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Anyone dealth with Fibro and/or Topamax?
2 Replies
ryanlynn25 - December 7

Hi! I am new and haven't been diagnosed with Fibro, but was recently referred to look into it by someone with Fibro when discussing my "odd" side affects I have developed over the last several years from Topamax.

I take Topamax (50mg/day) for Migraines and have for 3 years. Since starting Topamax, and maybe longer, my memory is somewhat fuzzy, I have developed tingling in my fingers/toes, extreme dizziness especially when going from crouching to standing, horrible forgetfulness of names/dates/events, basic mental confusion, become extremely irritable and tired, and did I say forgetful...? :)

However: these things are all listed as potential side affects from Topamax. Lately though, things have gotten worse and I've been experiencing pain during intercourse, pain during urination, frequent pain in my lower right abdomen, and frequent bowel movements. In the last 6 months alone I was diagnosed with IBS (my colonoscopy came back normal!), potential ICS and I have also had torn tendons in my hip flexor and damaged nerves in my left arm which has left me with many muscular pains such as in my shoulders legs and back.....

To me, this has all been overwhelming and scary: but after reading about Fibromyalgia it started to make sense...some things like TMJD and teeth grinding (which I definitely experience) and intolerance to cold along with hypersensitivity to medicine which I thought were just normal issues now seem to make sense.

I guess my question is: (after ALL that...) could my symptoms be caused from taking Topamax and just be 1 huge coincidence, or could they have just gotten worse in the last 3 years while I was on the Topamax and I didn't realize it? Now I'm afraid to get off of the Topamax (which was my plan) in case it's helping in any way...but I would feel so much better to be able to tie everything (nerve damage, tendon damage, IBS, ICS, fatigue, etc) together in 1 neat little package! Is that too much to hope for? Oh, and I am a physically active, otherwise healthy 25-year old female, who, before taking Topamax, never had ANY health problems besides migraines..... I would really appreciate some advice!


JJ1 - December 10

See a rhematologist. They will be able to help you with a diagnosis.


n-need2 - December 27

Please e-mail [email protected]

I too have been on Topamax for several years and now have been diagnosed with FIBRO......this is very strange.....



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