It can't be that COMPLEX!!

Discussion in 'Fibromyalgia Main Forum' started by T-BO, Apr 3, 2003.

  1. T-BO

    T-BO New Member

    Don't Flame!!!!! I am only refering to MY situation.

    For those who don't know, I am 20 yrs old and have been chronicly fatigued for a little less than a year and a half now. My problem started after a bout with the flu. Everything cleared up except constant fatigue, brain fog/ spaced out feeling, and poorer concentration.

    I have done pretty much every test under the sun including tests for my immune system, MRI, thyroid, lymes, lupus, and several other blood tests, all normal. Only test that showed something was EEG (slight brain slowing) and I was told that this is not unusual even in healthy people.

    In the next month or two I am supposed to undergo a sleep study test at the U of Toronto. I am skeptical that a sleep disorder is my problem because of how this illness started plus I have tried amitriptyline 10mg for 2 weeks which did nothing. Is it possible for a sleep disorder to occur after a bout with the flu????

    I have also made an appointment to see a CFS specialist but this will not be until after the sleep study. His name is Dr.Jain and he is located in Ottawa. Should I persue the route of a specialist or am I just wasting my time???

    As you can see I am not your typical CFS suffer. Having very minimal symptoms, although quite debilitating, I am almost positive that there is a solution to my problem. I alway's find myself saying "this can't be that complex"! That's why I have come on this board to ask your opinions. Any type of input would be very valuable to me so do not hesitate to tell me what you think!

    Thanks a million!

    Peace and God bless!

  2. Achy-shaky

    Achy-shaky New Member

    Even if your symptoms started after what you say was the flu this doesn't mean your neurotransmitters in brain weren't affected. If you have fatigue you most likely have a sleep disorder...they kind of go together even if you are not aware of it or seem to get enough sleep because if you don't get stage 4 sleep you will be tired, plain and simple. That is what a sleep study will show and I highly recommend you doing it. I haven't had one but wish I could but my insurance won't pay for it. I'd also go ahead with seeing the may be able to get control of your present symptoms so they won't get worse.

    Keep us posted as to the findings.

    Peace and Blessings!
  3. layinglow

    layinglow New Member

    Chronic Fatigue Sydrome is quite common after a viral attack. From the research I have done, Kutapressin and B-12 Therapy is often very successful after viral onset.
    You may check into this when you see the specialist you mentioned. A specialist in my mind, is a great boon. I see a specialist who treats very aggressively, and keeps abreast of the latest research, has a large enough client base to have many solutions and treatments, and we have made significant progress. I think you would benefit from having an advocate.
    I had absolutely got no help from amitriptyline. Amitriptyline works for some, and doesn't work for others. I switched to klonopin months ago, and it has made a vast difference. You will find others on the board with the same experience.
    The sleep study is a good idea, as mentioned above, it is crucial to get stage 4 sleep. This is the stage of restorative sleep, where reparation is accomplished. Without it, we experience chronic fatigue, and in those with FM, muscle and nerve pain.
    There isn't a so called "normal" CFS sufferer. Although there is a list of symptoms, not all experience all those symptoms. My greatest symptom is fatigue, I never have sore throats which is a common symptom for others.
    CFS is complex, in the fact that it takes a great deal of time and experimentation, to come up with individual treatment plans. It is complex in the fact that the cause and complete cure, eludes us.
    Best luck in your quest for wellness.
  4. lou2

    lou2 New Member

    hey T-BO,
    I can sympathise with the fatigue, and i am only 22 so also i guess have the determination that i can beat this thing. I have FMS and CFS, since last feb, thought i think now my fibromyalgia symtoms are much less, for instance i am in little pain now and really its the tiredness that is the problem,
    Out of interest , do you take any supplements? I don't take any medication, only natural stuff which i see as a key recovery thing . I don't seem to have problems sleeping anymore, i fall asleep quite quickly and can sleep about 8 hrs before i get you sleep too much or not at all? I know that the diet i am on-anti candida cleared up my brain fog and haelped my concentration. And a combination of the supplements did help the fatigue.
    I tried NADH for the first time last week , i was told to take 20mg but i found i was awake till 3am when usually i sleep at 10.30, and felt well enough to go for a walk out and about. So i think with the right level then this is a good thing, but less mg's me thinks!
    Also have you had test for all the viatmin levels, my magnesium is really really low, that is something that causes fatigue. Also i have been taking 1000mg a day and had myers cocktail injections and just had my tests again and it has made no change at all! so obviusely something is stopping it being absorbed....

    About specialists, i think one for cfs is the best bet. I see specialists at a FMS /CFS clinic in London, they follow dr teitelbaums theories and its definitely useful as at least you have people who want to get you better as much as you do!!
    Ive probably babbled on a bit here, but hope its of vague use. email me (on my profile) if you want to ask anything.
    I reckon i might write a book about all this when i am cured!!!
    also i have just today completed my reiki healing level one and it is incredible, i can now reiki myself and i already feel energised..I make a point of trying all alternative therapies!
    love and good luck, Lou
    p.s i definitely think flu could have caused it, it only takes the weakeness to kick something off......
  5. T-BO

    T-BO New Member

    For such great insight!

    First off, I would like to clarify that CFS is extremly complex!!
    I just feel that MY issue with Chronic Fatigue is not that complex...... although I could be dead wrong. That's why I am asking for your opinions.

    To answer some of your questions, I don't have any trouble sleeping at night, all though falling asleep can be a chour somtimes. I generally sleep about 10 hours a night. I also find that my CF symptoms tend to stay the same 24/7 as opposed to getting progressivly better or worse. They don't tend to "wax and wain" either.

    In regards to supplements, the only thing I take are multi-vitamins. I think they help defend against colds and stuff like that because despite the fact that I am Chronicly fatigued, I don't get sick. I have tried the herbal route a few times but have found no improvement whatsoever.

    Thanks again to all that have replied and for all the lurkers and observers out there..... don't be shy to post!

    Peace and God bless!


    P.S. The doc mentioned above is from the co-cure site.
  6. T-BO

    T-BO New Member

    If not that's cool. At least I got a few responses!

    Thank You!

  7. RedB

    RedB New Member

    It happened to me! All of my symptoms came on following a bad flu-type virus.

    Definitely give Vitamin B-12 a try. It's one of the things that is definitely being found to help with exhaustion, and it has helped me, and others on this board. Your best bet is to either get regular B-12 shots from a physician (pretty pricy), or to try the sublingual (under your tongue) pills that are available through Internet sites. I get mine from a site called Trivita. And it is a dot com site.

    Good luck,
    [This Message was Edited on 04/05/2003]
  8. Sissy123

    Sissy123 New Member

    If you are starting to have symptoms of fibromyalgia, it could be starting with the flu like symptoms, and the sleeping problem. Look up a site It explains the many symptoms of fibromyalgia and chronic fatigue and sleep disorders. I had a sleep study and I was on oxycontin and still never got below a stage 2 sleep and there are 4. I woke up 96 times in 6 1/2 hours and had 15 seizures. You may wish to check this out more on that site. I know now that it is heritary and I have had it since I was a child.
  9. layinglow

    layinglow New Member

    Through the help of the Doc I was telling you about I have most of my Fibro Symptoms under control at this time. We have now begun facing the extreme exhaustion, and malaise I am experiencing. I am taking B-12 Injections and B Complex Injections at home. The expense comes in if you have to visit your Doc for these injections and incur office visits--as the vitamins are not that costly, he allows me to do the injections at home. I have seen a vast improvement, and highly recommend anyone suffering from fatigue to give this a try.
    Also when I began this regime, my Doc and I discussed the Kutapressin and B-12 therapy--decided against the Kutapressin as it has it's best results with those with a viral onset such as yours.

    The reason I am taking injections instead of oral B Vitamins, as I was not absorbing them, at all---due to the effects of IBS my gut does not absorbed much. Hopefully this will repair over time, along with the leaky gut, since we have made great progress with it. I would suggest to any who have not had results from or B Vitamins, to give the injections a try, you may find you have absorption problems, too.

    Anyway, wanted to agree with the above poster---in that I have tried most of the "fatigue remedies" with no success, but am having good results with the B12 and BComplex.

    Best wishes,
    [This Message was Edited on 04/05/2003]
  10. T-BO

    T-BO New Member

    for all the additional replies. I will take all suggestions and comments into consideration.
    Thanks to all who replied!

    Peace out and God bless!

  11. klutzo

    klutzo New Member

    Here is some good news for all you "youngsters". Research shows about one in five CFS sufferers recovers, and you are MUCH more likely to be one of them if you are young. Researchers believe that is because younger people have so much more growth hormone to be able to repair the damage with.