in March. This is the first bad flare up ive ever had, ended up at hospital monday thought i was dying. Lymph nodes are like golf balls in my ankles and neck, absolute agony all over x
I got my first shot of the vaccine Wednesday, May 12th and yesterday I felt extremely tired, fatigue, and body aching all over. My left arm and hand was in pain so bad like I had arthritis or something and that’s the arm I got my shot in. Today is just as bad, extremely fatigue and body aches. I haven’t felt like this since the beginning of my fibromyalgia days. I’m dreading getting the second shot now.
The first shot caused severe pain in my arm but I was still functional. The 2nd is causing hypersensitivity right now that has come alongside a fever, bad headache, excessive weakness and stiffness in my worst area. Hoping that the fever stops by tomorrow as I have a laparoscopy to help diagnose what might be causing my abdominal pain/ ibs. The arm pain is excruciating along the muscle where the vaccine was injected. I feel full on sick right now–it feels like a flare is starting. So exciting.
CDC Site is reading that if you had a non-emergency room allergic reaction to the Moderna or Pfizer shot,
DO NOT GET THE SECOND ONE!!
My fibro flare was deemed an an allergic reaction to the Moderna shot by an allergist. NO MORE.
I had my first Pfizer shot and all I had was some redness around the injection. No other symptoms. But when I got my second one a month ago, after sitting in the place for 30 minutes (because of my allergies) they let me leave. I walked to my car and I was so exhausted I had to sit in the car for another 30 minutes before I could drive myself home.
I have been in a constant flare since then, and have never been so tired as I have been since that second shot. I have taken ibuprofen and pain meds for the pain but every part of me feels sore, weak, and feeling extreme fatigue. This has been horrible!
It’s been 11 weeks since I got the J&J, I have had fibromyalgia for 34 years on disability for the last 10. I work two days a week 4 hour shifts just to make myself leave the house. I have been so much worse since getting the vaccine to the point of taking a leave from my job for a few months because I’ve been dropping things and my fibro fog is out of control. That being said I would get the vaccine again knowing all this because I think it’s important we all get vaccinated.
Iâve had fibro for about eight years. Still learning the ups and downs. Mines a little complicated with lupus and RA in the mix. Got the first vaccine about a month ago. My hands burned and itched for the first 24 hours, otherwise just a little tired afterwards for a few days. About a week later I got a dry cough and my chest felt heavy. Got a COVID test and it was negative. Using tessalon for my cough. Got the second vaccine about 10 days ago and felt fine afterward. Then a week later I get a flare with body wide pain, sensitive and itchy skin. I have prescription pain pills that help but I broke down and decided to do a prednisone taper. Anyone else have this delayed reaction? I hate taking prednisone but if I donât Iâll end up in the hospital unable to move because of the pain. This hasnât happened in a few years so itâs sucks to be back in a pain cycle. I guess thatâs life.
I had Covid in January 2020 and long Covid for more than a year after. I have fibromyalgia and received the first Pfizer shot on April 19th. I had absolutely no symptoms, in fact I felt much better after the first shot. I received the second shot on May 2nd and I have been feeling terrible for three weeks (and counting). I have never felt like this in my whole life—not even with actual Covid. I am
in terrible pain and unable to do anything.
2nd shot today. Instant dizzies and nausea. Brain fog and fatigue. Now about 3 hours out and I am sleepy enough to rest. Not sure what I will wake up to. Hopefully, the first was the worst for me. sigh. California bound this weekend too.
I had my second AstraZeneca vaccine yesterday. After the first vaccine I didn’t feel too bad. I feel terrible this time. I have fibromyalgia, inflammatory arthritis and chronic migraines. My body really hurts all over, I am so tired and washed out it’s hard to do anything. I also have an awful headache. Everything is just such an effort. I have to go back to work in a days time and I am very worried and scared about how I’ll manage, can not afford not to work. At this moment I haven’t got the energy to do anything. I’m so tired.
Hi all. Just checking in with a nearly 2 months-since-my-2nd-Moderna-shot-update.
I had a rotten, horrible flare up week after shot #2 in early April.(See earlier post of mine if you want details.) Some lingering aches and pains since then, some big time fatigue. But mostly I’m OK, and am continuing to read all your experiences. I do not regret getting either shot. I was adamant that I would go through with both shots — because I wanted to overcome my own fears and am convinced it helped me more than it was a hindrance — and it also led me to discover something I’d never even considered before. I finally tried THC/CBD combination 1:1 and wow does it help! I’ve never used the stuff my whole life. But that’s off topic, so — best wishes to all. We’re in this together.
Hi! I had my 2nd Moderna shot a month ago and ever since have had all my chronic health problems flare. This week got my period early and worst Fibro flare in 10 years. I have had the same reaction to all vaccines my entire life. I think it’s overreactive immune system and inflammation. Glad to know it’s not just me.
To Heidi, and all recent people who’ve shared. For most of us, even those with serious side effects, it was worth it to get the vaccine. I think we’d rather have these side effects than permanent long-term disability, or death from Covid.
I am so glad I come across this sites and thanks for sharing. I have flare up now and I am struggling should I get the shot or should I wait when over. I heard most of you guys had intense side effects. I am really scare especially not good now. Any advise?
Hi, Heidi. Hang in there! I am not as convinced that the vaccine (the second shot) is certainly the best choice for everyone. It wasn’t for me. I didn’t need to experience the worst month of my life—unable to walk, work or take care of my child—with very unclear results.Talk to your physician. I had Covid last year and I feel that this whole new ordeal was for nothing. I didn’t even develop long-term anti-bodies, which apparently is rather normal for most. Let me clarify that this is not an anti-vaccine stand. Far from it. But if you have reasons to be concerned, you do have every right to seek an approach that makes more sense to you.
I had my first pfizer shot on Saturday 6/3 had a bit if a sore arm for a couple of hours other than that I was fine until Monday lunchtime when a fibro flare floored me within hours all over body pain worse than I have ever had before lasted 16 days before I had any relief I was dreading 2nd shot stressed for days before it but other than a slight headache which only lasted a couple of hours I was absolutely fine so glad I didn’t let it put me off getting 2nd one ..
I came across this the other day…the title was ‘Patients with this Disease suffer less from Covid-19’…hard to sum up but first couple of sentences are: “A lab conducting a COVID-19 study on patients with fibromyalgia says it’s finding people who suffer from the condition are far less likely to have severe complications from COVID-19. Dr. Bruce Gillis is the CEO of California biomedical lab EpicGenetics. He created the first and only blood test to diagnose fibromyalgia eight years ago. He began the COVID-19 study initially because he was concerned that people with fibromyalgia would be more at risk.”
Just found it interesting and wondered if anyone else has heard of this as well as their test for fibro? Not trying to state an opinion or anything just asking if anyone has seen this or knows about it. Here is the link to article/video https://www.boston25news.com/news/doctor-patients-with-this-disease-suffer-less-covid-19/EWSHVF2KLZFDRMMH5JZ2I6WDO4/
I have had CFS and Fibromyalgia for 25 years but the last few years, not too many symptoms. 10 weeks ago I got the first Astrazeneca vaccine. After 12 hours, I developed severe shortness of breath, chest pains, palpitations, joint pain and more. That lasted for atleast 3 weeks but 10 weeks later, I still feel like the Fibro has been kicked back in. An allergist tested me and I am not allergic to any of the usual vaccine additives. They want me to mix vaccines now(add one Pfizer) but I think that sounds risky. I think I will just have to continue to be careful, especially wearing a mask and staying out of crowded areas. I also wonder if one vaccine gives some protection anyway so why stress my immune system even more. If anyone has experience with the mix and match, please let me know. I wish I had had access to the J+J vaccine as atleast it’s one and done.
I got my second Moderna shot back in February. After a few days of side effects, I was fine. Then my fibromyalgia symptoms returned – big time! I’m now struggling with many of the fibro symptoms I thought were in remission: stiffness, muscle aches, fibro fog, fatigue. And I’ve recently developed bad arthritis in my hands and TMJ in my left jaw. Oh yes, carpal tunnel syndrome. I’m very discouraged! For years I’ve researched and taken supplements for my fibro symptoms and have felt good for decades. Of course, I’d rather be vaccinated against Covid (I’m 76 years old), but I wish I knew that my fibro would rear its ugly head again.
I’ve had Fibro 56 years now. I had first Pfizer shot with zero complications. Had the second shot over two months ago and still have dizziness, muscle fatigue and bad muscle aches. Doctor tested my ANA this past week and it’s elevated since I took the vaccine. He doubled my plaquenil to try and help. I’m worried how long symptoms will last. I will not be getting any future covid shots. I’ll take my chances and mask up if I have to. I’ve just felt too terrible. I pray things get better for everyone.
Hello All, I am a fibromyalgia patient of 40 years who is usually almost normal in my daily life. I’ve found a variety of supplements, vitamins, herbs, systemic enzymes, and oxygen source that have helped my to live more pain free for about 20 years. I was determined to get vaccinated. I got the Moderna 1st and had moderate side effects starting that night with extreme stomach pain so that I could not eat dinner. I also felt some pain around back near kidneys/adrenals. A few hours later I got mild chills. This repeated for 4 days, always at dinner and a few hours later. Then I seemed to go back to normal. Before I got my second shot I read about taking anti-oxidants, and antihistamine before the shot, and using tylenol or ibuprofen after. So that is what I did for very good results. No stomach pain, no chills, no arm pain. That was 3/5/21. BUT. Now a month later and ongoing I am finding myself having way more exercise intolerance than I have for many years. With the nice weather I began to swim lengths again. And started with half what I did at the end of last year. I was slammed the next day. I’ve been cutting back and taking more time between swims, and swimming much more gently. I used to swim the whole length on one breath underwater, easily. Still can. But thought that maybe that is too stressful, so am not doing that. The last few days I am just not feeling able to do much of anything. I am glad to have found this forum, as it answers my question: is it really effecting me? Seems like I am worse off, having a setback due to the vaccine, and will have to hope that some of my usual remedies will be able to help, as well as just resting more, and go with the flow. I am glad I got the vaccine, went to a party!!! All vaxed, no masks!!! Hugging!!! WOW! Ifeel safer with it, would not want to get C-19 and end up with the long haul effects! Best to all.
I had my 1st Astrazeneca jab on March 15th (Mothers Day). I am diagnosed with Fibromyalgia and have underlying illness. Within an hour I had the expected symptoms of sore arm, throat,aches all over my body, servere headaches followed by a large lump in my arm this lasted for 9 weeks. My arm still aches/throbs around the injection site and I have headaches but, more unusual I’ve been left with what seems a permenent flat darker coloured skin patch larger than an old 50p on my arm. No one at my GP had seen or heard of this so decided to take a blood test for clotting. It came back ok. I still have these horrible aches and the skin patch. I’m very nervous about my second jab but try not to read too many horror stories as we are all different. I must point out staff at the center where I had my vaccine were very quick and efficient.
Fingers crossed with the 2nd dose!
Hi Rachelle! To answer your question, the allergist gave me a prescription for antihistamines with H1 and H2 blockers to take 2 days before the vaccine and then again afterwards.
My shot is booked for 10 days so I haven’t tried it yet. I am not sure I will go ahead with it and wonder if anyone has had a better experience using the antihistamines.
Wendy Engel – So sorry to hear you had symptoms a month after your second dose. I was wondering about the antioxidants and antihistamine you took before the second dose that you had read about. Could you describe what they were and how long you took them? Did you just take them before the vaccine? I am planning to get the vaccine in a couple weeks and am very worried to take it. Thanks so much and I hope you feel better soon.
JMZSMOM so sorry to hear how you have suffered. I hope you have a quick recovery and that the vaccine helps you. My fibro has been on 12 weeks of painful flare-up since one dose of Astrazeneca so I am not sure I can do it again. I ended up in hospital from the vaccine (shortness of breath and chest pain) so it’s been scary. They are offering Pfizer for the 2nd dose but say that the mixing gives even stronger symptoms, ugh! Be well!
I just took my first Pfizer shot. I felt pretty rough about 24 hours afterwards – just like I had COVID again (which I have had twice now if you can believe it). The first time having COVID was like having the flu – lasted about a week – no big deal. I thought I was in the clear. Six months later, I was diagnosed again. After 10 days, I was declining and the doctors kept telling me to “wait it out”. I kept going downhill and ended up in the hospital. My body cannot go through it again, therefore leading me to get the vaccine. Let me tell you, I know the vaccine is uncomfortable for a day or so, and seemingly like it has made me flare-up more since I got shot. But, I can guarantee you that it is better than actually getting put in the hospital with it. It was terrible. Hang in there and get the vaccine!
Hi everyone! I was searching on the internet for reactions to the Covid vaccine in people with Fibro and/or other chronic illnesses/autoimmune diseases, as I’ve suffered with Fibro, Raynaud’s Phenomenon, CRPS, Neuropathy, & a host of other health issues for over 13 years. I’ve just been reading through the comments and am disheartened to learn that so many of you have experienced an increase in your symptoms after receiving the vaccine, and my heart goes out to you, as I was truly hoping to find others who’ve actually experienced a POSITIVE reaction like I have. After receiving my 1st dose of Pfizer I felt a little achy & my arm was very sore, but then about 3 days later I woke up feeling rested (a feeling I’d not known for longer than I can remember!), and my cognitive functions, chronic pain/numbness, mood/emotional state, gastro issues, etc., had all slightly improved as well; these improvements in my symptoms lasted for approximately 16 days, then on the 19th day I woke up exhausted & devastated in tears as I could immediately feel that my symptoms had returned to their previous state. I received my 2nd dose a few days later and spent 4 days in bed barely able to move, with extreme body aches & fatigue, swollen lymph nodes, intense heat & pain at injection site, a high fever, & nausea/gastro issues; I honestly felt like I was going to die! However, on the 5th day I woke up to a miracle… the positive reaction I’d had a few days after the 1st dose had returned!!! It’s now been 3 months since I received my 2nd dose, and much to mine & my team of doctors’ shock, the positive reaction/lessening of my symptoms has remained ever since… while there’s no way of knowing if or for how long these positive effects will last, I cannot even put into words hoe grateful I’ve been for the reprieve! After doing some research, my doctors discovered that I am not alone, as there are others who’ve also experienced a positive reaction, so I have volunteered to be part of a research study that my doctors found on this (apparently rare) phenomenon, in hopes of understanding the science behind it & why it has only occurred in an extremely small percentage of people with similar health issues. My hope now is that there will be more people who experience this positive reaction, and for those of you who’ve experienced an increase in your symptoms, I truly wish you a timely reprieve… perhaps the study that I am a part of will shed light on the reasoning for the positive reaction & the data might be used to help others with the likelihood of booster shots being needed in the future.
Just an update. I was due for my 2nd vaccine today, 13 weeks after the Astrazeneca sh*t storm that ended up sending me to the hospital and also triggering long past Fibromyalgia. After talks with 4 different doctors and an allergist, I had to piece together a decision as no one seems to really know. What I understand is that my body had an extreme immune response. This wasn’t the usual flu like response. It was chest pain, shortness of breath, pains in joints and legs, palpitations, that lasted for many weeks. It’s called a Cytokine storm. Some people get this from Covid where the body produces so many Cytokines (substances that are produced to protect immune system) that it turns on itself. That also causes body inflammation which triggers Fibro. Based on all this, I won’t take the 2nd vaccine which was going to be Pfizer. I think it’s ok for me to wear a mask and social distance in a crowd and avoid stores when busy, etc. It’s not the best thing but it’s careful and will keep me healthy. I am starting to recover from the Fibro relapse but not 100%. Next time might have been worse. I wish good health for everyone!
Does anyone else get notifications for new answers via email but when you come to the site here you can’t see/read the answers that you were just notified of via email?
i hope you all get better. Thank you for sending me updates on how you are doing. I am going to wait till August or later to get my shot. I want to see how others recover or what doctors do to help with the pain etc after vaccine reactions.
This is in response to Carmen a few seconds ago: Yes I too have the same problem. I click on the part of the email to take me back to the site and there is nothing there as an answer. When I emailed the NFA, they responded that they can’t respond to emails as it is a volunteer org. I guess they did not bother to pass it on to their site maintenance/tech people!!! Oh well!!! I just end up reading the part they fwd me. Also I seem to be recovering from the exercise intolerance increase after the vaccine. I’m taking additional systemic enzymes and cutting back exertion and slowly building up. I also watched the film “Earthing” last night and am going to take more time to consciously ground myself by swimming, walking barefoot, sitting with barefeet on the ground. Book by Clinton Ober, “Earthing” (something like that). The film was super inspiring!!!
Wendy that’s really great to know about this product! Does it help to protect against possibly getting Covid? I wonder what the iodine does I’ve never heard of this
Hi Carmen and Kelly. Thanks for your replies.
I just want to add that my dentist is recommending a product that possibly helps to reduce Covid and lasts for 3 hours. It’s an iodine molecular iodine rinse and you can use it when you have to be around people like shopping etc. Unfortunately for me, they are not shipping to Canada right now. https://www.iotechinternational.com/products
Thanks for sharing this movie Wendy! When I was really really sick, I used to go down to the beach here in California and bury myself in the dunes and lay there for as long as I could. And it did help greatly. For me, I’ve noticed that I ache more after I’ve been in front of my laptop or if I’m driving with my Bluetooth on for an extended time period. I definitely think that I am sensitive to EMFs (electro magnetic frequencies). It’s interesting to look into this if earthing makes you feel better. There are lots of ways to protect yourself from EMFs that are inside your home. Also is anyone else on another social platform for Fibro? It would be nice to connect to everyone for support
I had my 1st Pfizer shot on May 1, usual sore arm and following day flu symptoms. The day after this felt great but then went downhill again, very fatigued. June 10 was 2nd shot, had mild headache and sore arm, didn’t last long. 12 days later started noticing my feet and ankles became very swollen and by day 13 headache returned. Noticed that I was more stiff in legs as well. Visited doctor who recommended I see cardiologist. Luckily did not have inflamed heart, swollen feet/ankles gone but now very fatigued. Diagnosed last year with FMS but I have had symptoms since in my teen years. Had a mosquito virus at around 14, recovered but never felt right, always tired + brain fog + anxiety + aches and pains, dismissed by doctors as growing pains and depression. I would not wish long Covid on anyone but maybe a blessing in disguise for us, hoping useful research could help us in the future.
This is a response to Wendy and Debra. Wendy thank you for your response…I was wondering if it was just me or if it was happening to others. I do now see Debra’s post on here (that is the one I had gotten email notification of but couldn’t see on here)…so maybe it just takes a few days after getting the email notification for it to show up on here? Wendy I’m glad to hear you are feeling better…I hope it continues.
And Debra I totally understand how you feel…I too am waiting to see if others improve or if doctors look into the reaction of fibro patients and covid vaccine more before I get the vac (and of course I am still isolating and wearing mask the rare occasion I go to grocery store in the time being)…hoping if anything all this leads to better research and understanding of fibro since so many seem to be feeling worse from vaccine as well as noticing that some people who got covid long haul are almost manifesting like fibro…just hoping some kind of positive can come from so much suffering and they can help more people. Trying my best to stay positive. Wishing you all the best and thank you so much for sharing.
Wendy Engel for exercise intolerance, I have been taking MSM (recommended by my Naturopath). I also take B12 shots which help with energy.Also Zinc/Copper balance. My joints and energy are starting to come back but it has taken more than 3 months. Be well!!!
Hi Kelly, It’s (io rinse) supposed to help prevent Covid for up to 3 hours. You swish for 30 seconds. I can’t say how well it works but they have the patients use it at the dentist office before they remove masks for treatment. The more back up we can get the better!
I am so glad I found this forum and appreciate all of the advice and honesty of symptoms from vaccines. I was diagnosed positive with Covid in January 2021. I was sick for 2 weeks but not hospitalized. I now have tachycardia diagnosed by my cardiologist who says it could be from having Covid. I have fibro and RA. For these reasons and all of the horror stories, I am not getting vaccinated at this time. I am starting to hear that having Covid may mean not needing vaccine. I am very careful with masking, distancing and only going out when absolutely necessary. My cardiologist is also ordering more tests.
I have been having heart electrical problems since my second Moderna shot. I had a bad FM flare after my second shot for about 6 weeks. Still am happy for the shot. I would have the booster as long as the heart doctor says it is okay.
I had my second Moderna shot March 30th. I have been having burning pain in my legs,feet and hands which has now includes my torso.Trying to get an appointment with a neurologist.Even with a referral my pulmonologist I got an appointment for 7/11/2020.I don’t regret getting vaccinated but I really need help and answers.Needless to say fibromyalgia is out of control.
Hi Bonnie K!
I feel for you! I just wanted you to know that yesterday Fauci announced on the news that they are labeling the J&J shot because of rare incidences of autoimmune problems such as Guilliam Barre. If you do decide to go ahead, you might want to see an allergist who specializes in vaccines, first, so they can recommend what to take before. I had the first Astrazeneca and had a major reaction as in shortness of breathe, chest pains, Fibro etc for many weeks. I was tested and have no allergies. So I won’t be taking anymore vaccines. We can keep ourselves safe, Covid is not inevitable! Wear a good mask with a PPE filter when in a crowd, order delivery instead of pickup, distance, wash hands, etc. Also my dentist is recommending swishing with molecular iodine (Iotech) which kills viruses and lasts for hours, if you are going into a crowded place for any reason. In the end, decide what feels right for you and you can weigh the risks of vaccine against the risks of transmission. Best of luck!
I’m 76, have had FM for the past 40 years, but don’t take meds for it usually. I take MSM daily and use Ibuprofen occasionally. I’m looking at the J&J vaccine now. Have any of you had J&J months ago, so you can tell me about long-term effects on FM? My FM is severe, but I have good pain tolerance. For a while, in the nineties, I was a semi-invalid from it. I’m afraid of permanent worsening of my FM after the shot. I definitely won’t take Pfizer or Moderna because I have allergies, too, and I know I’ll have a worse reaction to the second shot. The only vaccine I can consider is the J&J, so I need some feedback about it. Thanks.
Marsha I hope you feel better soon! I would check with your doctor but if you do get vaccinated, you might want to wait a bit for full recovery. Meanwhile you should have some antibodies.
I think healthy eating is great but I don’t know about juicing. Gut health definitely affects the body. I had the Superbug (C-Dificile) right before Covid hit and it nearly killed me. Now I use probiotics and prebiotics (fermented vegetables) to keep my gut strong. I was doing really well until the Astrazeneca shot. 4 months later, I am still stiff all the time. I am using MSM and just riding it out, I hope.
Why do we sicko’s or some of us get obsessed with the term “clean eating”. I was on that bandwagon 🙈 What is clean eating? If I was to juice celery and apple I would have an allergic reaction. I was a big juicer, got so bad I couldn’t leave my apartment without making sure I had correct money for public toilet. The notion that juicing is somehow going to give relief to us all is BS. The only relief I get from gut issues is eating a mostly carnivore/keto diet. Listen to your own body but let’s not preach. Anyone else notice that eating food from nightshade family makes them feel itchy? I notice I snore more and have trouble breathing while sleeping if I eat these. Getting to the vaccine topic. I have been double vaccinated for 1 month. On 2 occasions now my feet and ankle swell up for no reason, been checked by cardiologist, thankfully no heart issues. I never had an issue with swelling prior to the vaccination 🤷♂️ Also my face has been very dry and flaky, never experienced to this extreme pre vaccine. My muscles have been extremely stiff and tight but I work 40 hrs a week mostly sitting behind computer. Yesterday I had a good day, most energy I had in years. I think the post vaccine flare up is mostly gone. I have no regrets getting vaccine, the thought that this virus could cause more damage is horrifying. I already had a virus as a teen which stole my energy and left me with brain fog.
Thank you Marsha for your recent information.. my fibromyalgia symptoms got so bad after getting two shots of the vaccination. I am glad I got the shots especially with this new Delta virus. My doctor put me on Cymbalta. I have been resisting taking those kind of meds but I was desperate. It is working….I am getting some side effects that aren’t too bad now. I’m just glad that I don’t have to crawl to the kitchen and bathroom. I’m not sure this fibromyalgia is from the stomach. I’ve had stomach problems since I’m a kid. I got fibromyalgia 21 years ago after a year of different body problems that effected my nerves. If it was gut, I would have gotten fibromyalgia a long time ago….like 40 years. I eat a healthy diet but was still suffering big time. As much as I hate taking meds, the Cymbalta has helped me. I do think you should get vaccinated especially since the Delta is around. I don’t think it will effect u that much since you seem to have it controlled with your diet. Of course I’m not a doctor, but you should ask one. Take care….I will get that book. I can’t eat celery and some vegetables don’t agree with me either. Thanks again for the infro.
Well, I live in Los Angeles and have been diagnosed with Fibro since I was in my late 20”s, and now I am 44 years old, and mother of 5, and my Mom’s caregiver. I decided this year to cut dairy and meat, processed food out of my diet and start celery juicing daily 14oz-16oz of organic celery juice I make with my Nama cold press juicer. I currently have covid-19 as of Tuesday 7/13/21. My body had been aching but I thought I was just having a flareup and when I went on Tuesday to Kaiser I tested positive for Covid unfortunately I don’t have any vomiting fever or nausea I just feel my body really flared up in pain which we all know it’s normal for fibromyalgia and I do feel lympic is closed but I have good energy n was just sleepless for 3 nights. I’ve been juicing green grapes which helps with Covid and also using lot of green veggies in my juicer and i’m doing better than my boyfriend is. A good friend from elementary is an acupuncture doctor in Chinese herbiest recommended some Chinese herbs so I started taking them on Tuesday to help. I really have been extra careful I always wear a mask I always spray her feet with Lysol before we go inside the house and since we get home we take showers but we still got Covid. My concern is do I get a shot or not I’m scared about the shot more than Covid to be honest just because I’m doing OK but I hear everyone of you guys complaining on how bad your fibromyalgia is flaring up and side effects too so I wonder if I shouldnt get the shot. If I do it will be Pfizer. I’m scared of the flare ups everyone having. I do eat pretty healthy since this year I don’t eat fried stuff and meat or dairy or tomatoes or corn which caused a lot of inflammation because of the GMO‘s. I highly suggest everyone reading media medicine you can buy the book on Amazon or at Barnes & Noble‘s he has really cured a lot of diseases and also he states that fibromyalgia is a gut issue and if you can go on a clean diet it can be reversed which I’m trying to do at the moment slowly it’s not easy only eating raw vegetables and juice but I’m getting better. I highly suggest doing the celery juice it does really help when your body when it’s really hot in the morning and sore that helps with inflammation and a lot of other health issues. I highly recommend start eating beets and cherries, kale, longevity spinach. Those have helped me deal with controlling my flare ups. I did try one pill for fibromyalgia year’s ago but instead I got worse with anxiety and flareups and panic attacks so I decided to stop and go the holistic way which I don’t regret. I pray for all of us to heal and to find a day that we finally wake up and have no pain in our bodies and get enjoy life again without pain and flare ups! God bless everyone here and I hope some of this tips help some of you!
Im 36 from Brazil and i’ve Just had (yesterday) my 1st shot (pfizer) and i have FM since i was 33. I cant live UP my left arm (local shot). I was Reading an article about who had covid probably Will have stronger side effects… qnd Thats true.i’d covid aug/20. My back and my neck are really painful !! Tks for ALL !! Here we dont have so many information about FM x vaccines
I do have to agree that diet has played a big part in my health and how I feel. I’m 46 and have had FM since I was 16, Lupus and Sjogrens diagnosed at age 24, and Hashimotos at 27, just after the birth of my first child. I’ve been a vegetarian since I was 13, and vegan for 2 years. My 4 pregnancies led to really bad lower back pain, and my deliveries were excruciating to my lower back. I have noticed since removing dairy a couple of years ago that I feel SO much better. Constipation is gone too! I still had some GI issues (gas bloating), especially with lots of fiber. I recently went gluten free and all of my GI issues have disappeared! I was hoping I wouldn’t notice a difference, because I LOVE gluten products, but it is what it is. 2 weeks after starting it I accidently ate something with gluten and all of the GI issues came flooding back, so I know that it’s working for me. I did test negative for celiac several years ago, but you can still have intolerance. We have a large family, so we don’t eat in restaurants, and eat very little processed foods. We cook amazing meals at home for our family.
I received my covid shots in the spring and only had the day after sickness that is common with most people. My health issues were not affected at all by it.
You have to figure out what works for you. This is just what works for me. Our 19 year old daughter just got diagnosed with Hashimotos too, and I told her, “You are young, and I know it’s hard, but someday when you feel shitty enough you will try to find what works for you. You just have to have enough motivation. It took me many years of suffering, but it was finally worth it to me to give up some foods I love to feel normal.” She is now trying gluten free to see if it helps her, as her doctor at Mayo also recommended it. We will see how it goes.
Not Covid related but I saw the few comments re: healthy eating and fibro…and I do agree w/ Peter how sometimes it is not the answer for some of us. That’s the crazy thing I find w/ so many of these issues (I also have chronic migraines and chemical sensitivity to the point that nearly any smell can trigger migraines for me)…but seems like different things help different people. For example I tried detox diets, juicing, etc for many months and unfortunately for me all I did was get worse; worse migraines, lack of sleep and it killed my stomach and gave me really bad heartburn. I came to find out raw veggies even if juiced do not sit well with my stomach. I have a small list of foods that I’m okay with and can tolerate…but I’m sure most would say it’s not a ‘great’ diet (I mean it’s no artificial things or fried fatty foods or anything like that and it’s basically vegetarian) but I just have to eat only those foods or my stomach is so bad I can’t sleep at night(for some odd reason my list of foods got even shorter this last year…sometimes I wonder could I have had one of those covid cases where it just affects your gastro intenstinal system? although I’ve barely been around any people in well over a year and always mask if I take a rare trip to grocery store). But funny thing is I went to a ‘natural’ doctor who did all these tests (like where you had to do stool samples daily for a week and send it to lab) and she was so excited when I came into the office and said ‘Wow you are my first patient ever without signs of inflammation in the gut!’…to which I said ‘what does that mean?’ and she said ‘well it just means you are eating the right things to not aggravate your stomach’…and even though she didn’t like what I was eating (she basically wanted me to eat meat 3xs a day plus veggies)…it was proof that my ‘diet’ was working for me and not inflamming my gut because I was listening to my body and just sticking to things my body seemed to tolerate. So I think that may be the biggest key overall w/ diet…to listen to your body and how it responds. I wish all of you well as I know the struggle is real.
Another thing I wanted to mention that helped my FM enormously was taking aspartame out of my diet. It has been linked to chronic pain. It might be worth a try. I noticed it when I was pregnant. I had quit aspartame to be more healthy and my worst FM symptoms went away. Here is a very quick video that explains it more in detail:
Come on guys, we all should get this vaccination. Not only for ourselves but for children who haven’t been vaccinated. The only way we are going to get rid of this virus, is by all of us stop being afraid of not feeling well for awhile. Do u realize what this Delta virus will do to u. I had some problems and the doctor put me on Cymbalta. I now feel like a new person. Only if the weather is low pressure do I feel a little achy. Stop being babies.
As I have stated in previous posts on this subject, I had a pretty rough time after shot 1 and 2 of Moderna. Corona 19 loves to prey on the unvaccinated and especially on people with compromised immune systems, unless I am wrong, means people with FM. I’ll be first in line to get a booster shot(s). Dying from Covid or getting long lasting Covid symptoms is not something I’m willing to do.
And going to a gym? It’s a Covid-19 cesspool. Stay out of there. Put your masks back on, people. It’s the least we can do.
My advice is if you’re getting the vaccine, keep a journal on how you feel over the 1-2 months before having it. It’s so easy to forget how bad we feel at times and also so easy to want to blame or find a reason for feeling bad.
I am still getting swollen ankles after 2nd shot on June 10, been checked by cardio who found no heart issue. Maybe I’m in denial that I’m aging 😞. I felt more exhausted than normal over last weeks, but this is normal with FMS. I don’t want this virus, the thought of my situation deteriorating is something I’m not willing to gamble on. I’ll be lining up for the booster. Some of the comments here make me wonder if outside parties are trying to persuade people from having it 🤔. If a lot of people were still feeling bad from the shot I’m sure they would return here to shout it out to the world.
When they clear this from emergency trail or come out with one for people with supper health issues than I will look at it. I work full tome and wear a mask wash hands. I also work out at ca gym 3 to 4 times a week plus very active. I take vitamins from a natural pathetic doctor. I will not get the vaccine now at all. You are just a few who have said how they feel that is good enough for me. I am a college educated person so don’t think I am a stupid person. I know doctors who are going away from hospitals because they are pushing the shot and they won’t get it. I am glad you all got it and I pray you stay healthy after it.
This is for Deb.
First dose Moderna was nothing to write about; tired and a very sore arm. Swollen lymph nodes under arm where I received vaccine. Second shot was something to write about!
Next day, fever 101,body aches and inflammation in joints I did not even know I had. I felt like I needed hip replacement surgery I could not walk without holding on to something. It all subsided but in all honesty to feel as I did before the first shot took 3 months. I dread needing a booster shot. Having said that I will get that booster shot should it become needed. Dying is one thing. Long covid as I fully expect many of us have a good chance of developing in hell on earth. I know two younger and healthier people than me that are still dealing with life altering symptoms with no idea if they even have a chance of getting better. Both had mild symptoms originally, one has been ill for 14 months the other about 8. One is more or less bed bound. I understand vaccine hesitation. If you don’t get vaccinated you may be better to stay home and refuse to be in contact with anyone who has not been vaccinated.
In a question of months the vaccine will most probably no longer be considered experimental. Unvaccinated people could be excluded from a number of places, life will become complicated for them so many will drag themselves to a vaccinated center. It may be safer for you to wait for a higher % of vaccination before you step out of the house again. Hopefully by Xmas things will be safer for you. Stay safe, this virus will change your life.
This is for Deb.
First dose Moderna was nothing to write about; tired and a very sore arm. Swollen lymph nodes under arm where I received vaccine. Second shot was something to write about!
Next day, fever 101,body aches and inflammation in joints I did not even know I had. I felt like I needed hip replacement surgery I could not walk without holding on to something. It all subsided but in all honesty to feel as I did before the first shot took 3 months. I dread needing a booster shot. Having said that I will get that booster shot should it become needed. Dying is one thing. Long covid as I fully expect many of us have a good chance of developing in hell on earth. I know two younger and healthier people than me that are still dealing with life altering symptoms with no idea if they even have a chance of getting better. Both had mild symptoms originally, one has been ill for 14 months the other about 8. One is more or less bed bound. I understand vaccine hesitation. If you don’t get vaccinated you may be better to stay home and refuse to be in contact with anyone who has not been vaccinated.
In a question of months the vaccine will most probably no longer be considered experimental. Unvaccinated people could be excluded from a number of places, life will become complicated for them so many will drag themselves to a vaccinated center. It may be safer for you to wait for a higher % of vaccination before you step out of the house again. Hopefully by Xmas things will be safer for you. Stay safe, this virus will change your life.
Now that I’ve had the vaccine and suffered through the side effects, I am very glad I received it. Now, I educated myself about the vaccine. I really studied it. Then, I was diagnosed with another immune disorder. I felt I had no choice as I wanted to live and socialize around people or go to the store. I did have side effects for about a month. However, it was not as bad as many of you. Once I realized I wasn’t feeling well, I went to see my acupuncturist who also does natural allergy elimination therapy.(NAET). She had the Covid 19 vials. She cleared it from my system, meaning my body can now tolerate it. That took 2 visits. I recommend people study the vaccine. Learn how it interacts with your body.Learn the TRUE cause of fibromyalgia. Eat healthy foods. REST! Of course, I am assuming one does not work. When one works, take FMLA and rest after your vaccine, if you have side effects.
I don’t care how you all eat I want to know how you are feeling after the vaccine. I also want to know if your problems after the vaccine have gine away. I have not gotten it as I don’t want the problem from the vaccine.
I am wondering how much the vaccinations have played into my fibromyalgia symptoms. I had my vaccinations in March and April 2021 and experienced greater fatigue from the time of the first one all the way through May and into June when I got really sick with Covid symptoms. Had a test, was negative for Covid, but a month later I’m still coughing so hard at times that I gag!
I suppose these could be unrelated. Timeline wise this was my experience. I’m finally getting a tiny bit of energy back 5 months later.
Hi Liz. I feel for your situation. It’s a hard decision. I know some young people who are ok after Pfizer or Moderna. A few had Fibro flare-ups. I cannot take the 2nd vaccine as I had a serious reaction to the first (Astrazeneca). Get a good 3-ply mask that allows you to insert a PPE filter. With that and distance as much as you can, you should be ok. Also while this disease sucks, younger adults are generally ok afterwards so I hope the best for you and everyone else.
Has anyone in their 20s gotten the shot? If so, what side effects have you gotten? I’ve been social distancing, wearing my mask and haven’t gotten the shot due to a variety of reasons. Many of my friends have gotten blood clots, have nerve issues, heart problems, flare ups and other weird side effects because of the shots. Looking at this chain, it seems like people who have gotten the shot have had severe side effects that have lasted for weeks to months. I can’t afford to be out of my job for more than a day since I run an entire department by myself. I’ve had fibro for 16+ years, and my body has been in constant painful flare ups for the last 6 months due to the weather. I really can’t afford to get sick or have my fibromyalgia get any worse. Is it just safer to not see people/go out in public, wear a mask and use air filters? Also, has anyone else read the study they released in July fibromyalgia being an autoimmune disease?
I hope you don’t come to regret it.
All and only the very best of health to you, your friends and family.
Lets hope this is all over soon.
I will go out and do what I want you don’t like it to bad you are not anyone to me nor does your opinion matter to me. I work for a living and did since Jan 2020 so live with that and keep your point of view in your house.
I wish it were a personal decision to get vaccinated or not.
As I wrote I don’t go for vaccine and its my choice to make as it impacts no one but myself.
Unless you are happy to stay home not getting the vaccine puts others at risk should you go out into the world.
No one should be bullied into vaccination. Have the grace and be responsible for your choice. Do not go out unto the world if you are not vaccinated.
I agree with Deb! You can’t judge and tell people whether they should get a vaccine or not. Some people have serious health reactions to vaccines. For whatever reason, it is a personal decision. We need to all share info here and take care of each other. Whether you have full vaccinations or not, people can still get sick and/or spread the virus. For now if people take care, wear the dreaded mask, and distance when possible, we will all get through this together!
Never tell anyone to get the vaccine. You are not doctors and don’t know anything about a person’s health. Keep you bully of people off this site I am sick of it.
I agree this is not the place for shaming. I feel the same way you do about vaccines. I do not get allergy or flu shot. I got shingles shot years before I was diagnosed.Am I ever happy I did!
These were decisions that affect only my body. Covid is vastly different.
I really hope those who do not want the vaccine understand they are putting many people in danger of illness and death. Please stay home until this passes and don’t endanger innocent people. Its really the only conscionable thing to do if you do not get vaccinated. Those of us that are vaccinated will not get sick from contracting the virus from you. Perhaps sniffles, fever, cough; at worst symptoms of a bad cold. Most will be without symptoms BUT because of the delta varient will carry a sufficiently large viral load to unknowingly unwillingly make sick or kill an unvaccinated person.
Please weigh all this before you leave the house unvaccinated.
Barbara Corak, please don\’t label those hesitant to get vaccinated \”babies\”. As you know, one with fibromyalgia can have years of remission, meaning not even having the flu and being relatively healthy. For myself, I have had more fallout from vaccines (shingles, allergy shots) than anything else so I know for myself, this unapproved and untested on autoimmune folks vaccine will undoubtably bring on relapse as many have testified here. It sounds easy to go to a doctor and get some Cymbalta, but many don\’t have that luxury. Everyone needs to do their own research and weigh the pros and cons. This site is for sharing experiences and encouragement, which many have done, not for shaming. We get enough of that from the world with our \”invisible\” illness.
I wanted to share with everyone that I finally got the Pfizer vaccine yesterday. The shot itself was painless. I felt odd after almost woozy for a couple of hours. Then I had no symptoms at all. Until the early evening. I had a bad headache and chest pain. The headache was worse than the chest pain. My upper arm hurt but not at all terrible. I fell asleep without my usual sleep medication but woke up super early like 3:00 am. Today I am totally fine. Slight headache but Excedrin took care of it. I actually have less pain and more energy than I normally do. I’m thankful I have no bad reactions so far. I wonder if this means my immune system is better than it has been in the past? Anyway I’ll keep everyone updated if I do have reactions. I have my second dose in 3 weeks. I know how much we all depend on others reactions to see if it is worth the risk to get it. I finally decided to get it because I need a hip replacement in the next few months. The surgery will be at a hospital and I will likely stay overnight. I didn’t want to take the chance of not being vaccinated when I have the surgery. Also it doesn’t look like this is going anywhere. I figured if I flared from the vaccine that I would have a better chance of recovering from that than if I got the virus. And possibly being a long hauler. It was a risk I decided I wanted to take. Anyway I hope my story helps someone. I know everyone who has shared here has helped me.
Hi Louise I did the same thing. I went on all the sites to see what people said about weight gain. I saw many more who said they had gained but my doctor insisted it was weight neutral. I thought, well I’m underweight by 7 or so pounds so maybe I’ll take it and be a better and healthier weight. And I was for a short while. It didn’t get bad until 4-5 months in. Even then it was tolerable but in month 7 I ballooned. And honestly I felt so bad before I would have been ok with the weight gain if I could have been pain free. But it didn’t really help with my fibro pain. So I dropped it. But you could try it for a few months to see if it works for you. If it does it may be worth it and you may not gain? It’s worth a shot anyway
Mine were February 1st and 28th, both Moderna. Frankly its only been a month or six weeks since I feel as I did pre-vaccines. I hope we don’t have to go for a booster. I will get it but I must say my patience with those refusing the vaccine is running thin. No one should be forced but please stay home if you don’t want the vaccine. You are a danger to others, also the cause of a possible need for a booster. Please keep away from the general population. Its the only responsible thing to do if you won’t vaccinate.
To think that we may be going back to masking because of those unwilling to be vaccinated is infuriating. True even vaccinated people can spread the virus but its rare, and lets not forget vaccines are meant to prevent serious illness and death, not a case of the sniffles.
Thank you Kelly,
I have been warned!
When first offered to me I refused for fear of weight gain. My md told me it was not a significant side effect. Does he believe the studies conducted by the pharmaceutical industry or is this his experience with his patients? I donât know.
I was not convinced . I have yet to meet a person that has not gained weight on anti-depressents. The exception is Wellbutrin. I was hoping to hear from those in this group in the issue. To date 3 answers and have put on weight.
Itâs RARE to not gain any weight from Cymbalta. We all know the pharmacy inserts donât mean anything in terms of real reactions. I was model thin before Cymbalta. Now I canât lose the extra 20 pounds it left me. Only you can know if you want to try it. I finally found a doctor who is helping me immensely. Cymbalta didnât make me gain real weight until at least a few months in. Remember that.
This is for Louise Mathieu about Cymbalta. I had ALL of side effects (vomiting, nausea, headache, bloating, …) !! my rheumatologist suspended !! So, i switched to Velija 60MG/day(from Libbs Lab). it’s the same component, but I had no effects and my pain improved considerably.
Louise….I have not gained a pound. Actually, Iâm reading the information given to me from my pharmacy. It reads lost of appetite as one of the symptoms. Iâm not losing any weight because I can stop eating Turkey Hills new Coconut Cream Popsicles. I gained weight during the lockdown because I was stressed out. You donât know why anyone gains because you donât know what they are really eating or any other physical problems. I would try it. Let your body get use to it for ten days. You can always get off of it. Iâm so sorry I was afraid of it many years ago. Iâm feeling almost normal. Look Iâm 81 years old. People see me and think Iâm not older than 55 years. Even at my worse, I keep thinking positive thoughts. I started to read about Law of Attraction. I mediated. None of this help but the Cymbalta did. All of the Specialists that I saw over the years recommended Cymbalta. Try it you may like it….you can alway stop.
Th you for your answer re weight gain and Cynbalta.
After reading that Barbara feels so well, I was jealous!
Not so sure that Cymbalta is for me now. Would anyone else be so kind as to share their experience with Cymbalta; pain levels, weight gain, mood?
I really appreciate it, thank you all.
Hi Julie, I am wondering if you suffer from allergies to pollen and grass? I have noticed my allergies are worse this year after having had the vaccine. I have had therapy in the past to reduce it, maybe it’s just waning.
To Louise, I took Cymbalta for a year and a half. I didn’t gain any weight for a couple months. Then I gained 5-7 pounds which I liked because I was so underweight before it felt good to not be so skinny. I topped out at 40 pounds before I stopped. It didn’t help with the pain for me. I have lost 20 of what I gained. I still haven’t been able to lose the last 20. I’ve been off of it a year and a half and I am stuck at my current weight. I feel like it changed my metabolism somehow. I would be fine with just losing 7 pounds at this point. But I can’t even lose 1 pound. I finally threw my scale away and it is what it is. I’m so much better with my Fibro pain so i try to not worry about the extra weight. Jait my two cents :)
To Louise: several specialists wanted me to take Cymbalta but I was concerned with the side effects. After the vaccination, I was in such bad shape that I decided I had no choice. I had several minor side effects but I stayed with it. After about 10 to 14 days, they all left. I’m so glad I preserved.
My md, a U of Penn prof of internal medicine suggested Cymbalta.
I declined because of weight gain concerns. I decided to give it a try because of you.
Will keep you posted.
To Louise…..not from the Cymbalta but from the year’s lockdown. Thank you Covid. I gained about 15 pounds then. I’m working on losing it. So far no extra pounds from the meds. I taken about 45 pills so far. I am so grateful that I now feel so good.
I was basically in bed every day except when I went to the food store and then I was back in bed. I’m a 48 year breast cancer survivor and this fibromyalgia is far more debilitating then anything I ever went through with the cancer. The cancer was a walk in the park in comparison. Of course you don’t walk on your breast so that helped. I really feel a little cheated because I’m in my last chapter of my life and I wasn’t having the “Golden Years” that was promised to us seniors. I am grateful that I’m getting some relief now. Everybody on this chat line, I wish you all good health and finding relief
For Brian and anyone else who is still suffering from vaccination……I was so desperate that I finally decided to take Cymbalta. I let 10 to 14 days so some of the side side effect would go away (which it did), and now I find that I’m in no pain just about everyday. I never felt so good in such a long time. Sometimes when it’s low pressure, I feel a little off but nothing like it was. Maybe u should consider it. Good luck and be glad it’s not this Delta virus.
Searching for answers regarding Chronic Fatigue Syndrome with Fibromyalgia and how the COVID Vaccine will affect people with this diagnosis when I stumbled upon this site.
I have lived with both since 1997 and was diagnosed at Mayo Clinic after being treated horribly by many Healthcare professionals.
Spent years researching for a cure and spending thousands on books, supplements and such. As I was so ill that I was bedridden and in constant pain with horrible brain fog. And became a slow healer. It took me 16 weeks to recover from my last bronchitis episode. Still I would not give up my search. Finally, I found what has worked for me and others I have shared this with who were sick enough to give it a try. I am not a doctor and am on sharing my experience of what worked for me and ask you to research for yourself. I bought the book THE ESSIAC REPORT and read it thoroughly…it is a one day read. Then I bought the tea from Herbal Healer Academy out of Arkansas in the 4 Herb Bulk Tea (online). They only contract organic farmers to guarantee their Herbs are fresh and each bath is tested when received to ensure the Herbs are fresh and what is required for the 4 Herbs. It comes to your front door and is very reasonable in price. One order lasts 4 weeks. You will receive instructions on how to make the tea and instructions MUST be followed exactly or the tea will be tainted.
After drinking I noticed the Fibro pain subsided substantially, brain fog was less and most of all I was out of bed and functioning with much more energy. Because I was so ill I drank 2xs a day 4 Oz of tea each time. I would start feeling better and would stop drinking the tea. Before I knew it the debilitating fatigue would return along with other symptoms and would get back to drinking the tea. I eventually realized that I needed to stay on this path. I drank the the tea for years and my husband was diagnosed with congestive heart failure so my focus became taking care of him and stopped making and drinking the tea as he was in and out of the hospitals, driving him 2 hours to the 2nd hospital, preparing his heart healthy meals, etc. I realized that I was functioning fine without the tea! No fatigue, pain, clear thinking and I was so grateful. Then I fell and blew my whole wrist out and needed urgent surgery. It was in the hospital I discovered I had COVID and my husband was tested and he had it too. My sister drove us to the hospital for my surgery that day. Both my husband and my sister were fully vaccinated and I was not. All three of us were infected! My husband and sister were sick for 2 weeks and had headache, diarrhea, loss of smell and taste, fatigue and all over pain but have fully recovered. I ran fever for a month, system muscular pain, headache, loss of smell and taste, vomiting, couldn’t eat and only drink very little forc9 days, and slept all the time. My husband called an ambulance for us both and we were given the Regeneron Cocktail Infusion and I discovered I had COVID PNEUMONIA in both lungs! I was so sick I didn’t realize how sick I was and everything was a blur. They prescribed us both Prednisone and sent us home. I finished that round and visited my Primary doctor and she has now prescribed 2 more rounds of Medrol. I’m still experiencing head pain, extreme cognitive dysfunction with memory loss, breathlessness and my lungs are still rattling. But home and feeling better each day.
The reason I was hesitant about taking the vaccine was due to my underlying health condition of CFS and Fibro and I am very hypersensitive to RX Meds and worried about the vaccine exacerbating all of my symptoms again after finally finding relief from drinking the tea for years. So I started searching for answers and found this site. I want to thank each of you for taking the time to post your experience with the vaccine as this helps give me some information on what to expect. Because I was given the Regeneron Cocktail Infusion I must wait at least 90 days before even thinking of getting the vaccine. And my husband is scheduled for August 18th for Pacemaker with Defribilator Implant Surgery and will take 4 weeks to recover so I know I will need to wait until he has recovered before I can take the vaccine due to the post vaccine symptoms reported here. So I am grateful that I read this or I would be no help to him if I get sick from the vaccine.
I just started taking Vitamin D, Zinc and 1000 MG of C each day as it helps to fight the Covid. And will have my tea made and ready for when I get the Vaccine to help with the after effects.
God Bless You All and maybe something I posted will help someone as your Posts have helped me. Take Care.
I had my final shot February 28th. Since, I have noticed an increase in the chronic pain, which leads to fatigue. Don’t recover from exercise as well, and my VO2 Max is stuck at 32. I definitely believe the vaccine has made the disease worse for me.
Hi guys. Im 43 years old.
Ive had my fibromyalgia diagnosis since 2010 and also have hashimotos and IBS.
The first shot i started noticing less than 2 hours later. Extreme fatique and chills. This was suddenly gone after about 6 hours. The next night i did feel pretty bad but it was gone in the morning. My sore arm lasted about 4 days.
Fast forward to 2.5 days ago. Got my 2nd Pfizer jab, and the fatigue started 3 hours later. Thought it would be the same as the first shot. Went away after 7 hours, but then 2 hours after that, it hit me like a freight train! Chills, extreme headache, and total flu-like feeling. Sore muscles all over (especially neck) and my left knee (which is normally fine) hurt so bad in the joint as if someone took a sledgehammer to it! I even had to ice my knee. Didnt sleep a single minute the first night. My brain just didnt switch over. I also developed a low fever at that point. In the morning, my sinuses were killing me. Managed to nap a bit the next day (30mins). Was able to sleep some the 2nd night on and off (again horribe sinus pain). During the second night (around 36 hrs after shot) i started having horribly painful upper teeth and night sweats (oh, the sweating…)! Its now been exactly 54 hours since the shot and while most of my symptoms have lessened to some degree, i still feel poopie. Mostly headache, brain-fog, flu-like at times, and neck pain. Arm pain has lessened faster than the first time around. I hope i feel better soon…
A message to all who are worried:
Please get the vaccine!! As horrible as im feeling now, im sure its nothing compared to getting the real thing. I know i feel bad because my immune system is triggered and trying to help me. That thought helps. Id be much more worried about catching the real thing. You will not die from the vaccine despite feeling bad and possibly having flare-ups. Trust me, its nothing compared to what Covid could do to you. Either death or sickness that could well last years. Please do the right thing and protect yourselves. God bless, Eric
Thank you Kelly.
Unfortunately it appears to be the safest thing to do. There will most probably be a booster🙄.
I really really don’t want to take it but I will. I am much more frightened of setting myself up for long covid.
As for staying home if one has chosen to remain unvaccinated, clearly the unvaccinated are not staying home or we would not be where we are today with overflowing hospitals in areas with low vaccination rates. Strangest thing to be ok with the idea of being the cause of illness to friends and family.
On a last note. I seem to feel much much better. I mean I feel quite close to how I felt pre fibro, this after 4-5 months of stiffness and pain all over post vaccines.
I read in the UK about 30% of people with long covid have dramatically improved after their second dose.
Louise that’s a really good point. People who have or had Fibromyalgia and have no effect from the vaccine are out enjoying their lives and not stuck on a website wondering if other people with fibro have not had any side effect either. I agree with you as well on these side effects. If the worst that can happen with the vaccine is having a flare for a few weeks or months vs having Covid and possibly dying or being a long hauler I’ll take my chances with the vaccine. Not to mention most who are getting it and and being hospitalized are unvaccinated people. It’s a no brainer to me. And someone said we don’t know the long term effects of the vaccine yet…and we won’t until a long time has passed! I believe that at some point, we will need a vaccine to do many things. So get it and be free to do what you want. Don’t get it and be housebound. Eventually that’s what is going to happen
The two of you have been so lucky until now. Congrats!
No one needs to explain the science to you.
Yes,there were side effects for many of us. I suspect those that did just fine don’t bother to look for a forum such as this. So who knows what the proportion is?
I would really love to know how many fibro patients who tested positive are still wrestling with the aftermath ei; long covid.
It looks like covid19 is becoming or has become endemic. At some point you/we will most probably get it also.
So as the film (Dirty Harry/Clint Eastwood) goes, you two have one question to ask yourselves;”Do I feel lucky?” And I would add for how long?
I have never won the lottery. I got the vaccine and dealt with side effects. They have subsided.
Yes, I do feel lied to about certain recommendations from CDC, Faucchi and the media. Absolutely.
Does that change my probabilities of contacting covid? No.
So I took the vaccine.
I sleep unworried about serious serious consequences of contracting covid.
All the best to you and family.
My question is who feels lied to? I’m in my 12th year of fibromyalgia. The more I hear, the less I feel the vaccine is gonna protect me? I’m a nurse that has worked Covid and my husband a correctional officer. We’ve both been exposed but never tested positive. Now they want to mandate the vaccine even as vaccinated people are being tested on a regular basis and we are on the brink of mask mandates again. I would sure like to know more about long lasting effects before getting vaccinated. How many wish they hadn’t bothered with the pain and flare ups I read in the posts from months ago?
I’m curious now months later how you guys are doing? I’m scheduled to get my fist vaccine pfizer. I know I can handel a week or two of flear up after the vaccine. But I’m worried of long term effects. I worked so hard to get where I am now and don’t want all to go down the drain with taking the vaccine. But I’m also scared of covid and sideaffects
Has anyone had the booster shot?
The third dose. In the UK over 50’s start receiving 3rd dose in September.
Not looking forward to it but will get it as soon as my md tells me. I want to travel this autumn, am 64 years old diagnosed 10 years ago.
My sister’son and his gfriend in their 20’s, one vaccine in just tested positive. They live in London. Son has sniffles, gfriend fever, chills, flu like symptoms. My daughter’s brother and sister in law in California both double vaccinated just tested positive. Both in their late thirties feel as if they have a bad flu. The delta variant is strong.It does look like we are all eventually going to get it. I will get the third dose.🙄
I’m 85 years old. I was diagnosed with RA 10 years ago, and fibromyalgia about six. I received my two Pfizer shots in February 2021. I had a flare up after the first, and a worse flare up after the second. When I asked my rheumatologist about them, at first he said, “there’s absolutely no connection (between vaccination and flare up).” After two months he said, “now I’ve had other patients report flare ups.” I realized that his first answer was based on the fact that there were no studies, no data. Since I’m either on, or have tried most fibromyalgia meds, my rheumatologist advised me to do the no-Gluten, no-dairy, no-sugar diet, which helped me after my diagnosis 10 years ago. I did everything that helped me back in 2011–slowed down, got more sleep, did acupuncture, and regularly do yoga, Tai Chi, and water exercise. I’m better. Like most of you, I’ve found all this a trial, but I’d much rather have had these flare ups, than gotten Covid without the vaccine. I don’t regret getting the vaccine one bit!
Am so very sorry to read all this Peggy. I admire your courage, elegance and humility to write this. If it decides even one person its huge. As we know one is not one. Covid does not stop at one.
I hope you pull through without lingering after effects. Same for your sister and my sympathies for your dad.
I have had fibro for many years. I have good days and bad, like everyone else. I did not get the shot because I wanted to research more before I decided. I didnt go out much and didn’t feel I was at much risk. I was diagnosed on April 15 with Covid. I had been sick for a week before calling EMS to pick me up. I have never been so sick. It was awful. Still suffering from the effects 4 months later. My father died from Covid. My sister was expected to die. But, pulled thru. She is on oxygen because of Covid. No, you may not be one of the bad cases. But, what if you are? I would trade a few days of not feeling well over Covid if I could.
I had Moderna vaccine on March 25th and April 22nd. First shot only had a sore arm for a couple of days. Second shot low grade fever, body aches and bad headache that evening but only lasted about 4 hours. For the record I was dx FM ten years ago but now know it’s been going on since childhood. Mother and paternal aunt both also dx FM so I clearly lost the genetic lottery.
Family member with FM contracted asymptomatic covid 11/2020 and is still dealing with long covid 08/2021. I consider the vaccine much better than full-blown covid.
Hi All, I am 55 years old and was diagnosed with Fibromyalgia for about ten years now, most likely had years before but it took a long time for doctors to figure out. After my first dose vaccine pfizer it wasn’t too bad. I had sore arm and I could only raise it up a little, not passed my shoulder height. Mild neck and headache pain. Mild body aches. I just had my second dose of pfizer and I am feeling really bad. Very nauseous, bad headache, feels like when you have a bad head cold and when you try and walk you feel slight off balance too, body aches all over in the bones, the muscles, like everywhere, even in my feet. Hard for me to get out of bed to even go to bathroom. Don’t feel hungry. Basically bed ridden. I am day two and a half now. Hoping I will feel better soon as hard to manage this. Getting Covid would be way worse than this, so I am trying to stay positive. I took Tylenol and it has helped a little to ease symptoms. Take Care Everyone.
I got my Pfizer vaccines back in March (5 months ago). I have been off all controlling medication for my Fibromyalgia for approximately 10 years (diagnosed 18 years ago). I have also been off of daily controlling migraine medicines for the same amount of time (diagnosed 33 years ago). With the first vaccine I felt a bit flushed immediately, but nothing after 30 minutes. After the second vaccine I didn\’t have an immediate reaction, but I became extremely exhausted approximately 24 hours after. I then had a mild headache for about 1 week. I was a bit more tired than usual for about 3 weeks. I absolutely DO NOT REGRET getting the vaccine myself even if I will need a booster shot. Even if I get COVID later (I am a teacher of 11-14 year old students so I know some of my students will get ill) I feel confident that my symptoms will be much less than if I wasn\’t vaccinated. However, I understand how others who are worried about side effects may be hesitant.
Looks like boosters for the mRNA vaccines are coming. Already approved for the immunocompromised. I’m 76 years old and afraid that my protection from the virus is waning seriously every day. I had a bad reaction to the second Moderna shot, but eventually the symptoms subsided. I know the booster side effects will not be good, but I don’t want to risk getting sick or losing my life when I still have so much to live for!
Unless you stay home you may want to get the vaccine. It took a few months to get back to how I was pre vaccine. It was unpleasant for perhaps 2 weeks after 2nd shot then I just felt low energy. For some reason in the past month I think I feel almost as if I never even had/have fibromyalgia.
I am terrified of long covid so I got the 2 doses.
Hello, Im just new here, I was doing research about wether I’ll get the Covid vaccine or not. And what brand would give lesser/weaker side effects that will not debilitate me forever. I also have FM and been taking my life for almost 2yrs now and really struggled with pains and other symptoms of FM. My PCP is not recommending me yet to get the vaccine, and personally Im also scared to take it just because of my existing symptoms of FM. And there is nothing as hard having pains, fatigue and a lot of uncomfortable feelings especially during my flare ups, my worst and downhill moments was last January to April of this year 2021, the next month May, my pain and fatigue and dizziness got lessened a bit. First 2wks of June I felt better but on the third week, my symptoms just suddenly came back, but its moderate and on & off. So now, Im scared to take the vaccine for the reason that it may aggravate my symptoms big time and I dont know if I can handle it. My rheumatologist did tell me that I need to get it than getting Covid and suffer in the hospital.
I had my first shot with very few symptoms. I’m due for my second this Friday but have to put it off for another doctor appointment. I looked up how long you can wait in between shots and you have to wait at least 3 weeks for Pfizer. And you to 3 months to actually get the second one. I’m wondering if waiting a bit (maybe a week) in getting the second one will help mitigate the flare? Just curious as you all know there is zero research on fibro peeps much less anyone else.
I was in remission for about 8 months prior to my 2nd dose in May’21, ever since, my symptoms have been gradually been creeping in. I wish I hadn’t got the vaccine now, but I live with my 85year old dad, so it was the right thing, but im paying for it now!!!
When I hear about people having long covid, I think to myself it’s sounds like Fibromyalgia / ME.
Sending love and light to all
I also want to get booster.
I am sure it will be a drag but I really don’t want to be sick with covid. I will probably get a some point late sept. Will keep everyone posted. I too would appreciate comments by those who have gotten booster.
Because my employer was requiring me to get the shot to keep my job, I begrudgingly got it. I went with the Johnson and Johnson one. In my own research (Bing, not Google because Google has shut down any website with negative covid writings) I found repots that this shot seems have less side effects for people. Another plus is it’s one and done. I did a few things that kept side effects away. I fasted the day of and continued with intermittent fasting since and only eating a Whole 30 diet since. Absolutely no sugar the first 24-48 hours, not even fruit. I took ibuprofen and vitamin C before and after for 24 hours. Activated charcoal before and for 48 hours afterwards. Now I’m doing a combo of supplements that were recommended for detoxing after vaccines and my pine needle tea is arriving sometime soon. I went to a Minute Clinic to get the vaccine and the NP told me after I got the shot that if I had any adverse symptoms, I could report them to Disease Control so they could collect data. I told her that is how they are doing trials—on us. I still feel angry that I had to get it to keep my job.
I can’t tell you what one thing helped me, but I have not gotten any symptoms besides a slight headache and that could have been due to the fasting. I’m two days out and no aches or even infection site swelling or pain. My Fibro has been mostly under control for the past several years due to diet and exercise but I feel even less inflammation now. I’m 54 and was diagnosed 12 years ago. I hope this helps others who are in this same postion.
Hi Rebekah L. Sorry to hear about your difficulties. I hadn’t had Fibro for 15 years or so but the vaccine gave me a relapse. One thing I found out afterwards, is that an allergist can prescribe meds like antihistamines, etc. that can help prevent vaccine side effects. I had a full blown immune storm reaction so I may not be able to take another, but that is rare. It depends on your contact with other people and what will make you feel safer. Best of Luck!
Hello. I am trying to post again and for some reason, the NFA did not post my post. Is it because so many people are anti vaxx on here? Anyway, I WANT to get the booster, and I am wondering if anyone else WANTS TO GET IT and how you feel about that. I have had fibromyalgia since I was 16 and am 48 now and have had bad luck with support groups so I usually do not reach out at all since I have had to “go it alone” with my illness and I grew up in a dysfunctional, alcoholic family that has never believed it is real. Anyway, I DEEPLY appreciate any responses.
Again there is advertising for some herbal remedies. This is not the forum for these snake oil merchants. Would you please be so kind as to monitor this blog and not permit salespersons to advertise.
Dear Louise, This site is monitored and I assure you that we try to give our members an open and free speech forum. We do not allow any advertising but once in a while things do slip through. If you don’t like these coments then please just ignore them!
Hey guys, the reality of this situation is that eventually you will be required to get a vaccine bin order to do anything. It may not happen for a while, but I do believe that’s what we all need to be prepared for. Severe allergic reactions are rare, even without the vaccine being out just a short time. The FDA just officially approved it which should give us all peace of mind. Not to mention if you DO get vaccine injured, you can have your claim to the regular vaccine court and get a better chance at a fair judgement. If you refuse to get one or can’t because of an allergic reaction, stay home. Shelter in place. Keep others from getting sick by not being in the community and putting everyone else at risk. That’s your part. No vaccine equals staying home for the good of everyone else who got the vaccine. I’m not judging anyone, I’m just stating the obvious path. Don’t put everyone else at risk because you can’t or won’t get it. Do you have rights? Yes, and so does everyone else. The facts are showing that the unvaccinated are who are getting the sickest from COVID now. The right thing to do is stay home if you can’t get it. Don’t make anyone else pay with their lives because of your choice.
Will definitely not be taking the second dose. Im in my 20s and have had fibromyalgua for about 7 years. First dose put me in the ER a day later (joint pain everywhere, nausea, unbearable pain levels and chest pain) and immediately after had pain all along the left side of my neck and back/spine. Feeling unwell did not last 2 days like they said but around 3 weeks, and since i still have loss of appetite, random bouts of dizziness and severe nausea months later that required me to visit the ER to more times. I do not believe this vaccine is safe for everyone and should not be imposed on people. The effects are not felt equally. Especially for those who already have bad medical care or none at all. Theres risks either way and I believe it to be a personal health choice, as it only potentially mitigates the effects from covid. Trust yout instincts when deciding. I let myself doubt my own intuition the first time but I will never be doing that again.
I’ve had suspected fibro for a couple if years now and hadn’t had a flare up in a year until around the time I got my first shot of Pfizer in May. After the shot I had some fatigue, body aches, and headache for a couple of days, but the general all over achiness and joint pain never went away entirely. I don’t know though if that’s what caused it though, or if that was just a coincidence. I’ve been putting off my second dose because of it.
Is it common for the vaccine to cause flare ups?
Hi everyone, I just had my second Pfizer dose on 8/20. I had the oddest reaction right after, I felt euphoric. It happened the first time too but the second was notable and last for a couple hours. I had less symptoms the second time around. Sure I had some little aches, and my throat was sore. I woke up on Sat
feeling like I had the flu but it wore off by the afternoon. With the first shot I felt bad for a couple of days. I woke up this am with super minor aches. I can even call it a flare. Thankfully I have responded favorably. I don’t know why except that I think it has to do with my Vit D levels being higher than they have ever been in recent years. I think low Vit D levels have contributed to so many getting sick. The combination of blue light exposure, little time being outside along with sunscreen has created a scenario where our Vit D levels are depleted. I am in outside sales and drive in my car getting exposed to sun through my windows. They have a darker color but I think it’s just enough exposure to help my Vit D. It’s now at 85 and prior it was less than 20. I was really sick then. Now I am so much better. I hope everyone here can take something away from this information I’ve provided. I’m so glad I got it!! But get your vit D levels up it really does help!!
Cynthia I did give my experience on the Covid vaccine and why I thought I didn’t have any major reactions. If you don’t like my “opinions” then ignore them. Everyone here has an equal right to express their views and can’t tip toe around your sensitivities.
I want to hear peoples reaction to the vaccine not peoples opinions. I need this information to make a decision. Please stop with opinions.
I just got third covid shot yesterday. I feel as bad as I did the second time. It lasted quite some time. It took 6-9 weeks before I was back to pre vaccine state. I don’t even want to think about how I would feel if I actually caught covid. But its not always and only about me. There are fragile people around me.
The reactions to the vaccine can be greatly minimized by raising your Vit D levels beforehand. Get your levels tested, usually they run levels on everything. I have fibro and react to so many things. But I feel like I avoided the COVID vaccine reactions because I am outside for my job and my Vit D levels a higher than they have ever been. We use sunscreen, we don’t get outside, we spend all our time on phones and computers that constantly deplete this even further.
Had #3 Pfizer two days ago. Reaction as bad as #2. Chills, sweats, muscle aches, headache, neck pain, joint pain, fatigue, appetite loss. Two terrible nights so far. In and out of warm baths. No fun but wife is type 1 diabetic 59 years so we have to protect her. She has had mild reactions. My reaction is similar to my #1 singles vaccination. I didn’t get #2 shingles. However, i urge all FM people to be vaccinated against covid to the max despite the wipeout. I can’t imagine what a covid infection would do to us. I just hope that vaccination does not become an annual event.
I got my second shot Moderna 7-21-21 & my body has never been the same. I feel like my body is trying to fight off poison. I have severe joint pain,can’t sleep well anymore. Had blood work done all came back ok. I did have the virus in Dec my body fought that off just fine.I honestly believe that vaccine has triggered something in my body that my body now can’t fight off. I wish I would of never gotten it.
I had my first Pfizer dose on 1/9/21 first 3 days were fine then my fibro kicked in like never before aching and sore everywhere not looking forward to my second shot next week.
I just had my second vaccination. I felt as if my skin and muscles were being ripped off of my bones. My joints felt like jell-o. Any slight movement was the worst pain I have ever experienced. My body just feels exhausted. It has been 6 days since my shot and my arm is still sore.
First Moderna shot on August 19th. Migraine, nausea and my regular FM symptoms which are moderate to severe. 10 days later, I almost went to ER because I was in so much pain, I was vomiting. I went to the Dr and got a toradol shot ( had to ask, wasn’t offered) . Felt better for about 6 hours and right back to hell it was.
Got 2nd Moderna vaccine on 9/16.
Took nap. Woke up 4 hours later shivering, chills, 102.7 degree F fever. Vomiting. Pain was severe until I got my fever down to 99 with Tylenol and Ibuprofen the next day. The following day, my fever spiked again to 102. Vomiting and migraine. Pain in every nerve, joint, muscle and inch of skin on my body. I’ve come close to overdosing on OTC pain meds. No appetite and now I have diarrhea on day 4. No end in sight and feel like went a few rounds with Mike Tyson.
I can’t type anymore but I’m interested in following this discussion with my flow fibromyalgia peeps.
To Marjorie and Lana,
Marjorie that sounds really rough! Hope you recuperate quickly! Lana I had the Astrazeneca which is similar to J+J and I had all the terrible side effects. It’s taken me months to stop having pain and inflammation but I am coming around. Won’t do the 2nd.
Has anyone receiving the J&J vaccine had similar symptoms? I received mine in April. I had no initial reaction to it, but over the following months my pain has increased dramatically. This includes severe pain in my neck and shoulders.
it will pass but could take 5-6-7-8 weeks. Strange but second dose while being worse was short lived and about 2-3 weeks later I feel as if I more or less never had fibro. Same thing for booster.
I had my first Pfizer dose last Wednesday, felt fine after and my fibromyalgia has been at its worst since having it. I’ve barely been awake for more than a few hours at a time and my depression is worse too. How long does it take until you feel more normal? I’m struggling so much.
I was in a small flare up and having a few little sinus issues the week before my 1st shot. My dr. put me on steroids and antibiotics. When I went to take my 1st shot I let them know I was on steroids and why and the nurse said that it was ok. Ok I took my 1st shot. VERY VERY sore arm! And after a few days my head felt funny, my fibromyalgia started flaring worse and my hands and feet hurt! Bad pain like flu was coming but never did. 2nd shot… Fine the 1st day! Next day all hell broke loose! All within 1 hour after waking up 103 temp, in bed with aches and chills, stabbing pains all over like somebody took a knife and just random stabbed me and my head hurt so bad. This went on for 2 days. After that I haven’t been the same. Flare up won’t go away. The worst twitches all over and spasms from time to time, fatigue and trigger points are super sore. Arms and legs are still tired like I worked out for hours. It’s been over a month since my 2nd shot. I regret doing it!
1st dose I had a migraine, sore arm & was tired the next day. 2nd dose the same but I had a lot of swelling in my underarm. My underarm & breast were extremely sore for almost 2 weeks.
I just had my booster. Was in so much pain the day after I was in bed the whole day. The migraine was so intense. The pain was in every joint. I was extremely tired. Today (3 days later) I’m still sore in the underarm & breast but it’s much better. Feeling the fatigue but also much less.
I’ve had fibro / chronic fatigue for 23 yrs . I’m 61 and im severely handicapped by fibro . I was so hesitant to get the vaccine since I have such negative reactions to any vaccine but I was becoming more anxious knowing how serious this variant has become . My doctor approved me taking as much pain medication as necessary to get me through a bad reaction and so I decided to get my first shot a week ago . The first day I had a sore arm and slight fever . The train hit me the third day !!! I’ve been totally bedridden with fever, extreme body aches , back , shoulder, neck pain , stomach issues , bowel issues , joint pain , spasms and the worst headache I’ve experienced in years . Now 8 days later the back and joint pain is easing up but I woke up totally disoriented and feeling like I’ve been on a wild ride . I take morphine and Valium already but had to take more along with Tylenol and I found Buckley’s complete cold and flue helped . I’m not looking forward to a second shot but having health issues as well as elderly parents and daughters with compromised immune systems I felt I couldnt ride this out any longer .
I am 66 years old. I was diagnosed with FM more than 30 years ago. I have, of course, FM flare-ups like other FM patients. I tolerated the first and second Phizer covid-19 vaccines relatively well. Yesterday I received a Phizer booster and also a flu shot. They said it is safe to get them together. It might be safe but this time, I have been having an extremely painful FM flare-up I hardly slept at night and to my surprise, I had excruciating cramps — in addition to all kinds of aches and pains. Maybe the combination of the flu and covid vaccines is not good for FM patients…
You could be a Longhauler or have Post COVID syndrome which is very similar to Fibro . I think only time will tell .
I found out I have Fibromyalgia a few months after vaccine. I am in a flare up. Could the vaccine have done this or did I have Fibromalgia before vaccine and I didn’t know it. What do you think.
I’d recommend looking at the long list of fibro symptoms fo clues of symptoms you’ve had for years and never connected the dots. Vaccine caused me a huge flair too. Keyword fibromyalgia on pinterest there is lots there.
I can only speak from personal experience. I had the Pfizer shots and did not experience any extra Fibro pain from them. Three months later I caught Covid and the body aches were the worst I have ever felt. I don’t know if that is true for everyone who has Covid or if the Fibromyalgia made that part of it worse. I recovered from Covid but continued to have breathing issues, asthma attacks and nerve pain across my chest and shoulders. 3 weeks after getting sick I had the worst Fibro flare I have ever had. It was so bad I couldn’t wear anything but very loose fitting clothes like a long nightgown, sleeping was horrendous because my normally comfortable bed was too hard keeping me up all night. Nothing I seemed to do relieved the pain particularly in my legs. After several sleepless nights and days of barely being able to sit because I could not tolerate anything touching me I went to my doctor. At first she gave me gabapentin which just made me feel drunk on top of being in miserable pain. I told her it wasn’t working and she wanted to up my dose. I eventually convinced her to switch me to Cymbalta which has helped some. Some days are still worse than others but its definitely an improvement. Until I got the booster shot last week (Moderna this time). I’m back to sleepless nights and pain even though I am still on Cymbalta. Today is a little better so I’m hoping this flare continues to improve. So I would say from personal experience Covid can cause a fibro flare and so can the shot but I don’t think having Fibro made me more likely to catch covid in the first place. I just think I took a direct hit from my not old enough to be vaccinated kid who picked it up from another kid.
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