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Fibromyalgia Medication and treatment
Fibromyalgia | Last Active: Aug 3, 2023 | Replies (120)Comment receiving replies
alrod, Thanks for the advice! I have not trird Lyrica. I will look it up and do some research. If you Google Dr. Rawls about Lyme Disease you will find several refferences about Lyme, Fibro and Chronic Fatigue. They all seem to have similar symptoms. It talks about how you have to live you life. Unless you talk to a person who has had it most people don't understand what you are going through!
It is very hard to control yourself when you have a good day, not to overdue it. I had one of those weeks this week. Felt really GOOD! Went out and did my normal routine and was down for two days.
VERY FRUSTRATING.
My biggest areas of pain have been my Headaches! Have treid everything. About three months ago I realized that I was suffering more from the meds than I was from the disease.
Told them to shove all of them! Took two months to wind some down but after felt better in some ways. My PCD and I worked out a plan that helps. Reluctant to mention it because of the BACKLASH I get from people when I tell them what it is.
Main thing it has helped the headaches 100%, that's what is important. I can deal with the other symptoms as they come, it was just trying to function with a constant headache.
Good Luck!
Keep me Posted.
Sundance(RB)
Replies to "alrod, Thanks for the advice! I have not trird Lyrica. I will look it up and..."
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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!!