Fibromyalgia -- Need help on how to handle severe pain

Posted by ripley @ripley, Jun 14, 2023

I was told by a Rheumatologist last year that I have Fibromyalgia. She referred me to my GP for treatment, but he doesn't know anything about this disease. I need advice on how to handle the pain which is sometimes so severe and lasts all day. It usually eases some by bedtime, but lately I've been waking up about 3:00 AM with bad legs pains that keep me from falling back asleep. Since this started 18 months ago, the pain has gone into remission for a few months and flares up again for a couple months. The insomnia and other issues remain. My latest flare started about 5 weeks ago. The only meds I'm taking are Tylenol, which doesn't help, and sometimes Cyclobenzaprine at night. I am afraid of Cymbalta after hearing horror stories about terrible withdrawal issues when wanting to discontinue it due to it's side effects or when it stops working. It seems like all the drugs used for this disease have withdrawal problems. Any help would be appreciated.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

On Oct 16 I wrote about the centrality of Exercise and healthy food, the two factors that influence more issues than probably anything else.
I also had known one fibro-pioneer for many years and she said fulltime meaningful work is also critical besides other two I mention.

Good luck

REPLY

I’ve had Fibro and PMR for 15 years. I think I’ve tried all the Fibro drugs and wasn’t able to tolerate any of them. Gabapantin Dulled many of my problems including tolerance to store bought and restaurant foods, getting a good nights rest, BUT that wasn’t worth the side effects. For several years I have taken prednisone and have no side effects. Prednisone quiets the majority of my pain and the rest of my Fibro quirks I’ve adjusted to. I take 5mg a day.

REPLY
@magluchi

I’ve had Fibro and PMR for 15 years. I think I’ve tried all the Fibro drugs and wasn’t able to tolerate any of them. Gabapantin Dulled many of my problems including tolerance to store bought and restaurant foods, getting a good nights rest, BUT that wasn’t worth the side effects. For several years I have taken prednisone and have no side effects. Prednisone quiets the majority of my pain and the rest of my Fibro quirks I’ve adjusted to. I take 5mg a day.

Jump to this post

Did you ever try Tramadol, which I read some people use daily? Both that and Prednisone have long term side effects which concern me, especially since I already have osteoporosis. I see my Dr next week and need something to help with severe pain daily. Usually my flares last two months with two months of other minor symptoms. I am afraid to try the drugs approved for Fibro due to side effects and withdrawal issues. But I guess Tramadol and Pred. also have withdrawal issues. I guess there is no easy solution.

REPLY

Yes, I have tried tramadol, and I am allergic to it.

REPLY
@delia74

I'll repost what I wrote in a prior response: Three weeks to 3 months is a guideline for this medication, with time off it for a few months, then resuming as needed. I've been on it for many years (since 1990's), 10 mgs nightly seven days per week. I have regular checkups with rheumatologist and primary care physician, as well as periodic cardiology visits and full blood work.
No issues. It is a muscle relaxant, so the one concern is not taking more than what is prescribed and okayed because (as one doctor said) the heart is a muscle and you don't want to create issues with that organ in particular. You can't just self medicate with this muscle relaxant. I can't take amitriptilyne. Was on it and had to be "weaned" and released from it. Can't take other usually prescribed meds such as Lyrica, Cymbalta, etc. So cyclo it is for me. I didn't request it of the doctor that diagnosed the fibromyalgia, she prescribed it. I've had three rheumatologists since then (two retired) and each approved of the medication and dosage. One was in private practice, had been an internist as well as a degree in pharmacology, and absolutely knew his stuff. Incorporated specific supplements to ameliorate issues like inflammation, Raynaud's and neuropathy, and emphasized the important role that nutrition has. I was so sorry when he retired, but he went on to teach at a medical college in NYC, using his wealth of knowledge and experience to impart onto future rheumatologists. Two of my former rheumatologists okayed taking more than one does if in extremely painful flares, but I found that I became a drugged zombie with inability to focus and stay awake the following day. So that is not something that I'd do ever again. One dose of 10 mg nightly is all I need. I am baffled by your doctor's adamancy. Perhaps he/she is concerned about how the medication may impact aspects of your medical issues.

Jump to this post

God Bless You! I have a lot of the same ailments (Fibromyalgia & Raynauds) like you, Flexeril is the only muscle relaxant I can tolerate. I was warned by my new primary that Flexeril can cause short term memory loss.....but he said it sounded like the quality of life outweighed that. It helps tremendously with fibromyalgia pain and restless legs syndrome. I can only tolerate 1/2 of a 5 mg. Hugs & Blessings to you....

REPLY
@covidstinks2023

God Bless You! I have a lot of the same ailments (Fibromyalgia & Raynauds) like you, Flexeril is the only muscle relaxant I can tolerate. I was warned by my new primary that Flexeril can cause short term memory loss.....but he said it sounded like the quality of life outweighed that. It helps tremendously with fibromyalgia pain and restless legs syndrome. I can only tolerate 1/2 of a 5 mg. Hugs & Blessings to you....

Jump to this post

I'm happy that the info in my post is helpful and validating to what you experience. At a recent followup visit with my primary, she asked if I wanted to change to a different medication, on the chance that my body had become too habituated to the cyclo, suggesting that another could target some of the other pain issues that I deal with. But I told her no, and she respects my decision. A few months ago, she gave me the green light for medical marijuana for issues not related to fibromyalgic pain, but instead pertained to chronic pain syndrome and complex regional pain syndrome...but after much consideration, research, and evaluation, I decided it was not a path for me.
You are correct: Quality of life is preferred to just living in a purgatory of pain, which can at times escalate into a horrendous hell. One has to strike a tolerable balance.
I wish you the best possible, and may you achieve the balance that brings you peace
and joy. 🌺

REPLY

Elavil(Amitrypline) helped my severe leg pain and sleep. You take it before bed. Ask for it.

REPLY
@kimmycorvette1

Elavil(Amitrypline) helped my severe leg pain and sleep. You take it before bed. Ask for it.

Jump to this post

I could not tolerate this medication even in a child's liquid dose, but, I am so glad it works for you. Is your favorite car a Corvette? Prayers & Hugs.

REPLY

0h. Ok! Yea we had a brand new red vette.

REPLY

I fell bad for you...my wife has RA and fibromyalgia.
Read the Yeast Syndrome by Dr Trowbridge. I took my wife to one of the doctors in that book and he put her on a strict diet,gave her antifungal and sent her to an allergist. Peppers make her fibro flare up bad!!
I read it for another reason. But it turns out it causes inflammation too. Kill the yeast. Learn to decrease inflammation in your body. I've been dealing with this since 1995. Learned so much! but there are an incredible amount of variables. It seems diet it the key...I hate diets!! So I do antifungal to help. Hope this helps.

REPLY
Please sign in or register to post a reply.