Fresh from the CFS speciaist....

Discussion in 'Fibromyalgia Main Forum' started by T-BO, May 23, 2003.

  1. T-BO

    T-BO New Member

    Well everyone, I lugged my ass all the way from winnipeg to ottawa and then toronto last week. The CFS specialist was in ottawa.
    After an hour and a half appointment, the doctor told me that I definitly DO NOT have CFS. I am classified as having a post-viral fatigue, which apperantly is much less severe than CFS. One thing I do share in common with CFSers though is that I am chronicly fatigued and have brain fog.

    The good news is that I was perscribed a medication called Alertec (100mg) and it seems that it has diminished about 20-30% of my mental fatigue. I feel more alert but my vision is still kind of funny so this is obviously not a cure. My bodily fatigue is still present but it seems that it is easier to cope with than the mental fatigue I had.

    I would also like to mention that alertec is a narcotic and is commonly used in narcoleptics for sleepiness. No I am not narcoleptic but the medication also benifits people with fatigue related problems.

    As for my prognosis, the doctor said that I will eventually get better and not to worry. He suggested graded exercise (short walks that increase by 1min per week) and aroma therapy but we all know how tough exercise can be! I am still planning to try though.

    Well, I just thought I'd share some info with everyone on the board and say that the medication is benifiting me to a certain extent. Life is a bit more bearable in the past 2 days.

    I hope it lasts!!!

    Peace out,

  2. sb439

    sb439 New Member

    Very glad your doctor says that you're not very badly ill, and got such good results with the meds so quickly. Fantastic!
    Just thought I mention that seven years ago I saw some heart specialist (for unexplainable tachycardia, now I know it was my adrenals f***ing up), and he said I was basically healthy, just some post-viral fatigue, and it would take care of itself, do graded exercises. Anyhow, four years later I got bad CFIDS (not that I was ever really healthy in between), triggered then probably by very bad stress. So even if you're not too bad now, as long as you don't know the cause of your feeling ill, it may be good to plan for a low-stress life - until such time you feel 100% healthy.
    Hope you don't mind me writing this ...
    All the best,
    [This Message was Edited on 05/23/2003]
  3. Princessraye

    Princessraye New Member

    Did the Dr. say how he determined that you did not have CFS? Just curious.
    I hope this is the beginning of you getting better and better. !
  4. T-BO

    T-BO New Member

    Hello everyone. Thank you for all the positive comments!

    Yes, it feels pretty good to feel improvement seeing how I have been struggling with this for the past year and a half!

    Now to answer some questions.

    In regards to the doctor I saw, it was Dr. Jain. He was very thourough and informative and obviously got me out of a huge slump. It is unfortunate though, that he is ending his practice at the end of the month. Hopefully the co-cure website will updated sometimes soon because many doctors on their are ending their practice or have enough patience already.

    The way the DOC diagnosed that I DO NOT have CFS is because all blood tests were normal (very many), MRI, CT scans, sleep study, etc. (normal). Also, the only symptoms I have are presistent fatigue and brain fog/ poor concentration so I don't have enough symptoms to meet CFS standards (eg. joint/ muscle pain, swollen nodes, low grade fever, etc.)
    Also things like a tilt table test proved to be normal and if I do exert myself (eg.long walk/ long day), I don't seem to "crash" like many other CFSers. The times I did crash though, I was recovered by the next day while a typical CFSer can be "crashed" for up to 3 days or more!
    And lastly, pretty much every other doctor I have seen has came to the conclusion that I have a post-viral fatigue, which Dr. Jain said was very accurate. I would also like to mention that Dr. Jain has seen thousands of patience and says that he has only a few times in his career told someone that they DO NOT have CFS or FM or ME. You might say I'm just lucky!

    In reply to susanne's comment.... Yes, I have taken the precautions of avoiding stress (mental and physical) since the day I got sick. My father is an integral part for this and is is extremly supportive. I would go to the extent to say he is a God send!! I probably would have been a thousand times worse without him!

    Well, I hope this answers some people's questions. I, myself would recommend seeing a CFS specialist! Good luck to everyone who is dealing with this DD. There is hope out there!!


    TOM[This Message was Edited on 05/23/2003]
  5. T-BO

    T-BO New Member

  6. loopyloo

    loopyloo New Member

    So glad you have a good result and have found some thing that helps and you should get better in the long run which is nice to here
    (((((((((big hugs ))))))))))))from the UK
    Loopyloo xx