New Poll: CFIDS Survivors; Main Symptoms

Discussion in 'Fibromyalgia Main Forum' started by Jillian40, Sep 10, 2002.

  1. Jillian40

    Jillian40 New Member

    Hello -

    I don't have this condition, but would very much like to understand it. Would like to know what you guys endure on a daily basis. I do have one dear friend named Judi with this.

    Could you list your predominant symptoms and also the Viruses, Bacteria, Micro-organisms, etc that you have been diagnosed with. What are the doctors able to treat some of this with?

    My heart goes out to everyone of you,

    <<<<<HUGS>>>>>> Jillian
  2. Jillian40

    Jillian40 New Member

    Hello -

    I don't have this condition, but would very much like to understand it. Would like to know what you guys endure on a daily basis. I do have one dear friend named Judi with this.

    Could you list your predominant symptoms and also the Viruses, Bacteria, Micro-organisms, etc that you have been diagnosed with. What are the doctors able to treat some of this with?

    My heart goes out to everyone of you,

    <<<<<HUGS>>>>>> Jillian
  3. Billie

    Billie New Member

    I have CFIDS-

    1. Fatigue
    2. Post-exertional fatigue
    3. Low-grade fever
    4. Poor sleep-sleep apnea
    5. Headaches
    6. Muscle aches
    7. Malaise

    Many others, but those seem to be the ones I have on a regular basis. The others come and go.
  4. Sindy-Uk

    Sindy-Uk New Member

    Extreme physical and mental fatigue
    Dreadful short term memory
    concentration problems
    aching muscles
    Feel dizzy if I stand too long, usually low blood preassure
    hypoglycemia
    Difficulty falling asleep, have bad dreams, weak bladder
    Headaches, dry cough always, low body temperature.

    Dont know which ones are part of cfs and which are not

    Satin
  5. teach6

    teach6 New Member

    These are my major symptoms:

    Fatigue
    Cognitive Dysfunction
    Dysautonomia, including Neurally Mediated Hypotension, poorly regulated body temperature, sensitivity to temperature extremes and changes.

    Barbara

    [This Message was Edited on 09/10/2002]
  6. tired42long

    tired42long New Member

    Hi Jillian,
    Mostly in my case it is a daily feeling of complete exhaustion...like you've done a triathalon. That is the main life-altering problem. Others for me are:

    Brain Drain and difficulty w/concentration
    Severe Headaches (Never had any before)
    Becoming very, very, weak with any "real" activity.
    Sleep difficulty--getting to sleep and STAYING long enough to get to deep sleep.
    For me..not always a big problem with others, lots of heart irregularity that makes me dizzy and nauseous.
    Arthritic-like finger joints.
    Sporatic pain in upper back and neck, esp. right side.

    Yep, those are the big life changing ones...but many other very bothersome things go along with.
  7. dolsgirl

    dolsgirl New Member

    Fatigue
    Cognitive Dysfunction
    Visual disturbances
    Extreme environmental/chemical sensitivities
    Over sensitivity to heat and cold
    Hormonal imbalances, have had a hysterectomy & take estrogen.
    Rashes/hives
  8. sybil

    sybil New Member

    sleep problems
    extreme fatigue after mild activity
    lack of concentration
    memory problems
    weakness

    sybilxxx
  9. Sweetmia

    Sweetmia New Member

    Main Symptoms are

    1. Fatigue
    2. Weakness in legs
    3. Dizziness, imbalance
    4. Difficulty ready--vision disturbances
    5. confusion
    6. Food sensitivities
    7. Environmental sensitivities
    8. Sleep disturbance
    9. Hormonal problems
    10.Have high anitbodies to epstein-barr virus--had mono in my twenties, again in my 30's.
    I have had CFS for more than 20 years--just diagnosed a few months ago--I thought for years that allergies made me feel this way!!! I have found relief with Provigil for daytime sleepiness; Remeron, 1/4 tab for sleep; hormone replacement--thyroid, estrogen, progesterone; vitamins;
    high protein diet; exercise--I always ran 5 miles daily--now I run/walk 5 miles daily. I am too stubborn to give my running up--I run even though I don't feel great. I am not giving into this disease.
  10. MarilynK

    MarilynK New Member

    Mine are,

    Stifness in all joints

    Burning Pain all over,i feel the most in hands and hips,hard time walking

    drained and dizzy,sometimes fall

    Over sensetive to smell, ligth, sounds.And medecine.

    Sore throt , dry goff

    Bad short term memory

    Psoriasis

    Pabably more but cant remember,fibrofog todayto.

    God Bless
    Marilyn

  11. Dawnt

    Dawnt Member

    1. Fatigue
    2. Post-exertional fatigue
    3. Low-grade fever
    5. Headaches
    6. Muscle aches
    7. Malaise
    8. Short term memory loss, concentration problems
    9. Low Blood Pressure
    10. Hypoglycemia
    11. Over sensitivity to cold
    12. Sleep disturbance
    13. Extreme pain and weakness in legs
    14. Nausea



  12. TeaBisqit

    TeaBisqit Member

    Just about every post above sounds like me. I've had the illness for eleven years. Current main symptoms:
    NMH (Which I fondly call The Fainting Thing)
    Fatigue
    Pain, lots and lots of muscle and joint pain.
    Sound sensitivity, Light Sensitivity
    That lovely spaced out feeling when I don't take any meds, at least none that do that. I do take aciphex for my stomach.
    Currently having thyroid problems and all the symptoms of hypothyroidism, cold hands and feet, have had the low body temperature for years.
    Irregular periods, I'm currently on OrthoTriCyclen, which has fixed that, but I have to stay on it.
    Short term memory loss and confusion alot.

    TeaBisqit
  13. pepper

    pepper New Member

    So few people seem to want to know about or try to understand our illness. My husband and I have lost most of our social circle because of this terrible illness. A few good friends have stuck by us. Judi is lucky to have you.

    My main symptoms most days are:
    - unrelenting debilitating fatigue (when I first experienced it all I could think about was, "I didn't think anyone could be this exhausted and still be alive!)
    - insomnia - without sleeping meds I cannot fall asleep until 6 or 7 am. With them I fall asleep in 3 or 4 hours and awaken off and on all night.
    - pain - varies in location and intensity from day to day and even during the day
    - post-exertional fatigue (I used to teach aerobics after working all day, looking after 2 kids, cooking supper, etc.!)
    - highly sensitive to smells
    - highly sensitive to noise - I scream involuntarily at loud noises
    - memory problems, difficulty making decisions, doing math, all the brain stuff (I used to have a really high IQ - I wouldn't want to take a test now!)
    - I have been HOT, HOT, HOT since the day I got sick almost 10 years ago
    - thyroid problems

    There's more but those are the main symptoms.

    Pepper
  14. marilew

    marilew New Member

    Just about all of the above here, but no hysterectomy....yet
  15. amymb74

    amymb74 New Member

    First 5 years:
    FATIGUE
    Lightheaded
    trouble swallowing
    some chest pain
    (Also had anxiety symptoms at first because I thought I was dying!)

    Past 4 years: All of the above, plus:
    disorientated a lot
    vision problems
    irregular heartbeat
    headaches
    sensitivity to light, sound, smells, heat,cold
    ringing in ears
    neck problems (trouble holding my head up)
    difficulty walking/standing (often feel like the ground moves?!)
    bad memory - sometimes too hard to hold a conversation
    if I try to hold my head still - it sometimes shakes??? Anybody else w/this problem?

    I've never had any positive tests - Been extremely healthy!LOL......AMY
  16. ssMarilyn

    ssMarilyn New Member

    I need some educating here! The symptoms you have all listed are identical to FM, so how do you know which is which and which one you have? I need to know, because I often wonder if I don't have CFS rather than FM.

    Marilyn :)
  17. ssMarilyn

    ssMarilyn New Member

    Bump for someone that can explain this to me!

    Marilyn :)
  18. kadywill

    kadywill New Member

    I was just ablout to ask the same thing! I have Fibro and this all sounds just like what I experience everyday! I hope someone can clear this up!
    Love and health!
    Kady
  19. ssMarilyn

    ssMarilyn New Member

    for Kady and Marilyn!!! Please someone, if you can explain the differences to us, we'd sure be appreciative. Kady will shovel your sidewalk ALL winter long!!

    Marilyn :)
  20. KLynn

    KLynn New Member

    bump for katy and marilyn........lol....just to help...


    ~KLynn