CFS patient:what is your major symptom?do i have this condition?

Discussion in 'Fibromyalgia Main Forum' started by DADI, Jul 15, 2008.

  1. DADI

    DADI New Member


    I was dx with CFS 10 years ago and my major complain is Gastric.No pain,never.Cognitive problems and fatigue 2/3 times a year (lasting for about 2 month) ,and then back to normal for another few month.No post exercise malaise except during crisis periods.

    Do you think I've CFS?
  2. mbofov

    mbofov Active Member

    I think the hallmark of CFS is post-exertional malaise and this is my chief symptom. Any time I over do it, I crash and am out of commission for 2-3 days. I also get sick every time I crash. I generally am able to do things for about 3 hours a day, and can't go past that if I don't want to crash.

    A lot of people with CFS have digestive problems, but it's possible that you just have digestive problems and not CFS, which I think would be a good thing because digestive problems are easier to deal with.

    I used to have a myriad of digestive problems including toxic liver (which made me feel sick and tired), inflamed gallbladder, stuck ileocecal valve (yeah, this was new to me too), plugged bile duct, maybe more.

    A chiropractor who was very good at muscle testing helped me with all of these problems. He was able to see what was going on with the testing, and then recommended supplements by Standard Process which helped enormously.

    Also, I had seen regular doctors for all of these problems (only I didn't know what was wrong, except I just was sick and tired and digestion was off). Anyways, none of the doctors were able to find out what was going on. Nothing showed up on their tests and if I had stuck with them, I'm sure my digestion would just have continued to deteriorate.

    What helped me the most were digestive enzymes with hydrochloric acid, and a major liver detox (for chemical solvents from a job I had over 20 years ago). Again, the muscle testing showed the problem.

    My digestion now is very good, but I still have CFS - lack of stamina in general and always the threat of crashing.

    I think if you can resolve your digestive difficulties, then you'll be able to see if you have CFS. But it sounds like you need to go outside the mainstream medical box, if you've been having gastric problems for 10 years. Naturopaths are another alternative. They'll look at your diet and all supplements and meds you're taking. For me the regular docs were useless and helpless re digestive problems.

    Good luck --

  3. pepper

    pepper New Member

    I have had CFS for 15 yrs. My main symptom is total exhaustion. I wake up in the morning exhausted and it gets worse as the day goes on. Anything I do, physical, mental or emotional, makes the exhaustion worse and it takes hours or days to recover depending on what it is I have done.

    When I first came down with this, I couldn't believe that a person could be so exhausted and not be dead. I am now "used" to it, in that I know that it isn't going to kill me. It just feels that way a lot of the time.

    I don't understand how you could be dx with CFS without post-exertional malaise.

    It sounds like you have something else and need further investigation. Good luck finding out what it is.
  4. Rafiki

    Rafiki New Member

    The Canadian Clinical Case Definition is summarized as follows:


    There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen.

    A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind.

    Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.


    Unrefreshing sleep or poor sleep quality; rhythm disturbance.

    3. PAIN:

    Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness.

    Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature.

    Often, there are significant headaches of new type, pattern, or severity. [Editor’s note: neuropathic pain is a common symptom and should be added here as well.]


    Two or more of the following difficulties should be present:

    confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.



    Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.


    loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.


    tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

    6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier.

    The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.

    This summary is paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275. A few edits and suggestions were added by the M.E. Society of America. As we have noted, the M.E. Society of America holds that this is the best case definition so far, although it is not perfect.

    Listing more cardiac and neurological symptoms (e.g., chest pain, left-side chest aches, tachycardia, and neuropathy pain), and emphasizing muscle weakness and faintness instead of “fatigue,” would have more accurately represented the symptomatology and vastly improved the criteria.

    Nevertheless, the Canadian Consensus Panel clinical case definition more accurately represents the experience and manifestations of the disease than other current case definitions.
  5. Rafiki

    Rafiki New Member

    There is much debate as to whether or not the illness called CFS is the same as the illness called ME. If it is not, then what it actually is has never really been defined by anyone and it becomes a meaningless term or "wastebasket" diagnosis used to describe a number of poorly understood fatiguing illnesses.

    I think you are probably asking if it seems that you have the illness ME aka, by some, as CFS.

    I hope the info. I posted above helps you to figure this out. My concern for you would be that you have something else which could, and should, be treated differently. The possibilities are myriad.

    Many people here are very knowledgeable re what else might be causing your symptoms as we have many gut issues among us :~)

    Peace out,

    [This Message was Edited on 07/15/2008]
  6. justlooking

    justlooking New Member

    Thank you Rafiki for that diagnostic criteria. I've not seen that one, only the one for CFS defined by the CDC. I have been diagnosed with CFS and FM, as well as a chronic headache disorder but when I just read the M.E. criteria I just went WOW that is EXACTLY me. Best set of criteria to explain how I feel and what I go through. Could you please post that in its own new post for people, unless it is posted somewhere else and I've missed it, because I really think that should be posted for all to see.

  7. Rafiki

    Rafiki New Member

    I just bumped a thread, started by HappyCanuk, which begins with this criteria.

    It is quite stunning to see that exactly what ails you is well understood and explained, isn't it. Makes a person feel a little better.

    You can google it and find the 30 page document if you want to feel REALLY understood. There is a movement in the US and Europe to adopt the Canadian Definition as it is the most clear, accurate and useful definition there is.

    Glad I could introduce you to something so helpful that was Made In Canada :~)

    Would you like Maple syrup with that?

    Peace to you,
  8. DADI

    DADI New Member

    This desease is so complex and so different for each of us...


  9. sascha

    sascha Member

    get a CDSA done (see Genova online for inf.). CDSA is Comprehensive Diagnostic Stool Analysis. you would confer by phone with doctor on results and course of treatment. you might get tremendous help from this. i'm about to do the test.

    it doesn't sound like cfids/me that you have, which is a good thing. digestive woes are no fun, and you can find ways through diet and supplements to keep control of the situation. first step would be the CDSA. best of luck, sascha
  10. justlooking

    justlooking New Member

    thank you!

    sure I love maple syrup. yum!


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