CFIDS AND FIBRO, IS IT ONE IN THE SAME?

Discussion in 'Fibromyalgia Main Forum' started by toots2, Oct 21, 2002.

  1. toots2

    toots2 New Member

    This has probably been discussed but I am asking anyway. Some I have talked to think Chronic Fatigue Syndrome and Fibromyalgia present the same symptoms. From what I have read, CFIDS is much more involved and debilitating too. Although I am tired and often fatigued, it is not an everyday thing and not overwhelming. What is it with CFS that makes it unique? Toots
  2. toots2

    toots2 New Member

    This has probably been discussed but I am asking anyway. Some I have talked to think Chronic Fatigue Syndrome and Fibromyalgia present the same symptoms. From what I have read, CFIDS is much more involved and debilitating too. Although I am tired and often fatigued, it is not an everyday thing and not overwhelming. What is it with CFS that makes it unique? Toots
  3. allhart

    allhart New Member

    no there not the same but alot of us have both ,


    CFIDS Symptoms

    The nonspecific nature of the name CFIDS is appropriate because while there are many symptoms, disabling fatigue and exhaustion are the most prominent and consistent. However, fatigue, probably the most universal symptom, is the most severe symptom in only half of the patients. The rest have either headaches, muscle pain, joint pain, visual disturbances, emotional changes, memory loss, confusion, lymph node pain, or abdominal pain as the most severe symptom. Individual symptoms may vary in intensity, but the pattern of symptoms remains remarkably constant. These symptoms can be completely disabling and may persist for years, or they may be minor to the degree of being no more than a nuisance.

    In general, the physical examination shows only subtle abnormalities, such as throat inflammation or muscle and lymph node tenderness. It is truly remarkable that a patient can feel so bad yet look relatively well. The routine laboratory evaluation, like the physical examination, shows only minimal, if any, abnormalities. Although sophisticated laboratory testing may reveal abnormal results, they are difficult for most physicians to interpret and have been largely ignored. The combination of numerous severe somatic complaints and only minor abnormalities on physical exam and routine laboratory testing is the reason many physicians have dismissed this illness as hypochondriasis. In the past fifty years, the emphasis in medicine has been to divide illnesses into categories by the nature of the symptoms. Therefore, a joint specialist would see CFIDS as a form of arthritis, a psychiatrist would see it as mental illness, and an allergist would see it as a manifestation of allergies. It is ironic that in this day of specialists, the generalists have been the only group of physicians able to recognize the spectrum of symptoms in CFIDS as a specific syndrome. But in our era of technology, it is rare for specialists to listen to generalists.

    And specialists have been unable to make much progress in studying this illness, primarily because of the lack of "disease" in the organs in which they specialize. That is to say, although the muscles hurt, muscle biopsies are normal or show minimal changes only. Although there are headaches, CT scans of the brain are normal. Specialists are interested in diseases originating in their area of specialty. In these days of specialty medicine, a patient with CFIDS might see more than ten different specialists, and none will be able to find the cause of the complaints. In CFIDS, whatever causes the symptoms is outside of the limited specialties. We are witnessing a disease so fundamental in its origin that it affects all body systems but causes little damage.

    Following is a list of the myriad symptoms seen in CFIDS, including a rough estimate of the percentage of patients who would have each symptom. Those symptoms that cause patients the greatest discomfort are asterisked (*).



    Fatigue or exhaustion 95 % *
    Headache 90 % *
    Malaise 80 % *
    Short-term memory loss 80 % *
    Muscle pain 75 % *
    Difficulty concentrating 70 % *
    Joint pain 65 % *
    Depression 65 % *
    Abdominal pain 60 % *
    Lymph node pain 50 % *
    Sore throat 50 % *
    Lack of restful sleep 90 % *
    Muscle weakness 30 %
    Bitter or metallic taste 25 %
    Balance disturbance 30 %
    Diarrhea 50 %
    Constipation 40 %
    Bloating 60 %
    Panic attacks 30 %
    Eye pain 30 %
    Scratchiness in eyes 60 %
    Blurring of vision 80 %
    Double vision 10 %
    Sensitivity to bright lights 80 %
    Numbness and/or tingling in extremities 60 %
    Fainting spells 40 %
    Light-headedness 75 %
    Dizziness 30 %
    Clumsiness 30 %
    Insomnia 65 %
    Fever or sensation of fever 85 %
    Chills 30 %
    Night sweats 50 %
    Weight gain 40 %
    Allergies 60 %
    Chemical sensitivities 25 %
    Palpitations 55 %
    Shortness of breath 30 %
    Flushing rash of the face and cheeks 40 %
    Swelling of the extremities or eyelids 20 %
    Burning on urination 20 %
    Sexual dysfunction 20 %
    Hair loss 20 %

    A list of CFIDS symptoms is misleading. At first glance it appears that almost every symptom possible is part of the list. This is another reason many physicians have not accepted the reality of CFIDS-there are simply too many symptoms. But a patient relating these symptoms does not list them in a random manner. They fit a precise pattern that is nearly identical from one patient to the next. The pattern of symptoms is so reproducible in the usual case that patients are able to diagnose CFIDS in others in an instant.



    Below is a description of fibromyalgia syndrome (FMS), but because of its substantial symptom overlap with chronic fatigue syndrome (CFS), it can be viewed as applying to chronic fatigue syndrome patients as well.
    WHAT IS FIBROMYALGIA SYNDROME?

    FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons--the fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research later proved that inflammation did not exist.

    Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with fibromyalgia, but it shows up in people of all ages.

    To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state and this is why several experts in the field of FMS and CFS believe that these two syndromes are one and the same.
    (Back to top)

    SYMPTOMS AND ASSOCIATED SYNDROMES

    Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, burning, throbbing, shooting and stabbing. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.

    Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating.

    Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that fibromyalgia syndrome patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it. In most cases, a physician doesn't have to order expensive sleep lab tests to determine if you have disturbed sleep. If you wake up feeling as though you have just been run over by a Mack truck--what doctors refer to as unrefreshed sleep--it is reasonable for your physician to assume that you have a sleep disorder. It should be noted that most patients diagnosed with chronic fatigue syndrome have the same alpha-EEG sleep pattern and some fibromyalgia-diagnosed patients have been found to have other sleep disorders, such as sleep myoclonus or PLMS (nighttime jerking of the arms and legs), restless leg syndrome and bruxism (teeth grinding). The sleep pattern for clinically depressed patients is distinctly different from that found in FMS or CFS.

    Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas and nausea represent symptoms frequently found in roughly 40% to 70% of fibromyalgia patients.

    Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 50% of fibromyalgia patients and can pose as a major problem in coping for this patient group.

    Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJD, causes tremendous face and head pain in one quarter of FMS patients. However, a 1997 report indicates that as many as 90% of fibromyalgia patients may have jaw and facial tenderness that could produce, at least intermittently, symptoms of TMJD. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.

    Multiple Chemical Sensitivity Syndrome - Sensitivities to odors, noise, bright lights, medications and various foods is common in roughly 50% of FMS or CFS patients.

    Other common symptoms - Painful menstrual periods (dysmenorrhea), chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

    Aggravating factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.


    [This Message was Edited on 10/21/2002]
  4. klutzo

    klutzo New Member

    Are you a reader? If so, get ahold of a copy of the book "Osler's Web". It is the definitive work on CFIDS, and after reading it, you will know they are not the same. Don't be put off by how long it is. Though it is non-fiction, it is written like a good mystery story and will hold your interest.
    I used to run an FS support group and when CFIDS patients started coming, I asked a CFIDS support group leader from another state what I should read to learn about it, and she recommended the book. It really opened up my eyes. I started sending the CFIDS people to a group just for them in a nearby city, because I felt some of the advice I gave to FS patients would not help them, and would probably make them worse.
    Our local Arthritis Foundation Program Director told me that the more she reads about the two illnesses, the more she can't understand why they were ever lumped together in the first place.
    Klutzo
  5. Vamp

    Vamp New Member

    In Minneapolis, Minnesota they consider it 2 separate but similar in symptons type illnesses. It definately was the CFIDS that dropped me mostly bedridden within a month or so
    and now I KNOW I had a sleep disorder since childhood, which when the CFS hit - took and blew the sleep disorder to MAX - Also I know now I had Fibro some time before the CFIDS.
    Vamp
  6. Mikie

    Mikie Moderator

    No one, at this point, can prove either way. There is a lot of overlap of symptoms, but there are also some differences. This doesn't mean that they are not one and the same. I think most research is now looking at a whole bunch of illnesses instead of just focusing on one. Some of the other illnesses which are being looked at as potentially being related to CFS and FMS are MS, ALS, Diabetes, Lupus, Alzheimers, Parkinsons, ADHD, Anorexia and probably a lot more I haven't mentioned here. All seem to have problems in the brain and central nervous system in common which affects the body in different ways.

    Whether CFS and FMS are one and the same may be a moot question when research finally answers the underlying cause(s).

    We are all so different, it is impossible to generalize about what helps us and what hurts us. There are people with CFS who have good days and can exercise and those for whom this would be impossible. There are people with FMS who can exercise fairly vigorously and those who would have to go to bed and take pain meds if they do more than just the basic stretches and flexes.

    It's the same with other treatments as well. What makes this message board so valuable is that we can come here and learn what is helping others and see if we can apply that to ourselves. If not, we can try something else. Another benefit is that we can learn some of the side effects of various treatments which our docs rarely mention to us. All of us have to tailor our treatments to our individual selves.

    I believe that the most important thing is that the members here are like family. We are the only ones who truly know how it feels to have these illnesses and we are here to support one another. I owe soooooo much to the kindness and caring of our members and I attribute my healing to what I have learned here.

    Love, Mikie
  7. sean

    sean New Member

    you may be right, same condition, different symptoms. research is being done into not just these two conditions, but others with a similar pattern being one. Evidence is looking strongly towards this being the case. Until that time, I guess no one can really answer yes or no to the question. There is no strong scientific evidence to suggest that these two conditions are without doubt seperate. People can only say what they believe in there own opinion is the case. My feeling is that it's probably some mycoplasma, or candida or the like, that severly suppresses the immune system, and in the case of fm, causes neurological problems.