Discussion in 'Fibromyalgia Main Forum' started by catnip51, May 14, 2003.

  1. catnip51

    catnip51 New Member

    I have posted this question before but need to try again and see if anyone has had this happen with FM or CFS.
    What happened months ago was I tried to get out of a car and my legs went paralyzed and couldn't move them for a few minutes. When I was finally able to get out I walked like a leaning drunk to the house. It was some scary stuff and petrified of it happening again. Has ANYONE experienced this type of bizzare episode. Also alot of times I get a feeling of off baance when walking, comes and goes during the month. (sometimes dizziness but seems to be more off balance swyaing type of thing). I've been having alot of this type of neurological problems this year.

    Been tested for strokes, heart problems, brain MRI's etc. nothing that could explain this new stuff this year. Dr's aren't giving me any answers so I need to ask here on the boards. Could this be CFS or fibro symptoms. This is really important to me to get answers as I'm trying to shake the fear of it happening again but after 30 years the neuro stuff seems to be getting worse.

    Thanks so much

  2. goingslowlycrazy

    goingslowlycrazy New Member

    I posted about this some time I searched it out and here it is...mine was virtually a carbon copy of your experience.

    I was so scared by this temporary 'paralysis' - please help! 03/31/03 05:31 AM

    Hi all,
    I have finally been diagnosed with CFS after suffering it for the last two years - so I am fairly used to the 'totally wiped out' feeling.
    But yesterday, something happened that is scaring me. I thought I was starting a cold on Friday and rested up. Saturday was more of the same, although the cold seemed to have vanished. Then yesterday, I sat out in the garden as it was so sunny. Then my partner took me for a drive around the quarry where he works. It was fairly bumpy and I was feeling more and more off balance and nauseous. Then, when we stopped (after only about ten minutes) I physically could not move. It felt like my body had gone into paralysis from the neck down. My head felt relatively clear, but I felt like I was going to be sick at any moment and just couldn't move. It was so intense that it made me cry through frustration at being so damned useless and feeling so unbelivably ill.
    We came home and I slept for three hours, woke up feeling just as bad and went to bed early.
    It's not quite so bad today, I am back to 'normal' exhaustion levels - but my arms and particularly my legs, still feel like lead.
    I thought the 'death warmed up' feeling was bad enough...but this 'temporary paralysis' thing was really scary.
    Please help.................
    Mary xxxx

    I got several replies so if you would like to go check out the original post you will find fact, I think YOU replied to me, so we may be going round in circles..but nothing new there eh? LOL
    The dizziness was the first of my CFS symptoms and it took eighteen months to get a diagnosis of 'damaged balance system, probably due to a virus'....ya think?????
    Just another of the joys of CFS I sorry you have had this horrid, scary experience.
    Mary x
  3. MemoryLane

    MemoryLane Member

    See my post on Charcot-Marie-Tooth disease (CMT) - it may be of interest to you.

  4. layinglow

    layinglow New Member

    Cathy I have had quite a few of these episodes. Many times it would just be a portion of the body or limb. Then one night while laying in bed, I absolutely could not feel anything from my neck down. It was if all of my body had disappeared but my head. Of course I began ticking off the seconds to see if my heart would stop beating or respiration would cease---it did not.

    I have also developed many other neural symptoms, such as myclonic jerking, cognitive impairment.

    I do believe one day, we will have neurologist with a full understanding on the Central Nervous System involvement in these disorders.

    Presently I treat my neural symptoms with klonopin.

    Best wishes, LL
  5. catnip51

    catnip51 New Member

    Bumping, hoping for more replys