CFSers: what was the basis for your diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by gcalex, Apr 16, 2003.

  1. gcalex

    gcalex New Member

    Were you diagnosed based purely on symptoms, or was it a combination of symptoms and some of the so-called "markers" for the disease? Or is anyone out there like me who doesn't have a formal diagnosis yet? Thanks, JIM
  2. gcalex

    gcalex New Member

    May I ask what other symptoms other than fatigue formed the basis of your diagnosis?
  3. gcalex

    gcalex New Member

    Quite a list, god bless you and I wish you well. My own case is a bit more ambiguous. I have the fatigue, headaches, exercise intolerance and sleep difficulty, but no cognitive problems, specific signs of immune dysfunction, GI symptoms, or orthostatic intolerance. Plus I have a life that is unusually stressful due to circumstances with children. So the doctors really don't know what to make of me, I don't quite fit the classic CFIDS mold, on the other hand my symptoms seem too extreme to be just depression/stress. Well, thank you for responding and best wishes.
  4. gcalex

    gcalex New Member

    Hoping for more responses, thank you.
  5. 2girls

    2girls New Member

    My diagnosis was basically by process of elimination (blood tests, MRI, exrays) and symptoms. My primary doc sent me to his collegue who made the diagnosis. Problem is, my primary doc thinks it is a wastebasket diagnosis.

  6. Lendi

    Lendi New Member

    Hi, gcalex. I had what seemed like every test in the world, except for the ones I hear we should have. My test mostly came back ok, except for my sleep study and I basically don't sleep and when I do it's in stage 2. This is often the case for CFS. Anyway, the rest of the diagnosis came from symptoms and since I have almost all of them, it didnt' take too long to be diagnosed. My primary care physician didn't believe in it though, so I now have a different one. It was a neurologist that diagnosed CFS and a rheumy who diagnosed FM. Good luck to you. Keep searching and remember that knowledge is power. Hugs, Lendi
  7. gcalex

    gcalex New Member

    Did they make any recommendations as a result of your sleep study?
  8. Madelyn

    Madelyn New Member

    My Dr. gave me an "official" diagnosis last summer based on the CDC guidelines, I believe. Labs revealing reactivated EBV and other blood results ( don't have my notes from the visit in front of me ), along with symptom list, made me official.( Yay! I've really got CFIDS!!...Wait a minute...)
    Symptoms include:
    FATIGUE, long lasting, post exertional, and most other kinds
    exercise intolerance
    weight loss
    poor sleep
    depression and anxiety have plagued me on and off but I'm not sure this is part of CFIDS for me
    Actually, I can't remember which symptoms were uppermost then besides these. New ones have been evolving since then too.
    [This Message was Edited on 04/17/2003]
  9. marta

    marta New Member

    ....the same criteria as Madelyn's. I have most trouble with sleep thus fatigue and all the ramifications of not getting enough good rest.

    My situation is now complicated by a sleep study evaluation of "depression and anxiety". My current doctor buys that dx 100% and so pushes antidepressants which I cannot tolerate. During the study I had only 11% REM sleep and no delta sleep, as well as RLS (restless leg syndrome).

    I plan to find another doctor. (Thank you, I just decided that.) I sincerely believe that the depression and anxiety are the tail, not the dog.

  10. layinglow

    layinglow New Member

    The CDC criteria should not be thought of as final guidelines in diagnosing CFS. Research has shown the people with disabling fatigue who fit the CFS criteria have the same immunologic changes and responses to treatment as those who don't fit the criteria.

    According to Edward J. Conley, D.O, author of America Exhausted, "At least 50 percent of the patients we see for CFS do not have symptoms severe enough to be classified as CFS, but that does not mean these people are healthy. They just don't fit a committee's definition for CFS."

    "My experience also suggests that the underlying causes and the response to treatment are not affected by whether patients strictly meet CDC guides," says Jacob Teitelbaum, M.D. "I prefer to use the term Severe Chronic Fatigue States (SCFS) for these conditions."

    In his book, From Fatigued to Fantastic, Dr. Teitelbaum states that it is important to look for and treat all of the factors simultaneously. Chronic fatigue states are unusual in that each problem can trigger other problems. Because of this, it is rare to find only one single underlying problem by the time the patient seeks medical help.

    I copied this from the link on the homepage here under Chronic Fatigue Syndrome (It also includes the CDC's definition)

    Fatigue must be present...and then 4 secondary symptoms are neccessary under CDC criteria. Just because you are lacking one secondary symptom, in my mind, is not justification for a lack of diagnosis that you have A Fatigue State. You didn't mention how long you have been experiencing this---perhaps you have not developed other symptoms yet, or they are not as noticeable, as the others are more severe and taking precedent. I would not let the lack of diagnosis deter you from treatment. Those whose disorders have progressed for years, often find treatment less fulfilling than those who begin at early onset or have less symptoms.

    I have recently been dx'ed with both FM and CFS, an early diagnosis at onset, and aggressive treatment initiated early in the course of these disorders. I believe that is why I have made significant gains.

    Best wishes,
  11. sue t

    sue t New Member

    much like most of those with CFS.

    Over a period of 3 years or so I had various unexplainable "illnesses" and was beginning to think I was a hypocondriac (sp)! Docs did loads of tests and investigations but nothing showed up of much significance.
    I was referrred to a specialist who finally, based on my symptoms of -
    extreme tiredness
    aches pains and numbness
    muscle weakness
    exhaustion after very little effort
    VERY irritable bowel!
    night sweats
    waking up more tired than when I went to sleep

    and the list goes on................

    diagnosed me with CFS and has been a great support ever since.

    I find main symptoms of aches/pains/headaches/tiredness are there almost constantly but I have learned to "cope" better with them. It is the ones that pop up out of the blue - like the recent numbness and loss of sensation in my fingers which rather **** me off - but hey they usually pass.

  12. praisingHim

    praisingHim New Member

    My doctor never really gave me the name CFS, because he says he does not like to give labels. His theory is that when our "rain barrel gets full" we start to develop symptoms. I do not meet the strict guidelines for CFS, but have some of the symptoms. I have had tons of tests done and all came back fine, so he is treating me for CFS, as a last result diagnosis since nothing else has shown up. I did test positive for mycoplamsa, which I am now on antibiotics. I found a integrative physician who tested me for this. My main symptom is fatigue, but I also have anxiety, post exertional fatigue, unrefreshed sleep, and too many other "minor" things to list. If you are under a lot of stress, try to get help with that. I notice my fatigue gets much better when I get a handle on mine. Have a blessed day!