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Aug 4, 2014
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15
Reason
DX FIBRO
Diagnosis
07/2014
Country
US
State
NY
How long did it take you to find medication that works?

I'm at the end of my rope here, I really am.

Quick background: I'm 18, male, been having symptoms for a little more than a year now, and I just got diagnosed on July 30, with fibro, CFS, and orthostatic intolerance. Since last year the pain has been so severe, around 4-5 days out of 7, I'm spending most of the day crying on my bathroom floor, vomiting, in absolute hell. The other couple of days I'm stuck home in bed or on the couch. When i go to appointments I need a ******* cane just to get around and it's incredibly embarrassing. Fibro ripped my entire life away -- my high school graduation, my friends, my relationship, my job, and all hope of supporting myself. Needless to say, not taking medication is just not an option.

First we tried Lyrica, from the 30th-4th, and the side effects were so nightmarish, there was no question -- it needed to be stopped. From the 5th through today I was starting Savella with the titration pack, and starting yesterday morning when I first woke up, the nausea (I think its a side effect) has been 110% disabling. I had to cancel two appointments because just the motion of trying to get out of bed makes me throw up. Today I called my rheum and she said to stop the Savella.

Monday we're gonna try Cymbalta. They don't want to give me tramadol, though I've asked multiple times, because I'm young and its particularly addictive when you're a kid apparently. I dont know what my other options are if for whatever the Cymbalta doesn't work.

So, I need some encouragement, because I'm very close to breaking. How long did it take you guys to find medications that work -- and for you, what are those medications? All I tale now is vitamin D once a week -- I got off my Zoloft because it wasn't working and it would have conflicted with the Lyrica -- so bad combos or interactions isn't really a concern at this point. I just need to know that this isn't the end of my options...
 
That sucks that your getting so sick and so young. Sorry about your graduation, I missed mine but for differnet reasons. But I understand! I am on my third round of new meds. I am on my 3rd day of Gabapentin. It makes me drowsy but I'm already tired all the time so that doesnt matter so much. Haven't noticed any difference in my pain levels yet. I was on Effixor but heart burn was so severe it was like a heart attack everytime I ate, which is too bad because it did help with the pain. The other one I took was Noratriptoline but it gave me hellusinations. I take Wellbutrin for depression but have been on that for years and it helps most days, other days I just break out in tears. My Dr. has suggested acupuncture, cognitive behavior therapy and mind/body meditation to help with pain symptoms. I get massages every week too. Swimming helps on high pain days but the motivation to get to the pool is hard.

Im not sure that will be helpful because my meds aren't regulated yet either. But want you to know you are alone in your pain and process. I hope that they find something that works for you soon so you can get your life back!
 
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