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Fibromyalgia Medication and treatment

Fibromyalgia | Last Active: Aug 3, 2023 | Replies (120)

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@butterflylan17

Hi Sundance! Nice to meet you! And so glad that you were finally connected with a rheumatologist that seems to be addressing some of your health issues. Its so unfortunate that the other 10 docs didn't. okay, I know this joke is bad for a support group, but I've said this many times "what do you call a Dr who gets all C's in medical school? Doctor. What do you call a doctor who gets all A's in medical school? Doctor. I have empathy for what you went through, the time, energy, money, explaining yourself over and over to each doctor and from my own experience beginning to feel a bit crazy (at one time fibro fog was putting it mildly!)

I've also taken Lyrica and Neurotin (Gabepentin). And both of those just don't work well for me. They basically have the same pharmakinetics (this is how a dr described it to me), except the Lyrica metabolizes differently in your body. I feel pretty bad every day, but when I get a flare up, it feels like my entire body is on fire from the inside out. And when I take the lyrica, etc. I wake up every day with horrible neuropathy in my hands and arms. Sometimes down my entire right leg from my hip to my toes.

I do feel that they will figure out what exactly fibromyalgia is; they just need more studies. For me, I have injections throughout my spine for the pain and I had an epidural in 2008 when they thought I might have Meningitis. And I have severe iron in my brain, which would be indicative of an early onset neurodegnerative disease. However I also found out that when I saw a Hematologist I tested positive for a rare hemachromatosis gene from both parents. And interestingly enough these injections I've gotten over the years for the horrible back pain can cause some Rare Autoimmune Disorder (I read about that on NORD). So, I guess my rather long answer is keep on keeping on! Maybe check on the NORD website and something may jog your memory about a time in your life or maybe they just haven't figured it out yet. I hope you have a great weekend! Sending positive thoughts your way! And to all!!

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Replies to "Hi Sundance! Nice to meet you! And so glad that you were finally connected with a..."

Butterfly how true with what you say! You throw Lyme Disease, Fibromyalgia, and Chronic fatigue and maybe Lupus all under one blanket and to me shows treating these diseases was not taught in Med School!
I've given up trying to explain them to others who have not experienced them. Just as I don't talk about what drugs I take to try and have somewhat of a normal life!
In my case I know I am older and with that comes certain things I can't do anymore! But with the above diseases it takes it a step further.
But in saying all of that, I AM STILL A BELIVER THAT EVERYTHING HAPPENS FOR A REASON! Accept what you are given and go with the flow.
One Great thing that has come from all of this is this site, Mayo Connect! I have met so many WONDERFUL people who have given guidance and support to myself and others!
Thanks,
Sundance(RB)