Suffering from severe fibromyalgia for over 25 years, the only pain relief I’ve found comes from a combination of high dose (600 mg once daily) ibuprofen and either 100 mcg fentanyl patch (after titration upwards from 50 mcg) or 4 mg hydromorphone 3x daily. These drugs take the edge off my pain (as a wounded soldier in combat). But they don’t alleviate the pain completely. I realize that there is a strong stigma associated with opioids, but they should be made available to patients suffering from intractable pain. I feel angry and frustrated about the “opioid epidemic” preventing patients like myself from getting the relief necessary to function with a semblance of dignity. The pain is akin to being on fire but the relief of death never comes. How can painkillers be denied to a person suffering to such an extreme? It’s inhumane.
I find that Arnica cream helps me. I also soak in a bath with espsom salts that have arnica mixed with them. The relief is temporary regardless if cream rubbed in or soak in tub but any relief is welcome.
I use cymbalta, voltaren gel, Norco and tizanidine. My case is severe coupled with restless leg syndrome. My pain has gone from intermittent to almost constant. And the anxiety and restlessness is horrible. It is said exercise helps, but not always. Sometimes exercise brings on flares. It has affected every aspect of my life! Diet can make a difference, but is difficult to adhere to because everything is NOT good for you in the way of GMOs, pesticides, preservatives, intolerances. My advice is to start low on strength of pain meds. Eat what you can tolerate, but do organic. Pace yourself now! Even though you can do a lot now, overdoing that will cause you to not do anything later. Take vitamins D3, B complex and 12, magnesium and probiotics. Start early to minimize damage long term. Simplify you home and your life. You will need it to be that way later. Do things you enjoy as often as possible, because one day you may not be able to anymore. Create you own plan of care and ask for help. Good Luck!
There are a few things that have worked for me to some degree. Nothing takes it away completely. Here are some things that have helped me. 1. I use a CBD balm and rub it in, I use Acetaminophen from time to time as needed. Any where from 3 to 4 tabs about 2 – 3 times a day. But I am careful and my dr. has my blood check 2 times a year to see how my liver is doing. So far so good. Also if I can get into the sun and warm my joints, I’m better also. Nothing totally takes the pain away, but these things I mentioned, at least makes it barrable.
I use Nortriptyline 3 pills per night. They do kick in and you do feel really drowsy which is a wonderful feeling as you drift off to sleep ( never slept so well) but if you don’t get your 8 hours sleep you will be sluggish in the morning. If I’m stressed I can take up to 7 per night. Night before sons wedding I took 7. They last for 24 hours. If I’m out late I’ll take one pill before I go out or I’m like Cinderella – the pain begins to creep back in, starting in my shoulder blades first – just reminds me how painful it is and how good the pills work. I hinastly don’t think I could function without the pills. Sleeping well heals you and pain free allows me to remain fit ( farmers wife ) Try any thing if it works – great if not try something else. 🤞🏼
I have been on Lyrica for years and it has reduced the daily pain for me. I have increased my dosage over time and now take 150 mg 2x day. BUT, what really works to pretty much eliminate my pain, is Meloxicam. On really bad days, days that I’ve pushed myself more than I should have, I take a 7.5mg tablet twice a day. The reason I don’t take it on a daily basis is that it causes me to want to eat ALL of the time and I fear weight gain. Ask your Dr. for their opinion on these medications.
My doc had me taking plaquinel. Works great..no pain..helps with sleep etc. Makes your hair fall out and some bad sides. It is a malaria med. Other than that i haven’t found anything that works that well. :( sorry
Hi Melissa, I have had fm for 17 years and I have found several ways to help pain. I am probably 95% better than years ago. I have found CBD oil to be extremely helpful. Exercise everyday. You will find what works for you. To much makes me hurt but not moving is worse. I do yoga, water aerobics, Zumba, and walk. Heat helps. I go to an a spa that has infrared light bed, a water massage bed, and a sauna. I do not tolerate regular massages but the water massage works out all the tight muscle spots on my scapula. Diet helps. Lots of carbs trigger my pain, caffeine triggers my pain , alcohol also so I try to watch all of these. Take a sleeping pill. If I do not sleep I hurt. Feel so much better when I finally agreed to take one. All this together works for me with not narcotics, just an occasional Advil. Good luck. It is trial and error what will work for you but you have to move! Even when you do not want to.
A neck heating pad calms the nerves and relieves the tension between the shoulder blades. Actually, I’m sitting with three heating ads ugh this now.
Lyrica, Cymbalta, and various offlabel uses. I’ve taken Gabapentin and Cymbalta, but they didn’t help me much. I took a combination of amitryptilene to stay asleep and 0.25 mg xanax to go to sleep for a long time, but now I can’t get any help on medicine to go to sleep–a good night’s sleep helps. I take 6.5 mg of low dose naltrexone now and that, plus dietary changes and yoga, is about the only way to manage my pain.
Low Dose Naltrexone (I 4 mg twice daily). It doesn’t get rid of the pain, but it makes it tolerable and less severe. I also use Cognitive Behaviour Therapy techniques, such as listening to calming and relaxing music; sometimes a warm bath in lavender oil or lavender soap helps; I bought some magnesium lotion to help with the muscle spasms.
The trick is to calm your body to reduce the tension, which in turn will relax muscles and keep the pain from being too severe. When none of that works, I call my doctor and go in for Trigger Point Injections. The TPIs help tremendously and give me relief for a few days.
So for me I tend to wait too long for the pain to get real bad; I donât like that groggy medicated feeling. I do try heat pad, pain spray or roll on, I take Tylenol and when itâs real bad I take my prescription pain meds.
Gabapentin but it has major side effects. Amitriptyline but it causes massive mental health issues like mood swings and depression. I use gabapentin and cannabis.
It really all depends on the person.Â I was diagnosed 30 yrs ago and have tried everything offered to me: flexerol, pamelor, cyclobenzaprine, gabapentin, lyrica, cymbalta, savella- to name a few.Â Most have made me nauseous and/or lethargic, and/or they wear off.Â Currently I have cyclobenzaprine to relax me so I can sleep, tramadol that I take very sparingly for day time pain, and tomorrow I may start back up on Savella.Â Don’t give up. Believe In yourself. I avoid white flour and sugar so pay attention to what you eat. Some foods may make your pain worsen. Try to keep moving. My goal is a minimum of 10,000 steps a day.Â Even when I don’t want to move, I take my dog for a walk. Listen to your body. Until a cure is found, no one but you can determine what is best for you.Â I wish you well as best as can be.Â Always know you are not alone.
Honestly, heat and rest. Warm water exercises help. Also, Tiger Balm ointment. It works better than any other OTC cream I’ve tried.
I’ve tried Lyrica, Cynbalta, Tegretol, Neurontin, pain meds.
I take baclofen. It’s not addicting and can be taken as much or as little as needed per day.
Methadone Has helped me tremendously! After having to come off a lot of meds due to liver damage
I take 4.5mg of Low Dose Naltrexone. My pcp wouldn’t prescribe it for me, but I finally found a pain specialist who recommended it. It’s not manufactured for fibro, so it has to be filled at a compound pharmacy. I’ve been on it 3 years now and it’s taken away the all over pain that feels like I’m getting the flu. I take it in the morning because it was causing insomnia when I took it at night. I also take baclofin a muscle relaxer throughout the day.Â
I found a good massage therapist who specializes in health issues. I had a doctor recommend this when I was first diagnosed. I have been seeing her for 10 years (once or twice a month) and it has made a huge difference in pain. It took me along time to find a good massage therapist and I can also turn in my expenses for flexible spending account to be reimbursed.
Medical cannabis helps me tremendously. I keep up with my exercise, a good balanced diet ant gabapentin. I had my doctor reduce my gabapentin dose and got my card for the dispensary.
My miracle drug is Naltrexone 4.5 mg at bedtime. It is prescribed by my pain specialist but I had to beg and plead for almost a year before they would write the RX. Because it is such a low dose, it has to be compounded. It’s NOT covered by my insurance, costs $80 – $100 for 90 days supply. I’ve been taking it for 11 months now and it really helps me. It keeps me sane and in the present and it greatly reduces brain fog. I still have chronic pain due to spinal issues and rheumatoid arthritis. I take oxycodone 10 mg up to 4 times a day for pain due to spinal issues. And I take Rinvoq for the RA. And I take 100 mg trazodone and 1,000 mg Tylenol PM to help me sleep.
The supplement MSM ( a sulfer based product) works wonders for me and allows me to sleep without waking up with pain. I’ve triad all the meds and nothing works better.
I’ve been on Topirimate for 2 1/2 years now. Normally it is used to treat migraines, but the VA started using it several yeas ago for treatment of Fibro. Results have been pretty good, I have had a few major flare ups in that time, but usually because I have overdone ( like with our move this past month)
Just a heads up…and it also depends on your age… but it’s very rare to get SSD for fibromyalgia. It’s considered a manageable condition. I received it at age 50, but I also have severe osteoarthritis in my back, had a final revision knee replacement at age 44 and am an 80% disabled veteran.( this makes a huge difference to them) it is a very long road to get ssd, and can take a number of years. Also expect to need an attorney.
finally diagnosed in 2014, although I’ve had the pain, migraines, brain fog and dizziness since I believe I was a teen. I’ve brought issues up all my life pretty much but one of my doctor says sometimes it’s all in your head. Ive had kidney stones and carols taken care of and several MRIs to include for my brain which came back normal. I’ve been given amitriptyline, gabapentin, oxycodone to mention a few. Ive been taking lidocaine patches which help a lot but now my insurance has changed and from paying $20 for a supply for 3months it’s now $100..what helps is to walk it all off and have a regular routine of 10,000 steps walking daily and Sun. Maintain a good immune and herb tea of soursop, avocado and moringa works wonders.
I would like to know how to go about my ssdi? Im hearing that its a tough challage at the SS office . If I may get some insides as to what to expect, will help a-lot.. have a wonderful holiday, stay safe of covid 19 and try to find some wonderful friends to share the day with . it helps
i would like a reply , if it’s not too much to ask…thank you
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