Question For Those Of You With Neuro Problems

Discussion in 'Fibromyalgia Main Forum' started by mersey_ferryman51, Feb 11, 2003.

  1. mersey_ferryman51

    mersey_ferryman51 New Member

    Hi Gang,

    One of my major fibro symptoms is the neuro thingy.... loss of balance problems, co-ordination, etc. etc., and I'd like to ask all of you who are experiencing is your doctor addressing this particular symptom??

    What meds are you taking for this, and how are they working for you?? Any other therapies that seem to work well for you?? Suggestions?

    Larry G.

  2. nancyneptune

    nancyneptune New Member

    not a damn thing. The docs don't care if you fall down on a daily basis. They don't care period.
  3. Carlacat

    Carlacat New Member

    He is the one who found my small nerve neuropathy and put me on neurontin which is helping with the pain and also helps with the fibro muscle pain. He is also the one who sent me to the cardiolgists because he suspected Pots and they both worked together and found out mine was autominic. I think you have to find the right neuro cause before I went to cleveland clinic I saw a couple of hum dingers who said we cant do anything for you.
  4. Mikie

    Mikie Moderator

    The Klonopin seems to help a lot with the neuro problems; it stops the mini seizures in the brain and evens things out. Like all meds, it works for some and not for others.

    Love, Mikie
  5. MelG

    MelG New Member

    Can you email me please?


  6. LauraLea

    LauraLea New Member

    have balancing problems, but enough about my checkbook. LOL

    No really I do but not as much as I use to. I don't know if it's the Rx's or less stress, but it is better now. I still bump into things a lot. I always have some nice bruises to show for it.
  7. pam_d

    pam_d New Member

    My neuro symptoms are the most frustrating aspect of FM for me!

    Even more frustrating for me is the fact that doctors often give little weight to these symptoms, and can, in fact, be condescending about them. If you stress your PAIN, they at least listen.....everybody knows what pain is, right?? But these odd neuro sensations are often hard to describe at best, and almost hard to even believe, at worst ("well, doctor, it feels like little bugs are crawling on me".....or "my muscles twitch on & off--kind of like twinkly Christmas lights"). I have had doctors look at me like I had 3 heads, then basically change the subject.

    I deal much better with the pain & fatigue of FM than I do with the neuro symptoms------although, I deal better with them now than I did when this all started. I have learned not to fight them so, & to make peace with them.

    Good luck finding a doctor who addresses these issues--- but folks here do find caring, knowledgeable doctors, so it IS possible!!

    Read here a lot----there is definitely a subset of us for whom the neuro symptoms are the worst things we experience---so a lot of good sharing goes on here!

    Take care,
    [This Message was Edited on 02/11/2003]
  8. mersey_ferryman51

    mersey_ferryman51 New Member

    I appreciate all your responses!

    Larry G.
  9. debbym

    debbym New Member

    I found that meclazine helps with my balance. No side effects either.
  10. kerrymygirl

    kerrymygirl New Member

    I fell right over in neuro`s office. He said it was my meds, I told him I was not on any then. He put tandem poor, in his report and that was that. Why, did he even bother testing me? As soon as he saw fm on my profile I was written off, could tell by his demeaner. After meningitis balance never truly returned. My girlfriend and I said when thing`s get financially so bad we will become the fibro bank robber`s because if they were shooting at us they would not be able to hit us since we are all over the place, a little fibro humor. Neurontin has helped even though it took awhile to get used to. I still have days I bounce off the walls, litterally. My pain meds help also. I just believe all are neurotransmitter`s are misfiring at different time that is why we have so many problem`s that can change from minute to minute. So good luck on your quest. Bless You!
  11. Jan

    Jan New Member

    I found that some or most of my balance problems came from over stimilation of the central nervous system. I think with fibro and cfs we have an over stimulated system as it is and we need to avoid anything that will make it worse. For me neutrasweet and msg caused extreme balance problems. Plus I got off all sugar and caffeine. That also helped. I still had some balance problems when I got anxious or tired. The doctor put me on neurontin for the neuropathy and pain and it has really helped the rest of the balance problems and my anxiety is much less. Hope this helps,
  12. Bellesmom

    Bellesmom New Member

    Yes, I have had balancing problems since this fibro/CFIDS thing started on me almost 3 years ago.

    Sometimes things fly right out of my hands and sometimes I'll just be turning around and almost fall.

    When I first got really sick with symptoms I had these awful dizzy spells - it was like flu to the max. Thank God that let up for the most part. Sometimes it feels like I might be getting it again, then it will go away. It is always lurking there.

    But I long ago cut out the major source of Nutrasweet - the gum I was chewing. I still drink coffee. That would be awfully hard for me to give up as I have nothing left!! I didn't notice that much difference without aspertame but had heard it or any fake sweetener, etc, is really bad for you.

    So balance IS a problem for me but not as much as for you, at least at this point.

  13. nefran5

    nefran5 New Member

    Problems with balance and misunderstanding speech and visual cues were among my first symptoms in 1985. I was really fortunate to find a neurologist who was doing research for NASA. I went through days of testing in his clinic and tested positive for my balance disorder. We tried various drugs and physical therapies, but the only thing which helped to minimize my symptoms was watching what I ate and drank. At his suggestion I eliminate or reduce my consumption of: chocolate (eat one little square a day--this is not a prison sentence!), alcohol, coffee, tea (I love Chinese tea and British tea--I indulge on weekends or when I can put up with the symptoms), sweets and atificial sweetners, fruit juices (dilute with filtered water) and drink plenty of filtered water. I have other neuro symptoms which have appeared over the years---but that's another story... hope this helps some...
  14. klutzo

    klutzo New Member

    Re: your User name: are you a Gerry and the Pacemakers fan???
    Anything that helps you get some deep sleep will help these problems. In the beginning, I used to fall down a lot, but once I got something to help me sleep, it got a lot better. We all have to try different things until we find something that works for us.
  15. susabar

    susabar New Member

    I also had and or have all of those symptoms when I am in a flare. I don't know for sure but my symptoms got better after I did some aqua therapy. I though maybe trying to stay balanced in deep water on one foot etc... helped me.
    it could be just a coincidence.
    Good Luck !!!
  16. lostnfound

    lostnfound New Member

    Neuro problems? Who, me? Hi, everyone. Yes, I have had a lot of problems with different symptoms, to the extent that at one point I was almost certain I had had a stroke. Fortunately for me, my doc is a good listener and knows me well enough to take my "complaints" seriously, so off to the neurologist I went. Result: all of it attributes strictly to fibro except for my carpal tunnel syndrome and some real osteoarthritis in my hands and feet. So, since I hate the way the pharmacopiea make me feel and don't seem to help very much, I still routinely bump into the corners of furniture, fall over my own two feet, occasionally slur my words, get occasional "intention tremor", see off-side, get "spidery" sensations on my skin, etc. and have the scars and bruises to proove it. Sleep, when it comes, does seem to help. So does lots and lots of trying to slow down. I've learned to ignore the ignorant comments that I often receive from strangers cuz they plain don't know! As for coping, I'm learning. It also helps a lot to retain a sense of humor...after some of the best medicine I have ever had is laughter!

    Hang in there!
    [This Message was Edited on 02/13/2003]