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.

delia74 | @delia74 | Oct 26, 2023

In reply to @kimmycorvette1 "Elavil(Amitrypline) helped my severe leg pain and sleep. You take it before bed. Ask for it." + (show)

Elavil is the brand name while amitriptyline is the generic.
Elavil was discontinued in 2000 with no explanation offered. Dispensed now by the generic name only.
You are correct that it tends to help with sleep since it can make you drowsy, and it is recommended not to take after 8 PM.
When I used to take it years ago along with cyclobenzeprine, I did have an overwhelming sleepiness, and fell into a deep but disturbing sleep, marked by an often specific repetitive, intensely frightening nightmare. Did not go cold-turkey, I got help from neurologist to taper off this drug and a couple of others. There are caveats regarding foods, supplements, and health conditions. For people who can tolerate amitriptyline, it can be beneficial.

kimmycorvette1 | @kimmycorvette1 | Oct 26, 2023

In reply to @delia74 "Elavil is the brand name while amitriptyline is the generic. Elavil was discontinued in 2000 with..." + (show)

Yea its was a miracle drug for me. I took it at bedtime around midnight. Helped lots for my non- diabetic neuropathy and severe upper legs muscle spasms.

kimmycorvette1 | @kimmycorvette1 | Oct 26, 2023

(((Hugs)))

marye2 | @marye2 | Oct 28, 2023

Get regular massages to help move fluids between muscles/tendons and that will relieve the pain. Stretches, a daily walk or so are much better than resting during the day. It sounds counterintuitive, but for this condition, movement is important to keep up strength and flexibility. Dr. Mark Tarnopolsky has written widely on the subject. In my own experience, avoiding some foods that cause inflammation has helped: potatoes, tomatoes, dairy, whole wheat (maybe old varieties are okay)), sugar and processed foods. It is sort of something that you try and track--bloodwork for allergies is not all that. Hydration is really important to avoid the "slows" where one does not feel like moving. There are also Fibromyalgia Facebook groups. Here's an article regarding the type of exercise: https://www.health.harvard.edu/blog/fibromyalgia-exercise-helps-heres-how-to-start-2020101321153#:~:text=Experts%20typically%20recommend%20any%20low,and%20stiffness%20and%20improving%20function.