What are your neuro. symptoms?

Discussion in 'Fibromyalgia Main Forum' started by severina, Apr 27, 2003.

  1. severina

    severina New Member

    I have been reading that a lot of you here suffer from neurological symptoms and I just wanted to know what they are and how they affect you,and what, if anything, eases them.
  2. AlaSnoopy

    AlaSnoopy New Member

    My first symptoms weren't neuro, they were the typical body pain! Yet this past year I have gone down hill so bad! What I didn't realize was that I was slowly deteriating! I will tell you now that I have probably spelled wrong most of the words in here! I have muscle spasm, loss of concentration, my extremites tingle and/or go numb. My face goes numb! I can't think of simple words when I am talking at times, and it takes me so much longer to read things. I drop things when I carry them, like the ham on Easter! Most times other people who don't know me real well don't notice it, I can fake it, but my family notices it. I even fooled them for a while because I was embarrassed! I am seeing Dr. Heffez in Chicago, he is my last hope so to speak! He has me on Topamax twice a day. He does help a lot. I am still getting worse, but I was even worse before that. I wish you the best!
  3. severina

    severina New Member

    ..for your reply.
    I am suffering from these too. Mostly all the time facial numbness/tingling - its quite disturbing but Ive learnt to live with it. This site has made me realise that Im not alone in my bizarre symptoms.
    All the best.
  4. pam_d

    pam_d New Member

    I am the opposite from Alasnoopy------my first symptoms were neuro ones, not pain & fatigue. In fact my first visit to a doctor was a neurologist, rather than a rheumy or physical med doctor or someone else that might specialize in diagnosing FM/CFS----I assumed that I had MS, Parkinson's, lyme or some other neuro disease, FM never even occured to me. I started out with tingling in my extremities (no numbness, just tingling), mainly in my feet. Then I started getting muscle twitching all over my body---it migrated a lot depending on the day. Then my big toes started twitching very visibly at times-----still have this symptom, but it comes & goes. My hands feel horribly swollen & inflamed, but weren't actually---they just feel that way. My face sometimes feels prickly & tingly, but that, too, doesn't last, it just comes & goes. I also have times where I feel like little ants are crawling over my skin---you want to scratch or flick them off, but they aren't there, it just feels that way. People with restless leg syndrome get this, too, but more in their legs---mine can be all over, & I can go months without feeling it, but then it will be there again. I have other sensations, too, but these are the most common for me.

    Tons of MRIs, spinal tap, EMGs, etc. revealed nothing. Later on, I began to get pain & fatigue (though never as great as others here) & it was only then that I began to research FM & found out that there is a definite subset of FM sufferers who experience these odd neuro sensations. It took two more years to be dx'd with FM.

    I'm pretty used to these symptoms, though they bother me a lot at times. I honestly feel that when they are at a peak, they are every bit as "painful" & debilitating to the sufferer as true pain. I have trouble convincing doctors to take them seriously----they love to discuss your pain & fatigue, but look at you like you have three heads when you talk about the neuro aspects of this disease, or brush it aside like it doesn't "matter" as much as pain or fatigue. I have lots of disturbing drug side effects, so I shy away from them myself, but I know Klonopin has been recommended for the twitching issues. Some people have said Neurontin helped with some of the tingly stuff (I tried this early on & it only gave me headaches & dizziness-----but I'm real drug-sensitive).

    Good luck, Severina----let us know if you stumble upon anything that works for you. You are definitely not alone in this, I've been writing for months about this---not everyone has these symptoms, but there is a definite group of us!


  5. kar1953

    kar1953 New Member

    I have had tingling in my legs & feet (left side most) for quite some time. At times my left foot would go numb. Now my right one goes numb too. I had all this before I was dx'd with fms. I don't get the facial tingling/numbness but there are times I could swear there are bugs crawling on me - but none there. It's weird.

    If I've learned nothing else, I've learned that this DD can cause a ton of very strange symptoms & not all fms folks get them all.

    If you find something to help the tingling let us know. I will see my doc May 9th & have a whoooooole list of questions - the tingling is amoung them. I'll let you know what he says - provided I can remember til then!!

    Take care.....Kathi