Discussion in 'Fibromyalgia Main Forum' started by loto, Aug 11, 2009.

  1. loto

    loto Member

    Hi everybody.
    I know I have Fibromyalgia. I was diagnosed with it about 2 years ago. What I wonder is if I may have Chronic Fatigue Syndrome, also. I am so tired all the time. And, I'm so tired of being tired. Early mornings are my most productive times, believe it or not. But then by about 10AM, I just get so sleepy and tired.
    SO, how is it diagnosed? Should I go to my primary doctor, and he'll diagnose it?? I just need some advice on how to find out. I've read that Provigil is prescribed for it, also. Has anyone tried that? Does it work for you? I have so many questions!
  2. TigerLilea

    TigerLilea Active Member

    First of all you need to read the Canadian Definition and see if you fit the criteria. If so, your doctor needs to run tests to rule out all other illnesses (ie cancer, Lupus, MS, infections, etc.). Only then can you be diagnosed with ME/CFS after all other illnesses have been discounted.
  3. isiselixir

    isiselixir New Member

    CFS is a diagnosis of exclusion, as mentioned. So you will need to rule out any other potential causes for your fatigue first. The type of tired you have with CFS is not like any other type of tired. I understand FM can wipe you out too but I believe the two types of tired are different, unless you have both illnesses. My primary doctor diagnosed me after doing blood work to rule everything else out and then referred me to a rheumy (although that was pointless because I don't have FM). As far as provigil is concerned, yes I do take it. It helps me to stay awake so I am not sleeping 24 hours a day. It does not give me energy or anything like that, it simply allows me to keep my eyes open. More mental than physical is the way I would describe it. Anyways, good luck to you in figuring out the cause of your fatigue.
  4. jasminetee

    jasminetee Member

    Hi Lori,

    I'm glad Tigerlilea brought up the Canadian Definition for ME/CFS. It really is the best out there and many of us have tried to get the US to adopt it but so far to no avail. I thought I'd post it here as I like to see it myself from time to time. From your above post you don't sound like a classic case of CFS to me. You may find that you can tolerate thyroid meds and if you see the right kind of doctor/practitioner for that you may be able to alleviate your fatigue.

    Clinical Working Case Definition of ME/CFS

    A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.

    1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

    2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period ­usually 24 hours or longer.

    3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

    4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.

    5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances - ­eg., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory - ­eg., photophobia and hypersensitivity to noise ­and/or emotional overload, which may lead to "crash"2 periods and/or anxiety.

    6. At Least One Symptom from Two of the Following Categories:
    a. Autonomic Manifestations: orthostatic intolerance­neurally me diated hypotenstion (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.
    b. Neuroendocrine Manifestations: loss of thermostatic stability subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change - ­anorexia or abnormal appetite; loss of adaptability and tolerance for stress, worsening of symptoms with stress and a slow recovery.
    c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

    7. The illness persists for at least six months. It usually has a distinct onset,** although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.

    To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 and 6. (I DISAGREE WITH THAT COMPLETELY. I HAVE ALL OF THOSE SYMPTOMS AND I KNOW MANY OTHERS WITH ME/CFS DO AS WELL.) The disturbances tend to form symptom clusters that may fluctuate and change over time. Children often have numerous prominent symptoms but their order of severity tends to vary from day to day.

    * There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.

    ** Some patients have been unhealthy for other reasons prior to the onset of ME/CFS and lack detectable triggers at onset and/or have more gradual or insidious onset.

    Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison's disease, Cushing's Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.
    Exclusion of other diagnoses, which cannot be reasonably excluded by the patient's history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.
    Co-Morbid Entities:

    Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud's Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto's thyroiditis, Sicca Syndrome, etc.
    Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be "overlap syndromes."
    Idiopathic Chronic Fatigue:

    If the patient has unexplained prolonged fatigue (6 months or more) but has insufficient symptoms to meet the criteria for ME/CFS, it should be classified as idiopathic chronic fatigue.
    [This Message was Edited on 08/12/2009]

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