CFS or Neurological Disorder

Discussion in 'Fibromyalgia Main Forum' started by fkm, Sep 2, 2008.

  1. fkm

    fkm New Member

    Hoping to get some feedback from any of you with CFS experience. My main concern is whether I have CFS or possible neurological disorder or some other disorder.

    Just to mention timeline, I have had IBS, pain disorders (not Fibro though, don't have any tender points and pain was more visceral than muscular) and hypersomnia for about 8 years. No longer have pain but been replaced with considerable limb fatigue.

    Got EBV infection 3 years ago. Interestingly, I was not fatigued during the infection, but only started feeling fatigue in certain muscles 3 months after its resolution (foot and left eye muscles affected first). Worryingly, this fatigue began to spread over months and years to other muscles eg up my leg, right eye muscles, arms affected etc.. and I could notice muscle twiching occurring all over (particularly in my legs). The fatigue, almost like a feeling of weakness and minor non-visible twitching, can be felt even when I am awake in the morning and lying down in my bed. It's like I just don't feel like I've much energy left in my legs or like I just ran a long marathon.

    Don't seem to have any post-exertional malaise which I find unusual if this was CFS. The progressive and migrating nature motivated me to visit 2 neurologists who only performed a physical exam. Felt nothing was wrong and turned down my requests for EMG's which I wanted for peace of mind. Also been tested for Lyme etc. and saw an endocrinologist just before all this started 3 years ago (nothing remarkable found).

    No longer know where to go here, whether should pursue further neurological testing or go down the CFS road. I've even considered the mercury amalgam controversy as I have had fillings since i was a child but remain dubious of possible health effects. You try to seek answers and solutions but it can be a draining experience. Any thoughts?

  2. ladybugmandy

    ladybugmandy Member

    hello. did you have some of these symptoms before the EBV infection or did everything start after?

  3. fkm

    fkm New Member

    IBS, Pain and Sleepiness I had before EBV infection. What started afterwards was muscular fatigue and twitching...

    I appreciate the association between EBV and CFS though wasnt' aware of a pattern where it may emerge months after such an infection where I did not experience fatigue coupled with one which reflects a specific distribution and migration pattern among certain muscles.[This Message was Edited on 09/02/2008]
    [This Message was Edited on 09/02/2008]
  4. spacee

    spacee Member

    Please, never go to a neurologist and volunteer that you have CFS, or MAY have CFS, or a doctor said you may have CFS. They hate that "CFS" with a passion. I just saw a neuro about 2 weeks ago and in a very vague tone he said, "I've heard of Chronic Fatigue Syndrome". Which I took for code meaning "you will never be my patient".

    I do think another neuro might give you some insight. I agree you do not sound like typical CFS. I attended a CFS convention and I could not believe the number of people using scooters but that might have been because of their fatigue.

    My pcp thinks that he is as good as any cardiologist, neurologist, etc. and will order any test I ask for. I should have just stuck with him since the neuro only asked me "who is your psychiatrist". I don't have one. I think he was hinting in which direction I should go. Will your pcp order the EMG?

    Do hope you you find some help.

    [This Message was Edited on 09/02/2008]