Problems with walking

Discussion in 'Fibromyalgia Main Forum' started by I'mjoyce, Nov 17, 2002.

  1. I'mjoyce

    I'mjoyce New Member

    Hi everyone. I'm new to this site and was wondering if anyone else was having trouble walking. I don't mean just stumbling. For the last year or so it seems like my legs and my brain just aren't connected. Without looking down I really can't tell where my legs are. Needless to say, this causes more than a few problems when negotiating a dark walkway. I had a neuro workup done with all tests 'within normal range'. I've had Fibromyalgia since mid-January 1996 and can relate to the pain and frustration. If anyone else had this same problem, please respond. I hate feeling like I'm the only one. Thanks.
  2. I'mjoyce

    I'mjoyce New Member

    Hi everyone. I'm new to this site and was wondering if anyone else was having trouble walking. I don't mean just stumbling. For the last year or so it seems like my legs and my brain just aren't connected. Without looking down I really can't tell where my legs are. Needless to say, this causes more than a few problems when negotiating a dark walkway. I had a neuro workup done with all tests 'within normal range'. I've had Fibromyalgia since mid-January 1996 and can relate to the pain and frustration. If anyone else had this same problem, please respond. I hate feeling like I'm the only one. Thanks.
  3. joyof3

    joyof3 New Member

    I get the same feeling in my legs. my legs and brain don't work as one. my brain has been out to lunch for a good year.hope you get an answer soon.

    stephanie
  4. karen2002

    karen2002 New Member

    Remember the scarecrow in the Wizard of Oz...when Dorothy lets him down off the pole---yep thats me!
    Not only don't my legs respond, but arms, hands, and especially dialog---can vary from day to day---like I short circuit.
    My best defense is humor...so I just sing "If I only had a brain", I can keep everyone in stitches.
    One day, will my husband and I were driving, he bought me a little half pint of milk at a convienance store.
    I was drinking....and all of a sudden I started choking, laughing, and no kidding....spewing huge quanties of milk out my nose--it was everywhere!!
    I told him when I could finally talk--it was like I had forgotten how to swallow, I just couldn't remember. He told me I was a fun date--hey after 26 yrs. you have to keep them on their toes! So if all your neuro test came back with good results....try to modify what you do..to keep yourself safe.
    Karen
  5. astra

    astra New Member

    Dear Joyce,

    This is my first time sending a message on this website. Quite exciting to see how much benefit everyone is receiving from this kind of two-way correspondence. We are so isolated in this illness, and it's great to be able to support each other with our own Knowledge of the disease, and our own experience. Also exciting to see renowned doctors put out their articles.

    In 1991 I began to suffer from severe seizures, which caused an impairment of my mobility. I was unable to stand, walk, use my arms...all the gross motor coordination skills as well as all the minor ones. My brain seemed severely damaged, unable to produce normal thought patterns, and I ended up in an electric wheelchair by the beginning of 1994 where I was virtually paralyzed like a quadraplegic. And mostly bedridden.

    The good news is that in 8 eyars I have been able to work with nutritional products, and am starting to walk a little around the house again, only need to use the electric wheelchair when I'm going out, as my energy levels are reduced by about 50% to 75% depending on the situation. I was unable to travel for most of that time,and have only recently (this year) been able to go to town and do my own shopping. Yes, it can get that bad.

    Since 1994 I have not seen any doctors, as I was mistreated quite severely in hospital, so I decided to heal myself. It has taken a lot of hard work, study and money to get this far.

    It terms of nutritional support, I find that the pure foods and herbs, such as Spirulina, and herbs that can help the brain to repair, such as Brahmi or Gingko Bilboba, are the best remedies. I also take a lot of Vit C (Esther C or Amla berries) , Lactobaccilus for the digestive system, and many other products to encourage the body to perform better.

    It is a long and arduous process of learning about nutrition, and trial and error.

    There is some mention in Dr Goldstein's literature and that of others, that the brain is affected by a disturbed brain metabolism and that it can develop lesions and other patterns of malfunctioning behaviour.

    I have studied a lot of literature on the subject, though don't have the ability to remember the language. So would need to check my notes to describe it in more detail.

    One thing that my Naturapath said to me in 1994, was that the only way I could recover was to stop walking to give the brain a chance to recover. This has taken all of 8 years, and still a long way to go.

    I suspect that the earlier you can be aware of how to manage the illness, the less damge is done. The more you work at top speed, ignore the symptoms, the worse the condition can get. I was always very obstinate, and pigheaded, and refused to accept for a long time how ill I was. And it seemed like the only way I could stop was to have a serious collapse that made me come to terms with the seriousness of the disease.

    Unfortunately there is little real support from doctors and therapists. It's still a new field. Many of us have sypmtoms that are quite unique...don't follow the normal pettern of CFS/ME, and dazzle the doctors. EVen after all this struggling, my local doctor whom I use as a 'paper doctor' to help me with filling out forms etc, is not willing to understand the severe nature of my condition which Goldstein refers to as "a psycho-neruo-immune
    disease".

    Hope this helps a little in understanding your own condition. But please don't feel that your situation is hopeless, as with proper care and nutiritional support, you can improve.

    With lots of encouragement and compassion
    a fellow sufferer