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Fibromyalgia -- Need help on how to handle severe pain

Fibromyalgia | Last Active: Oct 29, 2023 | Replies (156)

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@mamawnebel

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

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Replies to "I'm shocked your RA doc would refer you to your family doctor for this since that's..."

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.

@mamawnebel
I am surprised that a rheumatologist prescribed this medication since it has the very real potential to create issues that fibromyalgia patients already encounter, and thus can very well aggravate, such as arthralgia, muscle spasms, myalgia, sleep disturbance.

Topirimate (generic form of Topamax) has many caveats, none of which I was informed by the neurologist who prescribed it in attempt to deal with my intense migraines. Caveats for this medication for anyone with glaucoma (can increase eye pressure), cold hands/feet (Raynaud's), gait disturbance and many more.
I took the brand named one, but check online for side-by-side listings of the very real medical issues what that this medication has the very real potential to create. I wish I had known 20 years ago, but I unfortunately had such trust in the private neurologist who prescribed Topamax, Depokote, and other meds. I'll address the Topamax because I had to cease the Depokote after just one dose: Yes, I lost significant weight (which I had no need to at the time), over a period of about 2 to 3 months. Had severe dry mouth, a real problem when as a teacher I talk all day long, but was also accompanied by hyper salivation which then caused a disgusting, embarrassing "foamy" substance to form at edges of my mouth. My tongue felt hot and dry, and would literally get stuck to roof of my mouth. Drinking water to combat the dry mouth then created the need to take bathroom breaks, which was difficult while teaching back-to-back classes (in a high school). (Everyone knows that teachers are supposed to "hold it" until lunch time or a prep period in which you don't have students!). That in turn created bladder problems. I wasn't making connections with any of these and other issues as being side effects. I had many more...but when the auditory and visual hallucinations set in, along with night terrors, overwhelming fatigue and musculoskeletal issues, brain-drag, and hair loss, I visited my primary care doctor who did a "check" on the drugs I was on, and she firmly advised me to eliminate this med and two others. I did so carefully, with the guidance of a neurologist (recommended by my primary) who created a "weaning" schedule/calendar for me. (Not supposed to "just stop" this and other meds, or risk potentially fatal results.) It was HELL, and took many MONTHS to accomplish this, but I succeeded. I had been going through a prolonged, problematic and early menopause, and when I stopped menstruating altogether, the migraines lifted! So no need for harsh meds that had made my life more of a hell than I was already dealing with.

I share all of this as a way of bringing awareness that not all meds are a panacea. They can also open up a veritable Pandora's box...