My story - Do I have CFS?

Discussion in 'Fibromyalgia Main Forum' started by kougar, Nov 15, 2002.

  1. kougar

    kougar New Member

    Hi all, I am new to this message board. I would greatly appreciate the insight of other CFS patients or others with a similar experience to mine.

    About 6 months ago, I was struck with a "mysterious illness". It first felt like a flu, but somehow felt a little different. I felt very tired for about a week but it felt like a different type of "tired" than I had ever felt before. This is when I first went to see my family doctor. His first reaction was that I probably had Mono. After about another week, I was not feeling any better, and the Mono test came back negative. To make a long story short, I have now been through a few doctors, and they have run every conceivable test. Not one of them has found anything. The last doctor (an Internal Medicine doctor) has basically told me that I was affected by some sort of virus and that it might take a few months for it to go away.

    Well here I am 6 months + and I am still experiencing many of the symptoms I had been at the start of all this.

    My symptoms include:

    - Mild fatigue on a daily basis
    - Malaise (particularly after exercise)
    - New chronic headaches that tend to come and go every few weeks.
    - Heavy brain fog that usually lasts for a day or two and occurs every few weeks.
    -Irritable bowel ... basically when all my other symptoms appear, this occurs as well.

    I do not have any joint or muscle pain as I understand many CFS patients do.

    One other thing about my symptoms is that they seem to be less severe now than they were even a few months ago which I suppose is a good sign. They are also very up and down.

    So there will be a period of a few weeks where I feel pretty good with all symptoms being very minimal (although I still don't feel 100% "normal") and then a week or so when the symptoms are worse. My illness seems to be very cyclical this way.

    Based on this info... is it fair to say I have CFS?

    Also, I must admit that the last 6 months have been a pretty difficult experience, but I am very much an "A" type personality and I would like to know what the realistic recovery rates for people suffering with CFS are and what has been some of your own experiences with this illness.

    Thank you very much... I appreciate your help.

    Cheers,
    Sebastian
  2. kougar

    kougar New Member

    Hi all, I am new to this message board. I would greatly appreciate the insight of other CFS patients or others with a similar experience to mine.

    About 6 months ago, I was struck with a "mysterious illness". It first felt like a flu, but somehow felt a little different. I felt very tired for about a week but it felt like a different type of "tired" than I had ever felt before. This is when I first went to see my family doctor. His first reaction was that I probably had Mono. After about another week, I was not feeling any better, and the Mono test came back negative. To make a long story short, I have now been through a few doctors, and they have run every conceivable test. Not one of them has found anything. The last doctor (an Internal Medicine doctor) has basically told me that I was affected by some sort of virus and that it might take a few months for it to go away.

    Well here I am 6 months + and I am still experiencing many of the symptoms I had been at the start of all this.

    My symptoms include:

    - Mild fatigue on a daily basis
    - Malaise (particularly after exercise)
    - New chronic headaches that tend to come and go every few weeks.
    - Heavy brain fog that usually lasts for a day or two and occurs every few weeks.
    -Irritable bowel ... basically when all my other symptoms appear, this occurs as well.

    I do not have any joint or muscle pain as I understand many CFS patients do.

    One other thing about my symptoms is that they seem to be less severe now than they were even a few months ago which I suppose is a good sign. They are also very up and down.

    So there will be a period of a few weeks where I feel pretty good with all symptoms being very minimal (although I still don't feel 100% "normal") and then a week or so when the symptoms are worse. My illness seems to be very cyclical this way.

    Based on this info... is it fair to say I have CFS?

    Also, I must admit that the last 6 months have been a pretty difficult experience, but I am very much an "A" type personality and I would like to know what the realistic recovery rates for people suffering with CFS are and what has been some of your own experiences with this illness.

    Thank you very much... I appreciate your help.

    Cheers,
    Sebastian
  3. karen2002

    karen2002 New Member

    Your symptoms are right there...with the CFS.
    I CFS and Fibro. I have those symptoms of CFS, plus the pain, that is more often associated with Fibromyalgia.
    If I may make a suggestion. Find a doctor that specializes in Chronic Fatigue/Fibromyalgia and make an appointment. Research well, and use referrals from the Good Doctors list at this site, support group member referrals. I suggest calling any, that might be promising, and asking how many cfs patients they are currently treating.
    I have been down the blind alley quest of finding a doctor and it doesn't yield results.
    These disorders can wax and wane, and most find that there are triggers that set off flares--when we are at our worst.
    A good, thorough, Doctor will rule out other possible causes for your illness--sounds like you have already had quite a few of the batteries of tests--so you have already made progress. This disorders are usually diagnosed when all else is excluded. I am new to this to..only being diagnosed in mid Sept., and incapacitated for 6 months prior.
    Glad to report in just the short time I have been seeing my Doc, we have already made progress.
    Best wishes to you--an Welcome to the board.
  4. Pat UK

    Pat UK New Member

    You sound as though you may have cfs, I went for quite a number of years without pain and I had mild symptoms. I was led to believe that there was nothing wrong with me. Make sure you get checked over there could be a chance you could make a full recovery if it is caught early. You need to stop being an A type personality and pacing your activities to give your body time to heal.
    best wishes
    Pat
  5. Shirl

    Shirl New Member

    To the board Sebastian, you have already received some sound advice.

    I have Fibro, not CFS. Will let the others give you advice.

    Just stopped to welcome you.

    Do read our 'Home' page, it has some great articles by some of the best doctors on CFS.


    Shalom,Shirl

  6. beans

    beans New Member

    Sounds like CFS . I have had it for at least a dozen years . I tend to lose count the years fade away in a fog.

    As you also I still do not have
    much joint or muscle pain as I understand many CFS patients do.

    An Allergist was one of the first helpful people to me. Still not the cure but a help.

    A Neurologist was very helpful I had a sleep study done.
    Not the cure but a help.
    I am on allergy medicine and oxygen at night and muscle relaxers at night.

    A good nights sleep is very helpful.
    A sleep study helped me find out why I was not sleeping.

    Good regular meals is very helpfull.

    I have had mono at least two times in my life that was documented by a doctor.

    Pace your self.

    No easy solutions. No set conditions, no rules that the illness follows.

    I have spent much money on test and drugs and herbs etc no cure did I find.

    I know people who have been to the best clinic just for CFS you know Dr. Paul Cheney. I know two people who went to Paul Cheney and all he did for them after 3000.00 dollars in testing is say yep you have CFS.That was a few years ago.

    The one person now just pushes her self using Caffeine pills.
    Thats works on some days but it has side effects for me and even though it can perk me up it is destroying other parts of me.

    CFS is not like the common flue or cold you can go to the Doctor he will give you the same medicine he gives every one that season with the same symptoms and they all get better in a few weeks.

    It very complicated.

    Beans



  7. Fibrolady37

    Fibrolady37 New Member

    Hi sebastian,
    Welcome to the board,im sharon d from UK & have had fibro,ibs & Cfs(me another name for it.
    Your list of symptoms describes fibro to a tee but some of mine were slighty different,we dont all have that same symptoms.
    Welcome to a great site with lots of great people who all support each other & give good advice.
    We have good & bad days so becareul ok,listen to your body & do as it says,rest when it tells you to.
    I went shopping for a couple of hours a few days ago & boy did i suffer,i hurt so much & was chronically tired.
    Same happens when i clean my flat but ive got used to it now & im so proud that i do it myself & it means a lot to me to know how much ive done,then i rest.
    I look forward to getting to know you & please feel free to
    post me whenever,good luck & very gentle hugs sharon d UK