Frances McElroy asked 3 years ago

I’ve managed to live with Fibro for 26 years since being diagnosed at Mayo clinic, Scottsdale, doing as much naturally and balanced, along with managing stress, sleep, nutrition, walking, supplements, regular massage, and occasional Tylenol. I worked up until 6 mos ago, then finally retired at 68, yes, I was a full time Investment Advisor with Fibro! I tend to push through pain with activity, music, mental diversion such as reading, and privately spiritual prayer, plus good, long naps. Fibro flares were rare. I got the PFIZER COVID Vax #1 on 2/24/21 (no problem), then got Vax #2 on 3/18, 30 days ago. Since Vax #2, I have been going down hill the last 3-4 weeks with odd pain, lots of headaches, IBS, diarrhea, all my joints have “lit up on fire!” and I am more irritable due to all the pain and daily discomfort, plus starting to feel mildly depressed. I finally had my annual Internist appointment in person a day ago, and the Doc ordered 2 pages of fasting blood tests, which I’ll get on Mon 4/19, 1 mo after Vax #2.There is no information out on the Pfizer website. A month is a long time for side affects following a vaccination (I’ve had Pneumonia and Shingles vaccines, no problems). I now regret taking the COVID VAX. How long is this physical decline / major Fibro flare going to take, and what should I do?

SueZ replied 3 years ago

Before the vaccine, I had controlled rheumatoid arthritis.
I had the Moderna end of August 2021 after much consideration. My son was getting married in the fall and I wanted to feel safe around a crowd.
About 20 days after my shot, my joints started to have a flare up.
At first I just attributed it to being overworked.
So my rheumy upped my methotrexate…to no avail.
The flare continued but then new symptoms arose (mind you, I’ve had RA for almost 20 years, well controlled). I would wake up in the middle of the night with muscle spasms, excruciating pain in areas I never had pain. My nerves in my wrists, feet, hands would tingle and go numb night after night.
My labs came back with my SED rate and CRP levels elevated the highest they’ve been in 18 years.
My rheumy agreed that the new neuralgia and muscle pain was likely a kind of fibromyalgia as well as the RA flare. And, that it was probably a response to the vaccination.
He also said that it’s not a “rare” reaction in autoimmune folks.
He suggested I report it to the VERS site, which I did.
He said it was my choice, but since it’s now been 4.5 months and I’m still dealing with the issues brought on by the Moderna, he said I might want to hold off on getting the second shot.
Which I have.
This is the worst I’ve felt since my originally diagnosis almost two decades ago before starting meds to help control the RA.
I feel personally, that side fx are being swept under the rug.
Especially in people with auto immune diseases. Others are being told there’s no connection and that’s not true and it’s offensive to those of us who need heard.
My spouse did fine with both vaccines. So I’m not at all against it, but I’m against shutting down those who have been injured by it.
People with auto-immune should be cautioned.
Thanks for letting me tell my story.

128 Answers
Best Answer
Bonnie K. answered 3 years ago

After reading all of the posts on this site, I decided to skip the vaccine. I’ve been a hermit for the past 18 months, and I will continue to isolate except for runs to the supermarket (late at night, when store is nearly empty) and to the gas station, where I remain outside and use my credit card at the pump. I wear a mask EVERY moment that I am outside my house, except in my car. I have a 76-year history of autoimmune problems and fibro for nearly 41 years, so I am one of those people who have a hyperactive immune system. I believe I can’t take the risk of revving up my immune system any further. I’m sure my fibro symptoms will become exacerbated, and I’ll be disabled from the pain and lose all of my independence. I hope all of you who have a serious history of autoimmune problems will think carefully before you take the vaccine risk. Medical science is in its infancy where autoimmune disorders are concerned. If you go into a terrible autoimmune spiral from the vaccine, you will almost certainly not find a medicine which will stop the process. You will be at the mercy of the cytokine storm that has taken over your body and you will have no other choice except to live with the consequences. You don’t have to be vaccinated, if you are willing to isolate yourself until the pandemic has subsided in your area. Isolation seems preferable to me, if the other choice is a gamble with my life or at least my independence. I’m a widow who lives alone, and if I cannot function physically, I will have to move to a nursing home, give up my home, my pets, and my freedom. Not a reasonable alternative.

Ilse Tester answered 3 years ago

Hi Frances, I am sorry to hear that. I have been able to managed my Fibro also for years until I got my second Pfizer vaccine!! I wish I could find answers also!!!

Ilse answered 3 years ago

Thank you so much Frances, you are not the only one with major flare up due to the Covid vaccine! I am also looking for answers but at not avail.
Please keep me post it about your health sincerely wish I could have answers.

Thank you again!!

Leslie Snell answered 3 years ago

I had my #2 Pfizer vac on 4/21 & have experienced increased excruciating pain & symptoms from my fibromyalgia,chronic fatigue syndrome,& Irritable Bowel Disease. My daily maintenance medication for pain & migraines have not been sufficient. My dr prescribed additional rx for muscle relaxer & pain med for short term use hoping this flare will be temporary. I haven’t experienced this much pain throughout my body since surgeries. Wish I had done research prior to vaccine.

Sherrill answered 3 years ago

I received my first Pfizer vaccine on April 8th and still feel like I’ve been run over by a truck. I’m supposed to get my second one today and I’m petrified.

Ilse answered 3 years ago

Sherri, I am so sorry for what you are going through. I know exactly how you feel! My GP told me that I am not the only one that Fibro has flare up after the vaccine!! I haven’t feel this bad since 10 years ago!
I don’t think I am going to get a booster.
Thank you for answering. I truly hope that one day we can find answers!!

Daryl S. answered 3 years ago

I was diagnosed with fibromyalgia about sixteen years ago and received my first Pfizer vaccine on April 10. I was fine for the first day but ever since I have had unbelievable pain especially in my neck and shoulders, almost like they are on fire. I have read similar symptoms on this website. I am trying everything to deal with this from OTC ibuprofen and excedrin. I also take Gabapentin but even that isn’t helping. I am a recovering addict and I have been taking suboxone for a couple of years and that is the only thing that helps the pain. I cannot do anything except be in agony in bed or on the couch if it wasn’t for the suboxone. I am just taking a small dose, about 2mg, about every 3 to 4 hours. For those that don’t know about suboxone it has a small amount of narcotic and another ingredient to keep you from craving narcotics. It works really well and eventually I will be off of it. I feel so glad I found this website as I thought I was the only one dealing with this. I have also had body aches, a headache and chest pain. My regular doctor has never heard of any side effects like I described and neither has my addiction medication doctor but she said she would consult with her colleagues to see if they heard anything about it. Luckily I was able to find this website and I don’t feel like I am going crazy anymore.

ann viera answered 3 years ago

5/19/2021: Am now around a month after second Pfizer shot. Was doing great managing fibromyalgia until this past Monday. Thought it was weather change, but reading above, may be connection to vaccine. Do NOT regret getting vaccine, especially given part of country where we live. Am hopeful flare up will pass. Had mild reaction to first shot with metallic taste in mouth strangest symptom, and except for slightly sore arm, no reaction to second Pfizer dose. Visited this site to try to find recommendation for mattresses/mattress topper, didn’t find that yet (suggestions welcome), but appreciate very much the possible link between flare and vaccine. Thank you.

Karen Elizabeth answered 3 years ago

All of your answers make me feel that at least I’m not crazy!! I’m so sorry you’re all experiencing so much pain and misery. My story is that my Fibro has been well controlled for many years (I’m 66 and an active musician). I had even worked out hard for virtually the whole pandemic time (no gigs for musicians). I unfortunately took a hard fall on the slippery tub bottom when reaching for a towel and “massively” tore my right rotator cuff on March 9th. The next day I got my first Pfizer and the second on March 31st and had no reaction to the first one and only a sore arm after the second. I still, even with the shoulder managed to get some exercise in April and then May hit and all of a sudden my legs started to ache and then within days, every muscle and bone started to ache. I started having scary dizzy spells (just turning my head) and this whole past week and a half I’ve had mega, non-stop nausea and weakness (I had a gig this past Wednesday night and could hardly get my own equipment out and then back in my car…never a problem before). My internist had me get blood work done, especially C-reactive protein. Well for years and years that number has always been between 5-7. As of last Friday it was 31. Plus a few Liver tests were off too. It must have scared my doc as she now has me scheduled for a coronary stress test and a 24 hour heart monitor this coming Tues. What the heck?!! I swear that the vaccine kicked my Fibro and all my auto immune issues into hyperdrive!! I have been so depressed. I can just about handle the pain, but the nausea is the worst. And of course there’s no info on the relationship between those with auto immune issues and receiving 2 vaccines. These Fibro symptoms I’m experiencing are so much worse than anything I ever experienced before. I don’t want to get off the couch, have to force myself to eat (definitely NOT like me!), and force myself to walk my dog once around the block. My cardiologist told me at my visit about 7 months, that I have only a 2% chance of having any heart problem and now all this stuff comes up. I guess the dizziness plus the raised c-reactive protein and the odd liver tests tend to lean toward coronary. Jeeeez Louise! I’m scared out of my mind! Thank you all for reading. Please let me know what you think.

Rita answered 3 years ago

I haven’t had fibro pain for 2 years. Had 2nd dose of Maderna 2 weeks ago. The next day I had pain all over and its getting more severe every day, pain is worse than when I had cancer. I need help walking and I cannot I cannot work. Definitely will not get booster.

Ilse answered 3 years ago

I am so sorry that you are experiencing so many issues!! I had a flare up as well!!
I have been going to Physiotherapy which has helped, taking supplements eg. Tumeric, fish oil, B complex, etc., meditating and going for walks. I have good days and bad days, I am hoping that with time we will all feel better!!

Serena answered 3 years ago

I have managed my fibro symptoms fairly well for the past ten years and have avoided flu vaccinations on recommendation of my doctor, but made an exception with the covid vaccine, pfizer. It’s been nearly two months since my second shot and I have had so much pain, exhaustion, stomach issues, brain fog. You name it, I have it. I’m so frustrated. My doc says she is seeing this in many of her patients with history of chronic pain. She says to rest and wait it out. How long?! I have work to do. I’m pretty terrified.

Karen Elizabeth answered 3 years ago

I so sorry for anyone going through auto immune issues anyway, but this with the vaccines is a whole different animal! I\\\’m up all night (just backwards from everybody else – no internal clock!) and my nights have been terrible. Yesterday I had one good day, but by late night I was down on the loveseat moaning. I stayed up today so I could get a slew of new blood work. My doc said \\\”Hang in there\\\”! What choice do I have?!LOL! I called every person the operator gave me for our very impressive University Of Rochester Medical School. Looking for some help or some study going on. There should be a slew of studies going on, especially for those of us with pre-existing immune disorders and the longer term effects of all of these vaccines on us. I KNOW this DID NOT COME OUT OF NOWHERE!! I was told yesterday that the U of R\\\’s Immunology/Rheumatology/Infectious Disease department has my referral from my regular Doc, but as of yesterday, still had some questions and am not sure whether they will even take me. For God\\\’s Sake…What does a person have to have?!!

Nancy answered 3 years ago

I’m a 76 year old retired senior. I was diagnosed with fibromyalgia in 2004. I researched all I could about it and started taking many supplements (meds didn’t work). I’ve been in remission all this time. Until my second shot of the Moderna vaccine. After a few days of side effects, I seemed to feel fine. Then, all my fibromyalgia symptoms returned. Now I’m experiencing muscle aches, fatigue, fibro fog – all the demons I thought I had vanquished1 And I’ve now got bad arthritis in my hands, TMJ, and carpal tunnel syndrome. I don’t regret getting the Covid vaccine (the virus would have killed me), but I’m so disappointed that, after all these years, I have to start learning about how to live with fibromyalgia again.

Serena answered 3 years ago

I wish I had this information before getting to vaccine, so I could have prepped for it. I am trying the antihistamines now, and various supplements, even-though, it has been two months since the second dose. Too early to say, but my pain levels have been down the past couple of days. Perhaps because the antihistamines are knocking me out? Have not found an doc to help navigate. This is the Institute for Neuro Immune Medicine. I know my fibro/CFS is linked to an infection. of the Parvo B19 virus. Perhaps this may be of interest to some of you.

Elizabeth answered 3 years ago

I was flaring before my first Pfizer vaccine but right after that I went into overdrive. Severe muscle aches, exhausted, Costochondritis flare, nausea, etc. This has been going on since March and no doctor I have seen knows who I should see for this!

Lainie answered 3 years ago

I am about a month after my second shot of Moderna and having major joint pain, low grade fevers (99.6), diarrhea. It has been getting worse and worse and if I have a very active day I feel like I can’t move. I am happy to hear it’s not just me however, this completely sucks and there has to be a way to let the medical community know that people with FM are suffering.

ann v. answered 3 years ago

I have increased turmeric intake since reading the posts about post vax complications for FM. Homemade Pineapple juice popcicles with curry or turmeric mixed in before pouring into mold is best yet. Thanks everyone.

debbie kudrna answered 3 years ago

could any of you update how you are doing. I have not gotten the vaccine yet as i wanted to know how any of you are doing now.

Karen Elizabeth answered 3 years ago

It’s now been 3 weeks since my last update and just a few days short of 3 months since my second Pfizer shot. I ended up having to have a heart stress test, gut x-ray, endoscopy with biopsies of duodenum and stomach, and ultrasound of my gut. I have an MRI scheduled for next Saturday, plus have had a ton of blood work almost every 2 weeks. My Gastroenterologist is the first one to actually say to me that “the vaccine could very well have caused all my horrendous reactions of the last 2 months”. My GP is fully onboard now, but still no one knows for sure. I’ve increased my vit D and Magnesium as I’ve had muscle spasms in hands, arms, feet, legs and back, the like I’ve never known. I’m stretching and making myself walk briskly around the house every night. My GI Doc believes I have Pancreatitis with possible Gallstones, but hopefully the MRI will tell for sure. I’ve been seeing my regular Doc every 2 weeks and she said I lost 16 pounds in 2 weeks!! She and I were both shocked!! I certainly wanted to lose weight, but not like this!! I’m trying everything I can to keep myself hydrated and muscles loosened up. I’m eating as healthy as I can, which seems to help. Horrendous nausea and dizzy spells of the beginning of this experience have abated, but appetite is not anything like before vaccine. I really thought I had some kind of Cancer, but my GI says “No, no, no”! According to the results of the 2 biopsies she took 3 weeks ago. But I still have the MRI hanging over me, which is a bit terrifying, but will finally show a much more complete picture of my very angry Pancreas and Liver and God knows what else. I hope all those who have experienced hyper reactions to the vaccines are doing much better, as I certainly hope to be so I can get back to singing and playing for my peeps and just feeling somewhat “normal”. So far my husband has been taking all my jobs and will continue as need be. He’s my HERO!!

Serena answered 3 years ago

I’m doing better. After reading the information on the Neuro Immune Medicine website I started taking zyrtec and upped some of my supplements and within a day my pain levels came down and my energy has increased. I’m close to my pre-vaccine health. In my opinion the risks of a flare up are worth getting the vaccine (I had Pfizer), especially as you are twice as likely to end up in a hospital with the new Delta variant. Read the info on pre vaccine prep here before you get it.

Elizabeth answered 3 years ago

I am still feeling the same. If I had to do it all again I still would get the vaccine because I have diabetes among other things that make me high risk.

Nancy answered 3 years ago

My fibro symptoms have settled down back to before I got my second Moderna shot.  So don’t be afraid of getting that second shot.  Especially with the new Delta variant out there.  You need to be protected from this thing!!

Ilse answered 3 years ago

Thank you Serena for the link of
Upped my supplements and I am close to my pre-vaccine health as well!! Today’s news about the Pfizer and Moderna vaccines study found that could have long-lasting immunity for years, reported by The NY Times! Great news for us!
Wishing everyone health!!

Serena answered 3 years ago

That is great news!

Robyn R answered 3 years ago

I thought there was a connection between my flare and the vaccination. As everyone has reported, I felt good most of them time and thought I was in a remit then after the second vaccination in April I started to have the worst pain, fatigue, IBS symptoms and yes, some dizziness since my diagnosis. Then a friend with FM casually asked how I felt after my vaccination and we were stunned to compare our flares. I’m still glad I got the vaccination but I wish this flare would remit.

Rachel answered 3 years ago

Thank you for sharing all of your experiences because I was starting to think I was losing my mind. I am 6 weeks out from my second Moderna shot and I still am not back to my “old self”. The day after the second dose I had a fever of 102.7, horrible pain and horrible fatigue. The fever broke the next day but the pain and fatigue didn’t get better until 3 or 4 weeks after the second dose. I also ended up with a rash on my arms, hands, neck and chest. Then things improved a bit but now the past 5 days I have horrible stomach pain and fatigue and a temp of 99.1. I feel like the vaccine reignited my fibro.

ann v. answered 3 years ago

Hey, check out this book there are lots related of podcasts/videos. My PT has coached me to learn breath techniques in the past, and my husband first introduced me to value of exhaling and deep breathing, this book puts it all together and shows how breath work is undervalued.

ann viera answered 3 years ago

On the Breath book Web site is a video by Richard Brown. His wife and partner has fibro, they are psychiatrists who provide evidence-based breath work called Breath Body Mind: Claudia McNeel of A Time to Heal, interviews Dr. Patricia Gerbarg about Fibromyalgia. Important aspect to their work: integrative medicine with evidence-based approach. Certainly breath work was missing from my fibro tool box before I encountered their work in James Nestor’s “Breath” book.

debra kudrna answered 3 years ago

how are you all doing now? I still have not gotten the shot. No fibromyalgia symptoms for me been free of that for years and won’t go through that ever again just about didn’t make it with the pain so the vaccine causing that will not happen. I hope you all are feeling better I would really like to know how you are feeling

Karen Elizabeth answered 3 years ago

After being so sick for the past 2 months, I finally had my abdominal MRI. No cancer (knock wood), and everything looked pretty good, a few tiny cysts in my kidneys and one in my liver, but not the cause of how sick I was. I was afraid either they would find something horrible or nothing. So it does still leave a bunch of questions, but my GI firmly believes I had a nasty case of Pancreatitis caused by the vaccine. I am better, even though still having some hinky blood work and still some aches and pains. I just gave myself a B12 shot, so hopefully that will help. I think it’s just going to take time. After all is said and done I would STILL GET THE VACCINE. With our Fibro/Auto Immune issues, there’s no choice. With our issues, ask yourself how we fight these variants with our hands tied. If you haven’t gotten the vaccine…GET IT NOW!! Just be aware of your body and in touch with your docs, so you can get on top of any reactions quickly. On the happy side…I played my first gig in over 2 months and it was heavenly! I still remembered how to sing and play guitar! LOL. No hand or feet cramps, yayyyy!! The folks were delightful! At least I have a great GP who see’s me (through this) every 2-3 weeks, so if anything else crops up (God forbid), we’re on it! Take good care of yourselves and keep a journal of all the things that come up around your vaccine and/or flare. I’m sure there are many of us with Fibro/Auto Immune Issues who have had no adverse effects. Get your vaccine!!

Michele answered 3 years ago

Just started reading everyone’s comments. Glad to know I am not alone, however, I took the J&J vaccine on 5/28. I am 55 years old, in menopause and wasn’t concerned about the other issues with the vaccine. But about 3 weeks after receiving the vaccine I noticed my hands ached, chalked it up to working too hard with the mouse and keyboard at work. Which would also explain the stiffness in my neck and shoulders. But then I noticed I would wake up in the night and my hands would ache as I moved my fingers or hands. I can list everything I deal with on a daily basis, but don’t want to bore anyone. But it ahs now been almost 2 months since I had the vaccine and I continue to take a 800mg Ibuprofen every night and every morning for a month and a half, along with a water pill the doctor added to everything else. I take Cymbalta and it was helping my fibro until the vaccine.

Sandy answered 3 years ago

I had my 1st Pfizer jab 8 July and was perfect till day 4. I have fibromyalgia and Rhematoid Arthritis. My fibromyalgia has been great for about 8 years but I still have Rhematoid flares. However after the jab my joints and muscles are so sore. After reading everyone’s comments I realise it’s my fibromyalgia raising its head again as every part of my body is sore. No pain meds seem to help so given in today and off to the doctor for a pain injection. So nervously awaiting my 2nd dose in 4 weeks time but like many others say, I don’t regret the vaccination. Hope you all feel better soon.

Carmen answered 3 years ago

Bonnie K. I can totally relate. I pretty much have been a hermit since the pandemic started too. I live alone and already had to live isolated anyways due to severe chemical sensitivity(basically most any chemical/smell triggers bad migraines for me so needless to say it’s hard to go out in the world where smells are everywhere). I’m 42 and been dealing with this since I was about 22 years old…so 20 years now and luckily I still have my mom around to help me like she picks up groceries for me and drops them off (as I have no car). I do miss doing things like going out to a movie once in awhile or to eat or a concert but it’s not worth the risk for me right now either because with all the horror stories I read I don’t feel comfortable getting the vaccine. So I just keep isolating…just wanted you to know you are not alone.

Rob answered 3 years ago

I have been advised by my rheumatologist, primary care physician, and neurologist not to get this vaccine. Between having fibromyalgia and being Rh negative, there is about a 93% statistical chance of immunity, and I am taking anti-retroviral‘s as a precaution. Between the two, I am more protected. Also, people with fibromyalgia have not gotten anything more than mild cases of Covid. There is only been one documented case of hospitalization. The vaccines only protect against the severe form

Nathalie answered 3 years ago

Good morning,
I have recived my second shot of Pfizer a month a go and since 2 weeks I have pain all over my body. Did someone get better after the fibromialgia flair up? I m so sade! I was doing ok but now…it’s a nightmare! Thank you!

Carolann answered 3 years ago

I am truly sympathetic to all of you Fibro people. I am a retired 62 year old. I was diagonosed with Fibro by a Mayo trained doctor about 35 years ago. I’ve managed it somewhat. Then I got my first Pfizer vaccine and was sick for a week like I’ve never been before. Now my Fibro has flared to the max! So much pain and headaches. I’m having shortness of breath while sitting still. The fatigue is unbelievable. I’ve felt like I had bowling balls attached to all my arms and legs. It’s been 3 weeks and I’m having a horrible flare. I’ve been doing stretching and some movement exercises to help with the muscle pain. I have spasms in strange places, like my side, abs or my shoulder. IB helps some. Everyday is something new pain wise. I am scheduled to get the 2nd dose next Monday and am really wondering if it is worth it. I do have a college aged daughter who visits me, and she is totally vaccinated. But, can she make me ill? My doctor is pro-vaccine. My pharmacist is pro-vaccine. I am very careful, wearing a mask IF I go anyplace and scrupulously clean. I have all groceries and supplies delivered. I was fine, other than lock down depression, until I took the vaccine. I don’t believe these medicines are for everyone. Certainly not for me.

Lisa answered 3 years ago

I’m FROM south Africa and My friend who is 39 has fibromyalgia and she got her second Pfizer shot 5 days ago and she is down. She thought it was covid but then she read that it could be the fibromyalgia and the vaccine as some people she’s read about have had same symptoms she said she has nausea, dhirrhea, dizzy.
Has anyone found a “solution” that had has helped you. Like I saw a comment about Tumeric, has that helped.

Shame she is tired of taking medication. I think she’s on 9tablets already just for the fibromyalgia.
Any natural remedies anyone can recommend for the discomfort etc.

Serena answered 3 years ago

Carolann, I don’t know where you are located but I have friends in England who stretched out the second dose to 12 weeks. It may be a matter of just putting off that second dose till you feel more stable. There has been some interesting discussion on this UK site.
My docs have not been able to do more than treat me with H1 and H2 antihistamines. They did help with the pain right away, it has taken much longer for the fatigue, brain fog and stomach issues to let up, but I finally (15 weeks) feel like I’m pulling out of it. I’m also under a lot of stress and have not been able to rest as I should so that may have prolonged recovery.

Elizabeth answered 3 years ago

Just coming back to say there’s been no change for me. I’ve been in an increased Fibro flare since my first Pfizer vaccine in March. There’s been no answers and I’ve just gotten used to feeling worse since I’m now five months into it.

Lydia answered 3 years ago

I was diagnosed with Fibromyalgia 30 years ago and have been able to manage the pain and work full time till I was 65. A month after my second dose of Pfizer I started to have increasing pain, especially headaches, shoulders, back and arms. 1-1/2 months after the shot I woke up with severe pain in my jaw and was diagnosed with TMJ. Regular OTC NSAIDs have not helped with the pain. Have not been able to sleep more than 4-5 hours at a time. I have NEVER felt pain like this and the fatigue has been overwhelming.
I am thinking of everyone here that is suffering!

RobynR answered 3 years ago

My flare ended after about 3 months. I’m feeling really good now and no longer exhausted. There is light at the end of the tunnel. Hang in there everyone it does get better.

asa answered 3 years ago

Please. Will someone update their experience? I had the and dose of Pfizer July 9th and since then my fibro, cfids and other illnesses have been beyond anything I’ve dealt with since I was nearly bed-ridden many years ago.
I trust God has me. But hearing something about anyone’s recovery would be encouraging. Things are just so incredibly hard now – and I live alone with no support.
If you did recover some or any – how?
Even my stimulants do not work now. I am also experiencing a severe depression, that presents as typical depression but it’s not like anything I’ve had before.
The day I got the 2nd shot I was in a relapse but had a great attitude and my energy was alright all things considered. And medications did work – now they do not.
Please. Any one with info or website links. Please share!!!! :).
Thank you. May God Bless you ALL and keep you safe and in His will. Amen.

ann viera answered 3 years ago

In answer to how am I doing for those who inquired above? Much better now that I’m attending to breathing, I have a lot to learn. But getting a lot of relief for very little practice. Here is a series of three breathing exercises (Breathing for Transformation (Dr Richard Brown)
Streamed live on Apr 5, 2020 plus tapping, which relieves fibro pain in ankles, etc. Do try trapping. Also check out new book “Inflammation” by Rupa Marya and Raj Patel featured 8/2/2021 on

Erinn answered 3 years ago

I am considering getting the vaccine, though after looking through what many of you have experienced afterwards makes me hesitant. I’m 29 years old, I was diagnosed with fibro this year and I also have Chiari Malformation (type 1). I want to get the vaccine because my mom, who lives with so many different autoimmune issues (fibro, CFS, mass cell, etc.), is not able to get it. Obviously it would be the best option due to how quickly these new variants are spreading. Though managing the pain and other problems that come with my health issues day to day is difficult enough, especially when holding a full time job. I guess I’m just wanting to see what others would suggest. I am considering Pfizer since that seems to have a higher percentage. Thank you!

B answered 3 years ago

35 year old male here. I got my first dose of the moderna vaccine 32 days ago and the first few days were fine, but then I began a fibro flare that has been relentless and continues to wreck havoc on my body. The only time I have ever felt like this was during my original viral onset that happened a decade ago. It\’s scary to see the return of all these symptoms that I thought I had long since put behind me. I\’m not going to advise anyone whether they should get the vaccine or not, people have to make their own individual risk assessment in regards to the virus and vaccinaations. At this point I\’m fairly confident that I will skip the second dose and focus on trying to get this flare under control. I saw someone previously say that it feels like they are learning to live with fibro again and I couldn\’t agree more. This really sucks.

Colleen Moseley answered 3 years ago

Holy cow!!! I couldn’t understand what is happening to my body. My neck and back feel like there is a fifty pond weight on it. It has been a week. My legs feel like noodles, I have heart palpitations every time I stand for too long. My body aches are terrible, my nausea is off the charts. I just lay in bed. Try to get up but feel so dizzy I have to go back to bed. And get this. My lymph nodes in my neck are so swollen that when I put pressure on them, they crackle. The swelling goes down when I don’t speak. Thank God I found this page! I tried to post questions about adverse reactions on my fibromyalgia support group on Facebook, and the admins refused to post it!

RobynR answered 3 years ago

Each of us has to choose what is best for ourself. If I had to choose again, I would get the vaccine, even though it triggered my worst flare ever and it lasted three months.

Carmen answered 3 years ago

RobynR thanks so much for the info letting people know where to post adverse reactions so many people with fibro are having…I do hope they take it seriously and figure out a solution so there isn’t so much suffering.

RobynR answered 3 years ago

All of us should post about our experience on the Health and Human Services vaccine adverse effects reporting system in the US (known as VAERS) here is the link. The can’t fix what they don’t know about.

Carmen answered 3 years ago

Someone mentioned that they wish they’d figure out why so many are having such bad reactions. I wonder if it is the vaccine technology…I was reading some promising articles about the Novavax vaccine in which it said that vaccine uses the old technology (like the kind used for many of the vaccines when we were kids) and it said it would possibly be a solution for those with autoimmune issues who can’t get the current vaccines. I know there is some debate in re: to fibro being autoimmune but it seems to make sense. I wish so bad they’d take all of those who are suffering so much from the vaccine seriously and really look into the Novavax (or another one if they could develop one) using the old technology so people with autoimmune issues are more safe with getting it and maybe wouldn’t have such bad reactions. But for now it looks like they are more focusing on other countries w/ Novavax and not the US…but I try to keep hope. In the meanwhile I’m just continuing to isolate which is a bummer cause I live alone and it’s been a year and a half of this but I try to keep hope there will be something on the horizon. Is there a place for people who are reacting to report it so that they are made aware of this and hopefully figure a solution so that it’s not such a dire choice for us? Wishing all of you healing.

Rachel answered 3 years ago

I agree with Robyn. Even though I’m about 10 weeks out and still struggling, I’d get the vaccine again. I just wish someone could figure out why some of us had such a reaction and prevent it from happening in the future.

Jenn answered 3 years ago

My mother is 68 and suffering terrible fibro flair up since the day after taking the second shot of the pfieser vaccine. That was about 3 weeks ago.
I note in reading the comments here that people refer to increasing their supplements – could you share with me what supplements you are taking that you feel have helped your go to flare up? Mum is in agony and I would like to help her as much as I can.
Thank you

Sandra answered 3 years ago

I just had my first dose of the Pfizer on July 22 and was due to get my second dose today. I have decided to postpone indefinitely. So glad to find this website! For the last week I have had bad fibro flare and extremely high blood pressure and headache. I have been on the same bp meds for over 20 years with absolutely no problems. Now I am taking double dose and it is still to high so sometimes take triple dose. I feel awful! My energy is at an all time low and I can’t take ibuprofen due to diverticulosis. I was so desperate due to the pain that I took some a few days ago and ended up with diahrrea. Absolutely cannot due IB anymore! My doc doesn’t seem to be concerned about the high bp. I am typically a very active person and I eat mostly organic foods and take lots of good supplements. Doc’s answer is Valdium and anti-depressents! I am not typically a depressed soul…I am usually very optimistic. Not wanting to get hooked on mind-bending and possibly addictive stuff. I’ve had fibro over 20 years and have it under control until now with no prescription meds.

Jillian P answered 3 years ago

Hey guys. I’m a 20 year old girl with no prior health conditions. Never had any fibromyalgia symptoms before my Pfizer shot. A week after my second shot, I started getting muscle spasms and palpitations that kept me up at night, which soon turned into pain in my lower back. I started having problems eating and low grade fevers. The muscle pain spread to other parts of my body (neck, abs, etc). Now my legs and arms have started getting so weak (almost numb). I’ve been so dizzy with raging headaches. I’ve had a million tests and no one knows what’s going on with me, but doctors have been starting to mention Fibromyalgia. I’ve never felt so dead in all my life, but so many tests are coming back clean. I guess I’m going to have to live like this now. I’m desperate for a solution. These flare ups have been so bad, I’ve been unable to function and likely will have to cancel going back to college. Thank you for providing a community for people to talk about this. I’ll update this soon, and hopefully things will start to make sense as I get a proper diagnosis.

Carmen answered 3 years ago

Colleen, Yes I agree it is very scary esp for those of us with health issues. I really do wish there was a way to report it en masse to CDC or somewhere like you said or get it out there more so that they could hopefully do something about it and figure out why so many are having such a bad reaction. Or use different kind of vaccine technology for those w/ autoimmune issues, etc. Just still isolating for now and trying best to stay positive. Wish you all well.

Colleen Moseley answered 3 years ago

Agreed,I would like to see if there’s a way to report it to the cdc, en masse. Carmen, they are just not informing people with diseases, they seem to be squashing it, to ensure more people will go. If the public knew about our situation, it would create more doubt as to whether they should get it. It’s scary

Denise answered 3 years ago

I would like to thank you all for your messages. I do not want to take the vaccine at this time because of my 32 year struggle with fibro, CFS and hypothyroidism. I have had multiple reactions to the flu shot, which I have not taken for at least 20 years, in addition to other medical reactions to medications and any type of stimulants. I recently have been given an ultimatum from my employer…..vaccine or termination. I have little to no support at home and am scared to death to being forced to put this vaccine in my body knowing the affects it will have. I too believe there is little to no documentation on the side affects of this vaccine. This is the best forum I have found to date. I understand from my physicians and other people working in the medical field that the cases of Cardio and Pulmonary issues, of patients after taking the shot, has increased dramatically. I also am aware of several colleagues that have had organ issues after taking the vaccine. Unfortunately, I also agree the medical community is not reporting this data to avoid further issues with the public. While I understand and accept the affects of covid, I am doing what is necessary to protect myself and others by limiting my time away from my home and masking everywhere, I just wish I was not in a position of choosing my personal health struggle over my job.

Brandi Campbell answered 3 years ago

Has anyone had covid prior to getting Covid vaccine? I am a nurse that is mandated to get the vaccine and thinking about leaving the field because I don’t want the vaccine. I have found that chiropractor every 6 weeks and Acupuncture has worked best for my fibromyalgia. In the beginning I did acupuncture 1x/week for 2 months then once monthly. Acupuncture not dry needling there is a difference but after laying in bed all weekend every weekend for 10+ years. I’m scared to get the vaccine. I have had covid so I have antibodies.

Cherokee Warrior answered 3 years ago

Hello everyone. I am just reaching out. I am so glad I found this group here having a conversation. I should have reached out to NFA a long time ago. I have always felt like I have to do things on my own, because I have had fibromyalgia for 32 years, and was diagnosed at the tender and tough age of 16. To make it worse, I grew up in an alcoholic family that did not believe me and that was a horrible feeling, so I grew up just feeling I had to “take it all on” emotionally and the few groups I have tried to join locally are run by a gaslighting, toxic woman who wants to talk the whole time and control everyone in the group, and I have had other horrific experiences.
I just want to tell everyone that I have lost six family members from COVID and this is a very hard time.
I strongly believe in the COVID vaccine and I have had Moderna and got my second does on March 30th. I did have extreme side effects. I got a rash all over my stomach that the CDC did not know what to do with when they called and said, “That is no way that could be caused by the vaccine” and hung up on me several times!! Yep! And my doctor after much reluctance finally admitted it was because of the vaccine. I had fatigue and a strange restless feeling I cannot explain. I was ill all of March and part of April. I had two doses, one on March 1st and one on March 30th. I AM STILL VERY PRO VACCINE after watching people die…six of them. So, I believe in the vaccine. My doctor is a narcissistic jerk and I need to find a new doctor, but he keeps saying that fibromyalgia is not an immune disorder and we have argued about it. I have sent him articles, but he ignores me, doesn’t respond, and probably ignores them or has not read them.
Anyway, I want to get the third Booster even though others do not recognize it as an Immune Disorder and the CDC in America has stated that you do not need a doctor’s note, but I am wondering if anyone else out there WANTS to get the booster and what you recommend if they start to question me.
I don’t care what ANYONE says. I believe this is an Immune Disorder and I am a clairvoyant and have always known that.
I just want to know what anyone who WANTS to get the vaccine thinks.
Also, by saying I believe in the vaccine, I do not want any nasty comments and I do not want political debate.
I just want to know if you are going to get the booster if you are in the United States.
I am sending love to everyone and peace to everyone today. Light, Rebekah

debra answered 3 years ago

To all that got the vaccine I am happy for you keep getting the boosters. Don’t ever make me feel bad because I WILL NOT ever get the vaccine. You keep your get the shot to yourself and never post your anger about someone not wanting it on this site again I am sick of your bully us.

REBEKAH answered 3 years ago

Frankly, as someone with fibromyalgia for 32 years who has suffered a lot, I am disgusted and angered at all of the “anti vaccine” posts on here. I am ashamed of this organization for allowing them up in such strong droves.
So, I just want to let you all know that I am sorry you got side effects. I did too. I was very ill after my first, second and third, but each time, it got a little better.
AND YES, it probably does cause a flare b/c so little is known about fibromyalgia and how vaccines affect us.

Ms. B answered 3 years ago

Hi everyone I am 53 and I reluctantly got my first moderna vaccine 2 weeks ago. I didnt have any initial side effects and looked forward to getting the second shot until 3 days ago when my 7 year remission fibro flare came back with an evil vengeance. Cymbalta is not working to ease the pain. Every part of my body aches except for my lips. I am in rehab for a previous stroke but I dont think I can participator in physicals therapy while I feel like snakes are moving under my skin and I was in a terrible car accident after being in a kickboxing fight. This pain is too much for me to subject myself to again. I will purchase professional protective gear and stay inside my home if necessary to avoid covid but not another shot. I wish there had been warnings about possible side effects for those with fibromyalgia. I thought I was doing the right thing to protect myself and others. But Im in bed suffering. peace mercy and blessings to all.

Lynne answered 3 years ago

I had the most excruciating chest pain after my phizer vaccine -ER treated I Was in ER three times and they gave me cortal and heart XRAYS , ECG and blood tests . I was given a strong injection of cortisone and diazepam and pain medication . Been under a specialist since he said possible acute Percarditis versus reactive arthritis flare resulting in Costal chronditis.
Anyway heaps better and the heart is fine. But I don’t have the courage or the inclination to have another Covid vaccine , as may not be so lucky next time,. I am concerned that this month august 2021 the press released that most of the deaths in hospital were over 70 year olds all doubly vaccinated ( phizer only used here for over 65 year olds here in SPAIN Apparently older people produce less antibodies due to weakened aged immune systems .

Donna answered 3 years ago

I had the J&J shot in March and have fibro and osteoarthritis and excels My flare ups are still on going but I also got lipchen simplex chronicus on two spots of excema on front of ankles (hard red scales) that are supposedly to be from scratching which I have never scratched. They still have not gone away after 5 months. My flare ups are ten times worse than they used to be but my biggest and most severe complaint is the constant brain fog can’t think straight can’t process verbal communication am overwhelmed by just about everything have daily crying spells and my insomnia is worse even though my Doctor upped my gabopentin. Just relieved to know others are experiencing issues too. I actually was beginning to question my sanity. Your messages are giving me hope that this will all get better!! I am an identical twin and my sister who also has fibro is also experiencing severe flare ups

Louise O\'Donovan answered 3 years ago

Hi Rebekah, I’m not in the United States but in South Africa. My heart went out to you when you said your Dr is Narciccistic – that could possible in itself worsen your fibromyalgia! I have an incredible Dr who diagnosed me with fibromyalgia after coming out of an abusive marriage with a narcissist. Search til you find one, it’s worth it!
I had the Pfizer Vaccine 2 days ago and came searching here for answers because I could not believe that the vaccine could make me feel so horrible and felt so much better after reading people’s stories! That deep bone ache, no way you can sit or lie that doesn’t hurt whatever body part is touching the bed or chair – but I also believe in the Vaccine, lost too many people! The J&J has made some friends that are super healthy, really sick, probably because it’s all in one dose, but I took what I was offered.
Thank you for this space and don’t be discouraged. Ditch the people that don’t understand (or don’t talk about fibro with them) but to find a Dr that understands is so important! Sending hugs from afar!

Jennifer answered 3 years ago

You all sound very balanced in your opinions and experience and they’ve been very helpful
Unfortunately where I live in NZ fibromyalgia is not recognized as a disease, I have had it for many years and really feel for young people with responsibilities (I’m retired)
The common theme among people with fibromyalgia is their appreciation for life .Go well ..

Mary answered 3 years ago

Hey everyone. 30 year old female here. Pfizer shot 1st dose: mild arm soreness (the type of soreness you would feel after a workout)
Second dose: this Monday (I’m nervous after reading all these posts)

To put in context: last year I had the most horrific 8 month flare. I couldn’t eat, sleep, walk. Carpal tunnel syndrome, tmj, 6 anaphylactic reactions, Lost 30 pounds from inability to eat. Nausea from the pain. I won’t go into detail but I never felt pain like that ever. Since then I have “recovered” and I’ve gained some weight back (thank god) and im able to walk, eat healthy and I manage my fibro symptoms. Im worried last years flare comes back. Pray for me and send me all your love. I’ll keep you updated on how the second one goes. Oh, just to mention I’m highly allergic to naproxen, alleve and ibuprofen. It’s gonna be interesting….

K answered 3 years ago

I had my first Pfizer shot on 4/4. I was completely fine until 4/9. Then came the flare from hell. Similar to what you all described. I touched it out until the 17th but then asked for Prednisone from my primary doctor (my Rheumy wouldn’t prescribe them because she wanted me to continue creating antibodies). I did a 5 day course, and by Day 3 – I felt so much better. After Day 5 I was back to my normal aches and pains. I took an antibody test before starting the steroids, and it was negative (taken 13 days post 1st shot). My ekg on day 13 was abnormal and I wore a heart monitor and that showed an ectopic heartbeat. Lab work was normal (other than markers that insinuated the vaccine was indeed doing something). After that experience, I made the decision to not get the second shot. Until today. Today, I got the second dose – 4 1/2 months later. Very nervous about the pain to come, but knowing that Prednisone can again slow down whatever and make me normal again – is giving me hope. I will update to see how it goes. If it’s the same experience, this will likely be my last shot. Good luck everyone!

Megan answered 3 years ago

Thank you all for your input! I’m 17 and know no one else with fibromyalgia and have been experiencing a flare up since being vaxxed. I feel not as alone now seeing it’s not just me! If anyone has any suggestions on supplements or anything that helped calm the flare up back down please let me know!

Kyle answered 3 years ago

Hello K

My wife has Reactive Arthritis. It’s day 50 now since her first Pfizer dose. She has been flaring ever since her first dose 50 days ago. She has not had a flare up in over 10 years until the first dose. She had to deal with many symptoms incl palpitations, joint pain, brain fog, tinnitus, chest pain etc.etc. Over the last week her symptoms lessened but she isn’t out of the woods yet. She seems to be having more good days than bad days of late.

She was due for her second shot a week ago but has postponed it because she is terrified about reigniting a flare up.

Could those who had a flare up after the first dose please let me know what happened after there second dose so that she makes an informed decision.

Thanking everyone in advance for their responses.

Christie answered 3 years ago

I want to cry reading all of these comments. I thought I was crazy! I got my 1st Pfizer shit on 8/27. The first day my arm hurt some and next day I was really tired. Following day I just felt off. Next day my neck and shoulders hurt so bad. My arm out had developed a raised irritation but no rash and my right breast hurts as well. It’s like the nerves are on fire. I haven’t had a flare in about 7 months but after reading all of your comments it’s all making sense. All of the tender points are active with pain. Fatigued as well. I’m so scared to get my second dose but I am more scared of getting covid at this point. I had a massive heart attack in February and have diabetes, thyroid disease, sleep apnea, asthma, fibro. I just don’t think I would do well without the vaccine. Praying that I don’t go thru this double after my second dose. So glad I found this site. I hope all of you improve 😞 I forgot to mention that I have had the ibs and nausea as well. I plan to tell my primary doc as well. Hopefully all of our symptoms will be noted and used in the future for fibro patients and this vaccine

Megan Brown answered 3 years ago

I had the first Moderna shot with no issue, second one I had chills, but the third one really did a number on me – I could hardly walk, my husband had to get me out of the chair and was ready to put me into assisted living. I have been having shots for my back and also have essential thrombocytis which means I make too many platelets and am on chemo for that. I assumed my reaction to the third shot was because of those issues so it has been interesting to see all comments you have made – I really hadn’t put 2 and 2 together and thought of fibromyalgia – thank you for your insight!

Megan Brown answered 3 years ago

I had the first Moderna shot with no issue, second one I had chills, but the third one really did a number on me – I could hardly walk, my husband had to get me out of the chair and was ready to put me into assisted living. I have been having shots for my back and also have essential thrombocytis which means I make too many platelets and am on chemo for that. I assumed my reaction to the third shot was because of those issues so it has been interesting to see all comments you have made – I really hadn’t put 2 and 2 together and thought of fibromyalgia – thank you for your insight!

Karen Elizabeth answered 3 years ago

Hi All! It’s been 2 months since my last update. I am doing much better (recap:March 31st 2nd Pfizer –> Within 3 weeks –> muscle spasms, muscle cramps, pain everywhere, nausea like never before, headaches, dizziness, joint pain everywhere, extreme weight loss, malabsorption…AND Pancreatitis!!) ). My blood work had been crazy and they still don’t know exactly what it was, BUT both my GI and GP now DO think it was the vaccine. The one thing that just started a few weeks ago is even though my hands feeling like mitts was one of my first symptoms months ago, now my left hand feels asleep ALL the time, like I’ve been sitting on it for a month!! My left middle finger is the worst and is now tightening up (I feel like my ligaments might be shrinking). I know this is still part of my hyper immune reaction to the vaccine. I will be seeing my doc this Wednesday and again will push for a Rheumatologist (have not been able to be seen by anyone yet, as I think you have to be deformed by Arthritis to see a RA Doc in this city!!!). I just saw my best High School friend when she came on the tour boat I was playing music on this past week. I hadn’t see her in years and so filled her in on my saga. I had ended our conversation by complaining that it seems like NOBODY had done any research into possible adverse vaccine effects. She just messaged me with this very important number *****FDA/CDC VACCINE ADVERSE EVENT REPORTING SYSTEM -1-800-822-7967******. I will certainly call them on Tuesday. Does anyone have any suggestions on how to ease the symptoms in my hands? What seems to have helped me with everything else is 5000IU Vit D, Magnesium and increased protein consumption (I wasn’t absorbing any protein), plus 2 Atkins protein drinks a day. As for Vaccine advocacy, I’m still for it. Even though there were moments that I felt like it might be better to just be gone (because of being so sick), IT IS STILL SO MUCH BETTER NOT TO DIE OF COVID OR GET ANYONE ELSE THAT DEATHLY SICK!!!! I also believed on some level, that WOULD get better…And I did!! Now just have to take care of my pesky hands and always be on top of your Docs and health care! PLEASE CALL THAT NUMBER OF THE FDA/CDC so they have an accounting of us fibro folks…AND…Best wishes for healthy, happy days for us all!

Lisa answered 3 years ago

I had the Johnson & Johnson on March 31. My Fibro was totally not an issue in my life. I rode horses daily, lifted weights, had tons of energy. As soon as I got jabbed that all ended. It is now September 4, 2021 and I am a mess. It started fifteen minutes after the shot when my cheek swelled. Then came the severe body aches. swollen knee which was checked by my ortho and there is nothing there. Had full blood and organ analysis…I am as healthy as can be short of the Fibro, of course. I have had the following over the course of the past 5 months…tinnitus, body aches, swollen ankles, nerve pain down my right arm, headaches (I never got them before this), shortness of breath out of the blue for no reason that suddenly goes back to normal, weight gain especially abdominal and I do not eat junk, rashes on my calves, fatigue that I want to put my head on the table then suddenly it goes away, dizziness, brain fog, misspelling words and I am a professional writer so that is not me, feeling cold, sweating, IBS, depression…I HAD NONE OF THIS PRIOR TO MY COVID VACCINE. I reported all this to the CDC and they phoned and asked a lot of very general questions. My primary care physician has seen many vaccine victims over the past months and my partner’s neurologist has seen a ton of people with headaches with no other causes. I keep hoping I will get used to the tinnitus but I can’t. I was very active before March 31. Now I am basically stuck at home suffering. Now they want us to get a booster?

Meredith answered 3 years ago

I started having a bunch of new symptoms headache, which has been unremitting for several weeks and new cramping leg pain, joint pain in my hips and knees with and without activity, wakes me from sleep- this started shortly after having my 2nd vaccine – Moderna, called my doctor to discuss, and he said it sounded like I was having a fibromyalgia flare. Ok, but I have never been diagnosed with Fibromyalgia.

Nakei answered 3 years ago

I was finally diagnosed with fibromyalgia about 8 years ago. I got my 1st shot of Pfizer vax in July and the 2nd in August. The first shot I experienced pain from my hand up to the injection site and across my chest for about 3 days. After that, I had pain and swollen lymph nodes in my armpit for about a week. After the 2nd shot, which I got in my other arm, I had pain at the injection site for about 3 days. I did have a flare up after the 2nd shot, but I contributed that to stress and weather. If you haven’t been vaccinated yet but plan to get it, I would not do the both shots in the same arm. Continue to do whatever normally works for you to manage your symptoms. I will note that I also had COVID in January 2020 and February 2021. The first time, I felt like I had been ran over then balled up and thrown down several flights of stairs. The 2nd time wasn’t nearly as bad, but it was still painful. I’ve also had shingles in the past and ALL these illnesses only intensify fibro symptoms. Get vaccinated if you can against COVID and Shingles.

Ms. B answered 3 years ago

Thank you Debra for your compassion and for advocating for those of us who have the right to choose how we live our lives. I personally dont view death as a sad or bad occurrence. I consider it a transition which is why I respect the opinions of others who are simply looking for a safe place to discuss their anxiety and suffering while we are living on earth. There is no way to compare pain, suffering nor grief so I would never dismiss another person’s need for consolation or compassion. I have the God and government given right to chose what’s best for me and I choose to protect my best interest by not getting another vaccine that has me in bed all day without eating and wearing briefs so I wont wet my bed. I have had fibromyalgia since 1992 and my other chronic health conditions like lupus, major depressive disorder and diabetes are affected by fibro flares. My intention for posting here was not to offend anyone, I was simply sharing my experience in case someone else was concerned about how the vaccine could potentially affect them. It is their right to decide but they also have the right to be informed.
I am not a hostile person, so I refuse to answer to hostile and rude behavior. Thank you all for sharing your experiences. Peace,mercy,blessings and light

Anastasia answered 3 years ago

Hi experts,
what do you think about my case? I have no fibro diagnosis but the symptoms after vaccination seem to be similar to what you have experienced. My whole body is burning since 4 months after first shot, especially my legs and face. My head feels heavy with brain fog and visual problems. It is hardly possible to focus objects combined with vertigo. Does it sound like a fibro flare up? Did the extreme symptoms go away one day?

Bonnie J answered 3 years ago

After reading everyone\\\’s stories I\\\’m opting not to get vaccinated, I\\\’m 43,fairly healthy other than fibro,few bulging discs and arthritis. I can\\\’t imagine going through some of these side effects on top of fibro. I came very close to getting the vaccine 2 weeks ago but my gut told me not to last minute. I\\\’ve been in a major flare for a few weeks now and my dr and I are trying to figure out what works and doesn\\\’t. I pray for all of you and that you all heal quickly.

ARLEE answered 3 years ago

I have had Fibro for over 25 years, and for 18 years I have been able to manage it with SSRI’s. However after the 2nd Moderna shot in April 2021 I started to decline with inflammation in all my joints, brain fog, headaches, along with fatigue. My shoulders, neck and legs hurt all the time. When I get out of my desk chair I can barely walk for at least 50 feet.  The pain makes it hard to sleep so I never feel rested. When the weather changes I struggle to move around. Before the shot I was full of energy clear headed with very little pain, now I drag myself to work do the best I can and drag myself home to take a nap. Still on an SSRI with a dose increase and still not getting a handle on this flare up.

Penny answered 3 years ago

Be careful – I also have reactive arthritis and had terrible pain in my chest bones and sternum after my Phizer vaccine – first shot . Luckily ER did tests and discovered witn blood tests and scans  I had Acute Pericarditis – they treated me with a combo injection. Of cortisone , diazepam and something else – my BP also shot through the roof and they fixed that too . Luckily they made and diagnoses and early treatment my heart wasn’t affected and I am now recovered . I could have sworn it was an arthritic or fibromyalgia flare the pain was similar, all my chest bones were extremely painful   Apparantly is a knows side effects from Phizer . I have t had a second shot – not going through that again

Sez answered 3 years ago

Looking for similar symptoms like mine after first dose of Pfizer, on July. And wondering if anyone get the second dose?
Diagnosed with mild pericarditis and Costochondritis. Also have a swollen are next to my thumb (like a bump) and severe arm/wrist pain.

With severe chest left leg, left arm shoulder pain, left side neck stiff and painful to touch. Also developed tooth pain on second day after vax, Turned out my wisdom tooth is infected.

30 years old, female, got my first and only dose on 19 july and since then just pain and hospital visits. Today it has been 2 months and did not get second shot yet. (My doc wants me to get due to increased cases in my area)

In the day, after vax, I was just tired, didn’t have much arm pain or any symptoms other then sleeping a lot.

2 days later, my left leg started with severe pain, heavy breathing, palpitations were so bad that I wasn’t even able to breathe properly when walking in the supermarket. (I walk daily 5 km and not a fit person but active) my doc checked for blood clots (ultrasound and blood tests) was clean. Used voltaren (nsaid) a week to ease the symptoms.

After a week full of neck, shoulder, arm, leg and heavy chest pain (just right under left breast and sometimes up to my collarbone) I called up my doc cause pain wasn’t easing, we increased the voltaren dosage and he pre-diagnosed me with possible myocarditis/pericarditis and told me to come to hospital for proper check. (Due to covid first non emergency checks are done over the phone in here)
I went home after walking to pharmacy with severe fatigue and lay down to breathe a bit before leaving for hospital. I woke up with severe chest pain cough and fever later same night and realized I passed out after pharmacy. Rushed to ER and spend the night there and diagnosed with Pericarditis, referred to cardiologist and done heart ultrasound, more blood tests and weekly appointments to hospital for a month (blood is getting better, ultrasound came back good)

After hospital and taking almost 10-12 pills a day, my pain is much manageable and but my arm and wrist pain left behind. I can still feel my chest pain on and off during the day but wrist /arm pain is constantly there and my hand is week as well. I have developed a cyst looking like little swollen bump between my left index finger and thumb after hospital visit. (I have received IV, blood taken, CT, Xray, ecg) Done ultrasound of arm/hand but radiologist didn’t find any blood clots but they also don’t know what’s wrong.

I am due to have a wisdom tooth surgical removal, using antibiotics now and not sure about timing of the second dose or if I should ever get it. Did anyone get these type of side effects after first dose (pericarditis or Costochondritis) but still went with second dose, also how long was the wait between?

Thank you :)

Malin answered 3 years ago

Anyone with fibro, Who have mixed pfizer and moderna? Im due for moderna shot next Monday. First one was pfizer. I really wanted the same vaccine, but the only choice now is moderna.

Valerie Scheetz Bourbour answered 3 years ago

I am so glad that I read this. I have had a bad feeling about getting this vaccine. I’ve already had Covid in September 2020 and still have aftershocks after all this time. I work in education so I believe all the time spent in the classroom I now have herd immunity and don’t plan on getting the shot.

Tammy Edwards answered 3 years ago

I have a question. I never have fibromyalgia before until I had the Pfizer vax. Now I have it without any warning. Has anyone else had this happen?

Rita Tanti answered 3 years ago

I feel for everyone with all the posts l have read. I am so glad that l am not the only one suffering from my first Pfyzer jab, Sydney Australia. I thought l was alone and crazey feeling all this pain. I plan on calling my GP this week to make him aware. Besides my normal medications that have not been enough to cover my pain l have had to take endone and that still does not relieve pain, comes back after a few hours. I am 56 years old and left work due to the ups and downs and flare ups of fibromyalgia.  I am lucky l get to sleep when needed which is alot lately. I am dreading my second jab at end of month so l hope the pain is not worse but l do hear the second jab is not pleasant.  Take care and stay safe to you all, Rita.

Kay answered 3 years ago

I don’t know if sharing my experience will be helpful or not, but here it is. I’ve had Fibromyalgia since 1994 that came after a severe virus that lasted for 4 months. (I can no longer take any medications for my Fibro since I react to every single one of them.) I have learned to cope the best that I can. Fast forward to today and after I chose to receive my first Pfizer shot. The first shot brought a sore arm and severe fatigue, but only lasted about 3 days. Then, 7 days after the shot, I was hit with a fibro flare, severe IBS, nausea, light headed feeling most of the day, joint pain and frequent irregular heartbeat. By the time I was going for the second shot, I felt a little improvement so I proceeded to get it. I am now 11 days after the 2nd dose. 5 days from the second dose I have been in the worse fibro flare I have ever had along with many of my joints that have a lot of pain and some are swollen. I get random twitches and numbness, and much more. The weakness in my hands is worse than before. I thought that by getting the vaccine I could ease the nervousness that was mounting in my head that I would get Covid for sure if I didn’t get the vaccine. Remember, the Fibromyalgia that changed my life all started with a virus, so I was so scared. I don’t know how long this horrible reaction to the vaccine will last and I am not sure if I would ever take a booster shot given how horrible I feel now. I did the vaccine out of fear, so I can’t say what is right or wrong for anyone else to do. But I support everyone’s personal decision about the vaccine because of your health concerns. All the best to each of you. My prayers are with you all.

Carole answered 3 years ago

Hi everyone, my job has mandated the vaccine or get fired, great news. LOL I was diagnosed with fibromyalgia back in 2019 but I also have IC since 1997 and I am concerned about the vaccine and what it will do to me. My fibromyalgia has been what I can call steady, stiffness in the morning and aches and pains. But my IC is a different story all together, I have been in the middle of a horrific flare for about 6 months now. Reading all these comments scares me to even consider getting vaccinated and what it could do to me. Thank you all for your bravery to share your experiences with everyone.

Joanne Lyn answered 3 years ago

Hi everyone, 59 yr old female, retired 10 years, in Canada. Have had fibro since around 2000. Been doing really well lately controlling it and the IBS, chronic fatigue, and body aches that go with it. Along with severe arthritis and a bad back, 8 messed up discs also degenerative disc disease in neck, and spinal stenosis. Happy to find this site to realize I’m not alone in what I have been feeling after getting Covid vaccine. 1st Moderna May 7 left me extremely fatigued. You know the feeling-11 hours sleep at night (with help from sleeping pills) and 2 naps a day, 2hrs each time. Somewhat achy all day. 2nd vaccine end of June, Moderna also. (Both shots only had mild sore arm & mild flu like symptoms. Just the fatigue.) After the 2nd vaccine I still have not recovered my strength, I’m still just as exhausted, if not more. I’ve gained weight from being inactive. I use to walk several miles a day. My body aches all the time. I’m more reliant on my pain meds & sleeping pills. The fatigue is killing me though-hurting my back and having sciatica flare ups also. 4 years ago my last sciatic flare up lasted 18 weeks!!! Headaches, arthritis is worse. Hands ache like the dickens.
I having been taking my regular pain meds, Advil, muscle relaxants. I swear by magnesium MALATE!! My private naturopathic doctor suggested the Malate version, says it works best for fibromyalgia. I eat bananas regularly also. I also find that antihistamines and fish oil really help with brain fog and that weird head spacey feeling.
I know I have to start forcing myself to get more exercise and fresh air to help tire me out for real but easier said then done. I’m also waiting for a double knee replacement.
I’m hopeful that these symptoms will go away shortly. I figure it’s our bodies reaction after fighting so hard to build up the antibodies we need to fight Covid. It has exhausted us to the point of a big flare up, like any other major, traumatic event in our lives that cause flares (some of us having worse flares than others).
I’m happy to be vaxxed, would do it again but I wish there was more info on this to prepare us with what to expect. We could make better informed decisions about what we choose to do. I’m hopeful that with the cooler weather coming into Canada now, that will be beneficial to help my system regenerate.
Take care all!! Gentle hugs to everyone. Just keep plugging away the best you can. It’s nice to know we are not alone with what we are feeling/going through with our special after effects.

Dave answered 3 years ago

Erin, you are not alone.
Same here, its been a 5 months now

Erin Lovenjak answered 3 years ago

I had the first phizer shot had an infection that ran three my body and high blood pressure the second now my legs are having issues almost everyday some days hard to walk back pain neck pain tired legs that feel like freezing in them. I never had this before the shot.

Pam answered 3 years ago

Hi everyone. I have fibro but have been doing fairly well. I haven’t gotten vaccinated yet because I am afraid. I’m fearful of the way these vaccines work. My body is already on overdrive and attacking itself. I’m afraid that the vaccine could cause much more of that. Reading the original post and all the comments completely validated my concerns. Until now, I haven’t found any information available on the topic.

But I am wondering….how are you guys doing now? Have these symptoms calmed down? I think I might be able to deal with a couple of months of suffering, as long as there’s an end in sight. But if this could put my long-term quality of life at risk, I’m not doing it.

I’m a U.S. federal government employee. It’s been mandated that we all be vaccinated. I’m betting that I can get a reasonable accommodation to excuse me from the mandate. But I would like to get vaccinated so that I can travel and live life.

If you would, please share how you’re all feeling now. I hope you have good news to report – for your sake and mine. Thank you very much! Be well!

Holly answered 3 years ago

I’m on the 5th month of
Horrible flare since I had my second vaccine. Anyone out there feeling better yet? What did you do? I’m starting to feel like there’s nothing left to try. Any ideas please?

Abbbo answered 3 years ago

6 months post 2nd pfizer…
Intractable pain every where..stomch upset
And irritable bowel syndrome

Patrick answered 3 years ago

I have a thirty five year history with chronic fatigue syndrome and fibromyalgia. My general state of health has been much improved over the last two decades, with occasional the flare up not lasting more than a week or two, usually caused by exposure to toxins, or stress of some sort. Had my first covid vaccine jab 27th July (Pfizer), and initially was ok. However , can report two months of ongoing chills or sweats, fatigue, more aches and pains than usual, and memory lapses. Sleep disorder a problem at times. I relate this to having the vaccine, unfortunately, and have put off having a second jab more than once. I do not want to feel as ill as I once was, and may simply cancel the second jab and take my chances. I’m in New Zealand, which helps with isolation, and I guess one shot may be better than nothing. Have consulted my GP, and apart from pushing out to a three month gap he did suggest prednisone two weeks after having a shot (to allow the body to actually make some sense of the vaccine first). I appreciate these will be difficult decisions for any of us to make, but underneath you need to trust your instinct, and realize each persons life is their responsibility. I don’t wish to catch covid-19, and certainly don’t want to pass it to others, and that may mean I eventually take more vaccine on board. For the moment, I am delaying that until these familiar but unwanted symptoms die down, hopefully.

Jodie Armstrong answered 3 years ago

I’m just wanting to write to give people hope as I haven’t had much lately until these last few days and I know how scary it is not knowing. After having the 1st vacinne I experienced a flare up of my fibromyalgia and alsorts of symptoms. From headaches dizziness tinitus. Brain fog. Ibs symptoms. Aches literally everywhere to the point on some days can’t even walk without being in agony. My doctor told me it will go and go back to work. I couldn’t though as I was in too much pain. Paid over $500 in tests to show nothing which is hard when you’re not working amd earning. Anyway the last 3 days the symptoms have reduced greatly and for the 1st time since all this nightmare started um starting to feel hope that it’s finally easing. This is my 9th week since it flared up so I’m hoping that the other people here see improvements in thier symptoms. Its so sad to read what everyone has gone through and I dont think people without it understand this so its great to read people that do understand. Ive had so many rude comments by ignorant people suggesting im making all this up and they have no compassion including my mother in law my husband my boss and even my dr. I’ve even had days I think maybe I’m just imagining the pain. Its just absolutely crazy. All the best to everyone in your healing 🥰

Rita Tanti answered 3 years ago

Hello to you all, this is Rita from Sydney Australia once again getting in touch with you all regarding the Pfyzer Vaccination. I am going for my second shot this coming Tuesday. I am pretty worried as it has been almost 3 weeks since 1st shot and l feel l still am in a flare-up. I phoned both my GP and Specialist with regards to how l am feeling and that l am having reservations about second Vaccination. Of course they sympathised advising that l must have the second jab as it is important to my health and well being plus it will effect any freedom’s coming my way if l am without the second Vaccination. I was advised that this flareup is temporary and quiet a normal occurrence for someone in our situation and should only last a week, two at most. Well l am here to say it has been more than two weeks and while l am improving each day, l still get up with pain and go to sleep with pain. I am consistently tired and always feel somewhat distracted or not interested in doing or completing a task or any task for that matter. I have been watching SAS Australia and wish that l was able to be strong willed and somewhat resilient to any pain that comes my way. I am a widow whose husband had MND,you guys know it as ALS or Lou Garrets Disease,either way all painful and inhumane. I think of how my husband would have been in such constant pain, despair and exposure to a life that he had no control over. Here l am, fast forward 21 years later, 56 years old and having raised two beautifully well adjusted daughters, l can’t seem to cope with something simple as Fibromyalgia. Well to me its not so simple. I left my job that l loved as sitting doing administrative work, getting up early in the morning and getting home by 5.30pm 4 days a week was too much. It has changed me and l would just like one day where l can complete simple tasks or have one pain free day. So l can say l am scared for my second jab, scared that my pain is never going to go away and scared that l am sure that my medical providers are sick of hearing me whine about being in pain and them telling me l need to exercise more and learn to find a balance and rest throughout the day. I am sure we all know that we try to complete task’s, try to exercise or walk throughout the day and try to rest or sleep throughout the day to get rid of fatigue and pain for that day. Well we all know as sufferer’s that no matter what we try doing the following day we have made our symptoms worse or just get up feeling the same way. Well l just want to say l am over it and just would like no pain for a day or just to not whine or take any pain medication for a day. My question today to any of you is “Has anyone tried Cannebis Oil and has it improved you’re well-being”. I have heard it helps pain management and it helps with Fibromyalgia. I am willing to give this a go but l am worried and paranoid to suggest this to my GP and Rhemotoligist Specialist as l am not sure of their reaction. What l do think though it would have to be better then the Trammal, Lyrica, Endone, Panadeine Forte or occasionally Predisone that l am required to take, which l feel none of the above mentioned is working anymore. I would really appreciate you’re input or you’re own experience’s if you have tried medicinal Cannebis Oil and its effects on you’re Fibromyalgia and well being. Thankyou so much, Rita.

Sami answered 3 years ago

I’ve been in Fibro/ME remission for about 4 years. Briefly, upon catching EBV in 2014 I became really sick (fatigue, sudden IBS, brain fog, then accompanied by overall muscle pain caused by fibromyalgia) it lasted about 4 years on the scale about 8 for the first two years and 6 for the following years. Moving countries and getting out of the UK actually helped me a lot. I literally started to feel like my old self almost immediately. For years after move I went back to my normal life style, sports, even parties. I could drink alcohol again and well misbehaving, even managed to go through a major life stress and didn’t relapse. Life was just incredible and normal compared to days back with fibre/ME. I know this is not important but I just want to highlight how well I felt during these years. Not thinking much of it I took both doses of Pfizer. Second one got me a bit out of whack but it was ok overall. For me things took turn a few weeks later. The Incredible back and neck pain returned. The overall fatigue. Then abdomen pain and symptoms of IBS. It has been over a month and I don’t feel any better. I’m worried I will stay in this state again for years as I did before back in 2014. Really trying to take ti easy and look after myself. It annoys me that some so called experts still claim that the cover vaccines don’t affect ME/fibro patients. I’m a great example that they do. There was literally nothing else that could trigger my relapse, no flus, no other stressors. So what is happening and why are we being lied to???

William Charlton answered 3 years ago

I am a scientist who has struggled with a hyperactive immune system for over 10 years. Knowing what i know now, i carried this gene in my body for my whole life and there were signs i didnt understand when i was younger.
My immune system like everyone elses is split into two, the commander cells and the soldier cells. In most the commander cells can instruct its soldiers when to fight and when to halt. For fibromyalgia suffers like myself (not all fibromyalgia patients fit in this category) COVID 19 has to penetrate the immune system bybtricking it to believe its a friend. If your immune system can not be tricked this virus cant gain dominance.
For myself everytime ive gotten a flu shot vaccine ive ended up sick for 1 to 2 weeks. Now i understand why. Fibromyalgia like ours attacks all foreign bodies friend or foe. With that it inflames the system as it fights to defeat the viewed foe. In this case the vaccine as most vaccines uses a portion of the virus in the defense make up. However our bodies fight this and struggle to reject it. If our immune system is very strong then we will get very sick as a result, until our bodies defense is defeated we will get sicker and sicker. For some that is a quicker turnaround, for others it is not. My Mother in Law was sick for nearly 4 months from the vaccine.
Dont get me wrong i am a supporter of the vaccine, and firmly believe that 98% of the population should want it. For me though i can not go 4 months without working in my company, thus i will forgo the vaccine. With my immune systen i will be sick for months. I know of two cases where fibromyalgia patients died from the vaccine, but i also know most recover, the time being without income (i own my own business) has forced me to take a more non vacine approach for myself.
I hope and pray that all those who are afflicted with the virus can recover quickly and all those struggling with the after math of the vaccine also are able to recover.

Christina answered 3 years ago

I had the first Moderna shot in January. I was fine until the next day…horrible nausea (like the worst I’ve ever had in my life), tingling arms and legs and an awful headache. A few days later that subsided, but my doctor said to hold off on the second dose. Five months later, I contract COVID. While I don’t have a fever or extreme body aches or any cough, I did struggle with chest pain and shortness of breath. Over the course of the next month, I regained taste and smell, but continued with chest pains and shortness of breath. I have had a few scary spells with heart palpitations as well. I also started with leg pains and lost 20 pounds in less than a month. Over the last three months, the pains have continued all throughout my legs (I have muscle tremors or spasms and sometimes tingling too) and I sometimes feel them in my arms as well, but that didn’t happen until after a month or so with the legs. Now I am feeling similar pains in my lower abdomen too. I have had an EKG, a heart echo and work a two week heart monitor. All seemingly ok. I’ve also had my lungs Xrayed and they are clear as well. I have drastically changed my eating habits and am trying to walk at least a mile several times a week. I haven’t had an official diagnosis of fibromyalgia, but I’m wondering if that could possibly be what’s going on and if it started from having COVID or from the vaccine. Praying for wellness and healing for everyone here.
Any thoughts?

Melissa Johnson answered 3 years ago

I purposefully was NOT going to get this vaccine for this exact reason. It has caused a horrible fibro flare to the point even my clothes touching me yesterday hurt horribly and made my skin burn. Along with that I couldn’t t even lift my right arm. It’s not much better today, but is a little more tolerable. I ended up getting the vaccine because I didn’t think it was fair for me not to get it, at the same time I’m telling my firefighter sons not to jeopardize their careers over a shot.

Denise answered 3 years ago

Hello, it has been one month since I was given a choice to stay employed or quit. Unfortunately, I could not choose to leave at this time. Took the J&J vaccine as suggested by my physicians should I not pass the exemption process which I didn’t because the physician making the decision stated fibro, CF and thyroid issues do not meet their criteria for the exemption. I went on a medical leave the day after the shot, been to the ER and a new primary care doc as I felt like I was having a stroke or a heart attack. They of course said everything was fine despite the fact that I was having shortness of breath, no energy etc. I have, at the most, 4-6 hours of energy a day. Sleep does not help nor any over the counter pain relievers. Fortunately I had been to a Homeopathic physician in the past for my fibromyalgia because no endo could relieve my symptoms without a ton a pharmaceuticals. Turns out my body did not like those either. I returned to my homeopathic doc last Friday and am so grateful to be feeling better…not totally…still weak but I’ve regained some strength and my thought processes are much improved. I am anti vaccine for me and me alone. Prior to the vaccine I practiced necessary measures to not only prevent the spread to others but to myself. I too have heard many people died after the vaccine even with no underlining conditions. Unfortunately we will never know the number of those that died from the vaccine as they seem insignificant to those reporting the numbers. I wish everyone a speedy recovery from this demon…unfortunately recovery does not seem to be quick…

deb answered 3 years ago

Well everyone I will pray GOD heals you. I hope all of you go back to your normal before the vaccine. I will probably loose my job in December but I don’t care. I will never get the vaccine. Your posts have helped me make up my mind. GOD has also been a big part of my decision. I am very careful and don’t go many places during the day. I would never get a booster if I had the vaccine.

J-nine answered 3 years ago

I had to have the COVID 19 shot for my job. I received the second shot on 10/4/21 at night, in the beginning my arm started to hurt then my body was attacked with pain all over!! I literally feel like a Mack Truck ran me over!!! All over pain from my head to my feet !! I have been taking my Lyrica and also in between taking Advil and nothing working! I think I’m definitely in a Fibro flare. I just need it to stop ! My job requires me to be sharp on my toes and very active ! Right now I just want to curl up in a ball and make it all go away !!!

CK answered 3 years ago

Hi all, I’m a 46 year old male with no previous history of FM. I got my first shot of Pfizer on 4/1/21. I had the same symptoms most people experience 2-3 days after – sore arm, fatigue etc. Nothing atypical. But 7 days after I got an intense eye twitch. This lasted around 2 weeks, and diminished over that time before going away. I had the second Pfizer shot on 4/21/21. No serious side effects immediately after. But 10 days after I experienced this: panic attack/extreme anxiety, followed the next day by searing muscle pain at injection site, then shoulder, hip, back, leg – all on left side. Next came joint pain in both hips and knees. Felt like joints swelled, like I imagine arthritis to be. This gradually went away over a period of 7 days, was fine for a few days, then the cycle repeated, but with less intensity. And it’s been continual since then. This thread is the first I’ve heard of FM. My symptoms match what many of you have described. I’ve found two triggers for flare-ups: food and pollen. To counter food reactions, I’m eating a Whole 30 diet. This helps. I also figured out that nightshade foods trigger it, so cut them out, too. For pollen, it’s ragweed season in NYC, which has been hell. Zyrtec seems to help, but I’m looking forward to less pollen in the air. My doctor prescribed Duloxetine, which I’m about to start on. I’ll update here if it does anything. Thank you all for sharing. It’s been so helpful reading. I hope what I’ve share is useful to someone. As a side note, even knowing all of this before getting the vaccine, I’d still get it. Weighing up the risks, the vaccine the lesser one. Also, I couldn’t live with myself if I got my wife sick (or worse). Same goes for our families and friends etc.

Rita Tanti answered 3 years ago

It has been one week since l have had my 2nd Pfizer vaccination. I have been in pain not only with my fibromyalgia but l also have a condition called Lichen Plannus, it is an autoimmune disorder. I have been feeling not only unwell but insecure and anxious like there is no end in sight of getting to some normality. My GP has assured me a few more weeks l should start feeling better. I am tired of popping tablets after tablet’s but want to consider medical cannibis but not sure how to approach it with my Rhemotoligist. I just need to keep going and ask as it may hopefully change the way l feel. All the best to b everyone and lets not give up.

Jillian P answered 3 years ago

Hello again. It’s been two months since I posted here and four months since my second Pfizer vaccination. As a reminder: I’m a 20 year old girl with no prior health conditions. I’m sorry to report that nothing has improved with my condition and doctors are still stumped about what’s going on. It’s been really frustrating. I feel like I’m totally on my own in this. I keep getting dismissed because I’m young and SHOULD be healthy, but I’m not okay, this has completely taken over my daily life and there’s nothing I’ve been able to do about it. I’ve been with unbearable pain and double vision for four months, lost over twenty pounds, and yet no doctor seems concerned. “You’re just sore from exercising” (I haven’t been exercising) “You’re just anxious, talk to your therapist”. I truly feel helpless. One of my doctors has settled on a Fibromyalgia and POTS diagnosis but my rheumatologist disagrees (yet has no alternative ideas). This has been a nightmare and I desperately want it to end! I was given prednisone for six days which got the swelling down in my back, but my double vision did not improve, and now that the six days is up, all the pain is returning. This week is gonna be rough, so pray for me. I’ll update this again sometime. Stay safe everyone.

Claire answered 3 years ago

I was diagnosed with fibromyalgia in 2005 after suffering a traumatic brain injury. After intense deep acupuncture in 2013, I was finally in remission. I received the J & J vaccine in June this year and within weeks I started developing joint pain, headaches and chronic fatigue. I wasn’t sure at first what it was but after speaking with my physical medicine doctor, he felt it was due to the immune response brought on by the vaccine. So back to acupuncture I have gone. Within the first three sessions of deep acupuncture (which can be painful in itself) and acupressure, my overall pain is down as well as the fatigue but my joint pain remains high. I take magnesium and B2 for migraines as well as herbal meds for inflammation and immune support. I never expected to take the vaccine but I now care for my elderly parents in my home and did so for them. I don’t regret taking the vaccine but will think carefully before having anymore. I hope everyone stays safe and takes good care of themselves.

d answered 3 years ago

Don’t feel sorry for me because I won’t get the vaccine. I have rights just like you all did to get the vaccine. I feel sorry for all those that have been forced to get it to live and work. I live just like I did before this started and will continue to live as I eant.

Nancy Harkness answered 3 years ago

I felt basically fine and just rested around the pfitZer shots. I worry for those people who decide not to vax after reading these posts. Covid is deadly. fibromyalgia symptoms get worse and slightly better, by nature of the illness.

Kay answered 3 years ago

This is an update. I am now 6 weeks post 2nd vaccine. The good part is the numbness and twitching are lessening. The nausea is a tiny bit less. The not so good part is that the awful fibro flare is the same, the lightheaded/balance issues are the same. The really bad part is the joint swelling and pain is worse. I never had joint swelling with fibro before. My legs hurt so bad from what I think is nerve pain and that it is difficult to walk. I have gained weight, which of course, doesn’t help. The weight gain comes from the inactivity for sure. Since I cannot take anything to help cope with the fibromyalgia any longer, I just try to cope on my own. I feel like I am doomed to have these side effects forever. 4 months until my booster shot – I don’t think so.

Sarah answered 3 years ago

Moderna 1st shot 3/20/21, 2nd 4/21/21. Gradual increase in fatigue and all over body pain (hips, lower back, knees, wrists and ankles worst). By late September could barely move. I’m 51 and in otherwise excellent health. I put on about ten pounds since getting the shot (lack of exercise because of pain.)

Had a flu vaccine about 15 years ago and had same issue. Fatigue and pain lasted about a year. Gradually got better. Stopped getting the flue vaccine until a few years ago when I owned and operated my own business and could not take sick leave. No pain issues after taking those shots.

So here’s the weird thing. I got breakthrough covid last week. Moderate cold symptoms, recovered in about 3 days, no big deal.

Pain is gone. Fatigue is gone. Overnight. It’s been over 8 days since I got sick and no returning fatigue.

Related? Coincidence? I don’t know and I make no claims scientifically. But I’m better now.

I’m still pro vaccine. I probably won’t get the booster because getting the virus seems to have resolved both the pain and likely has me naturally immune for a period of time.

LORI answered 3 years ago

Six months from second shot and I finally am coming out of the flare. First flair I’ve had in over 15 years. Not sorry I got the shot, but will be extra careful if I need to get the booster.

Brittany answered 3 years ago

I guess on one hand I am relieved to know I am not alone, however on the other I am so sorry others are having the same problems I am. I am 34 years old and have had Fibro for 15 years. Before my first vaccine I had just nicely gotten myself to a place where my health was manageable, still daily symptoms but I was able to feel happy and hopeful about life. I was walking 10,000 – 17,000 steps a day from Sept. – April. This was a huge accomplishment for me. Received my first vaccine on May 2nd, and I feel my life has changed in every way possible. I was in and out of emerg 6-7 times in 3 weeks only to have the drs tell me that I had a virus. After the second vaccine, Moderna both times.. I couldn\’t walk on my own, went to emerg again and the pain was unbearable. Now 6 months post vaccines I am struggling beyond. My hands and feet are cramped everyday, sore head to toe, headaches non stop, facial migraines, and I can feel this radiating through my system. It\’s almost as though things are pulsing inside me I can feel it in my legs. No one seems to want to believe how much Im hurting, and I feel so alone with what has happened. I am so sad this has happened..I am scared for how long it will take to recover from this. If we need a booster or a 3rd vaccine, I do not want to get it. I am worried I will have to make a decision to do it if I want to watch my son play hockey in our local arena, or build memories with my family doing things out and about. I feel I could be robbed of those opportunities just because I don\’t want to put my health in harms way even more. Sending everyone Love.

SUSAN answered 3 years ago

Omg, thank you for sharing your stories. It is 1 am again I am awake, in pain, I have MS, Fibro, RA, IT band syndrome, Brucitis in my hip & IBS. I also don’t sleep because of worrying about either getting COVID or the vaccine. I cannot take the chance of feeling worse, my husband is terminally ill, I am his sole caretaker. I am following the FLCCC prevention protocol but am still scared to death of both the vaccine and COVID.

Janet answered 3 years ago

I am 67 years old. Have been managing Fibro for 30 plus years. After first Pfizer shot I felt better in one day, Second shot maybe 2 days. I had booster 3 days ago. I have severe arm pain and lymph node pain and general malaise. I feel slightly better each day. It is like getting over a bad flu. My first night the pain was awful I could barely walk. I can’t get the reminder out of my head of how badly I felt. I will not have another booster. I never even considered the damage these shots can do. I wish I read more prior to getting vaccinated. I wasn’t PRO vaccine! Now I firmly believe it not for everyone! Fell well everyone.

Mona answered 3 years ago

i have had fibro for about 9 years. i just got my first shot of pfizer . immediate nausea…and no all sxs that i previously experienced…rapid heartbeat, chest pain, muscle spams, back and neck pain, dizziness, i s, jaw pain, heavy legs, knee pain, foot cramps, itchy skin, insomnia….all a few hours after the shot. i can barely left my arm. over time i will see if the rapid weight loss returns as well.

i will try some of the info listed above by using my protein and vitamin d and trying to find medicine for the headaches that won’t raise the blood pressure.

i tried. i was threatened with termination unless i got an exception from my doctor or religious institution. I have kids and need to work. i made the decision that was right for me…but right now i’ve feeling no way will i get a second shot. when this wave breaks i’ve got it get my own business up and running. no o e knows what i feel inside but me…no one has to walk this out but me. i don’t seek understanding from those in power but some compassion would be appreciated because how can you understand what you have never endured.

we are all in this thing together. let’s left up one another and encourage one another until our change comes. for i believe i have to belief that it will come eventually.

Lisa answered 3 years ago

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. Here’s the video. Exciting news.

Bill answered 3 years ago

So, I have never had fibromyalgia… rather, I have never been diagnosed with it. Oddly enough after my second COVID vaccine, I began experiencing several issues with pain, chest heaviness, shortness of breath and others. That was in the beginning of May. I finally had my first appointment after several difficult months with a rheumatologist today who told me that I was the fourth person she’d seen this year that had a similar lifelong patient history and now experiencing what I am after the vaccine. I start some meds tomorrow to help me manage some symptoms, but I am still really scared and worried. Believe me when I say that I am still a big supporter of the vaccine… I just wish I had some warning about this whole thing up front.

Diane answered 3 years ago

Had Moderna shot 2 six hours later the pain from hell….bad enough to mutter to myself gets any worst your going to ER. I felt better in the AM the next day. But notice the Fibro was acting up. The next two months extreme exhaustion was more than I ever had with the Fibro. Six months now still have exhaustion issues. I never went to the doctors fed up with their shove a pill that does not cure my issues down my throat all these years. I blame bad medicine for some of the issues I have today. In fact, have had a terrible side effect after taking those Fibro wonder pills. I have family who works in the field of hospital infection control and two family members who worked in the field of pandemic respiratory care of SARS and MERS…and now. Sister said you do not want to die from this one…and that made me understand one thing. It was a horror show for the care workers….even got a best friend in the field in Boston. Figure get the vaccine if it works a little it is worth it. I knew the risk on both sides of the fence. This is one of those damn if you do and damn if you don’t things. What makes me mad is the unbelievable bias One way and the only way project. Meanwhile to get real help medical-wise…..until the big Pharma companies have to post all the risks and doctors sit down and tell you so you can make wise decisions. Those fibro drugs also have major risks and major lawsuits going on the damage they cause….., and no one is talking about that one. The vaccine you will not take …but shove tons of fibro pills down your throat that cause organ damage and more…. I do not get it. Like I said covid kills, and I for one do not want more organ damage than I have already….vaccine or no vaccine we are screwed either way.

Rob answered 3 years ago

Li will NOT get the jab. ALL of my doctors have told me either flat-out not to get it, or that they recommend I wait for more data. 3 of them confided in me that they would never get it. My 82 63-r old father, who was in excellent health prior to his 3 Pfizer jans, is now experiencing a decline in health. It is an OUTRAGE!!

Kris answered 3 years ago

so i dont think i have fibromyalgia but i got my 1st and 2nd pfizer vax in April 2021i am wishing i hadnt. i initially got the massive headache after, but ever since then i have had increasingly constant pain. it started in my hands then slowly spread throughout rest of body. dr did blood work and said i had a high ra factor that was it. all else was ok. im taking celebrex and 5mg prednisone daily til im able to see rheumatologist. i also have a history of psoriasis as well. i serious think that the vax does more harm than good.

Bethany Hanczor answered 3 years ago

Diagnosed Fibro 10 years ago. Tried meds but ended up managing the pain by my lifestyle. Only have flare ups if I overextend myself physically or lack sleep. Got my 1st dose 4 days ago. Immediately light headed. Within 5 hours I cringed if I was touched. By the next day I was in extreme pain, specifically located in my spine. Has been ongoing since, with no relief from OTC meds. I use a heating pad which helps minimally. I’ve been in bed since. Any suggested help will be appreciated. Supplements? Etc? I can’t function and am scared that I made a decision that will cause long term ramifications.

Laird answered 3 years ago

My daughter is 14 and was diagnosed with juvenile fibro at age 11, sadly. She got her second shot on 6/7 and 2 weeks later got her period. She is on birth control for possible endometriosis and takes it continually to not have period. Well, she got her period in June, while on birth control and had it for 3 months. The doctor said to stop for 3 days then start again and let her body reset. That worked. I wondered why this summer she seemed to be in more pain, she is on amitriptyline and that had helped. She is now in so much pain she said she can’t go on. Missing days of school. I am glad I get her vaccinated but not sure how long this will last. She is seen at a pain clinic and will go back this week I am heartbroken that I did the wrong thing. She is in excruciating pain in her legs, hands and arms.

Sara answered 3 years ago

I am writing this on behalf of my sister. She has had fibromyalgia for years. She was managing it quite well, mostly off all pain medication, walking 3-4 miles daily, going to the gym to work out, and managing a small farm, until last March. She died last Friday, cause of death listed as cardiac arrest. She was 68. In March 2021 she took the first Pfizer Covid-19 vaccine shot. Four days later she began having symptoms which she attributed to a relapse of fibromyalgia. She soldiered through, and took the second shot. Then the real problems began. She was very tired, developed nausea, rapid heartbeat (91 pulse), jaundiced skin, and split fingernails. She could no longer do farm chores and spent most of her time on the couch. She began visiting doctors and found out she was severely anemic. Over the summer, she was given four iron transfusions, followed by four units of blood, and then a potassium transfusion. She was tested multiple times for many things. Nothing helped. After an initial test in July was inconclusive, she was tested again in October and told she had Stage 4 B-cell non-Hodgkins lymphoma. At this point she was relieved to have a diagnosis and a path forward. Also at this point she was so weak she could barely walk and needed help showering. Her leg muscles had atrophied from lack of use. She was given her first dose of chemotherapy several weeks ago and tolerated it pretty well. I talked to her on a Thursday afternoon, a day after the chemo, and she sounded in good spirits. Four days later she had a heart attack and went into a coma from which she did not awake. She had asked me, when we last talked, to let the world know what she went through. This is the only forum I have found that is discussing this. Thank you for reading.

PhotographerSue answered 2 years ago

I had my booster shot on Dec 31 and I still feel awful.  I had a few neurological sensations after number 2, not bothersome but just aware that something was different.  Now I feel like my body is electric if that makes any sense – a bit of mild tingling in both arms and legs, muscle weakness, fatigue, and depression since my Fibro was well under control.  Now I feel like I’ve gone back 10 years.   What a mess.   Sorry to hear of all of you suffering too.