Fibromyalgia -- Need help on how to handle severe pain
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.
Habits work so much better than trying to find motivation or willpower. I needed to stop deciding whether or not to get up and do as I planned: I need to just get up and do it...every day.
It was the small case r that made me unsure 😊
Thanks for sharing what works for you. It is always so helpful.
I wish I could take the strong narcotics like percs and vicoden, those absolutely took my pain away but I got so terribly backed up and with chronic diverticulitis, I ended up with an 8 day stay in the hospital (one of four). That was with taking the super sweet (yuck) prescription for constipation.
We do need to find what works for us. I just wanted to mention the down side of the narcotics. For some reason, they put Tramadol into the same category though it is formulated to act as one. Sure there is a risk of overusing and thus addiction but only because it works. I knw that if I take more than prescribed, I'll run out. It just seems simple to me.
I can't take Tramadol--gastric distress led me to rename it "damn-it-all. Constipation is always an issue with some regular prescriptions. No problem at a low dose for me. My NSAID worked great, but had some bad kidney numbers, so had to move on. A daily walk, fiber and check with your doctor about ducolax, etc. I am really working on being better hydrated all around, too
I'm shocked your RA doc would refer you to your family doctor for this since that's usually what Rheumatologists deal with. My Rheumatologist put me on a med called Topirimate (I think that's how it's spelled) and it has helped so much. I've even lost weight while on it!!! Always a plus, right? It's taken so much of the tingling and achiness away. You might suggest this med to your RA doc. I hope this will help you. It sure has helped me.. Good luck.
Shirley
I've called several rheumatologists in my state and they all only diagnose fibro and don't treat it. I am going to a pain clinic in two weeks hoping they can help me. I want to ask about low dose naltrexone, a newer treatment for chronic pain. It's supposed to have fewer side effects than the drugs now recommended for fibro and it doesn't have withdrawal issues. I tried acupuncture this week and it caused a flare up of my pain so I don't know if I should have another treatment.
Mental state is so important in managing chronic pain. This is especially true of fibromyalgia. Please check out this article about ways to manage pain using your mind: https://www.paintreatmentdirectory.com/posts/six-ways-to-use-your-brain-to-heal-your-pain
I am so sorry that accupuncture didn't work out for you. Very early on, I tried TENS (electrical stimulaton) and it had an awful effect on me. It was downright painful. Later I tried a chiropractor and it hurt. I'm so jealous of those who find relief being cracked (no one with fibro that I'm aware of). I plan to ask my doctor about a medication mentioned here. It's used to prevent migraines of which I get up to 7 times per month. Topamax, I think is the name. It also helps with nerve pain and fibro. I hope to switch from Tramadol to that. I would love something to help with evening pain without it disturbing my sleep.
Take care and I hope you find relief soon.
~Vikki
Hi,
I'm sorry you are going through this pain, and I completely understand and empathize with anyone with Fibromyalgia.
I've been battling long covid syndrome since 12/2020, and my 2nd neurologist diagnosed me with Fibro in March 2023. I saw a rheumatologist in October 2022 who thought everything was "in my head" and basically pushed me out her door. The neurologist also had an EMG done and I also have Polyneuropathy.
The neurologist told me to contact my Primary care provider and get a referral to pain management clinic, & was told they don't "deal" with Fibromyalgia pain. Thankfully my Primary has experience with Fibromyalgia, in addition to the long covid syndrome and is managing my pain meds herself.
In the morning, I take 2 - 650mg acetaminophen tablets, if pain is still not tolerable in 2-3 hours, I have a prescription for Tramadol and take 1 50mg tablet if needed.
I have prescriptions for Lyrica 75mg & cyclobenzaprine that I take before bed if needed. I also take 1 -20mg duloxetine at lunch time. I have not had any reactions to duloxetine, but the Lyrica makes me very groggy.
I hope you are able to get some relief from the pain and can find a provider to help you.
I'm afraid to take duloxetine (Cymbalta) because I've read it has terrible withdrawal issues if you ever want to discontinue it. I've heard Lyrica has the same issues. I imagine my PC doctor, and other doctors in my area, won't prescribe Tramadol until I try other meds first. I might have to break down my fear of meds to get pain relief. Next week, I'm going to a pain clinic and another clinic that deals with fibro and will ask about low dose naltrexone and medical marijuana. I heard LDN might take a while to be effective.