For those with CFIDS: How were you diagnosed?

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Oct 23, 2005.

  1. EllenComstock

    EllenComstock New Member

    I sometimes wonder if I also have CFIDS in addition to the FMS (plus other health problems). Not that I am anxious to add to my health problems list, but I do have the sore throats sometimes and I definitely have the fatigue. I know that fatigue is also part of FMS. I sometimes have wondered if FMS and CFIDS are one and the same, except that maybe some of us don't have as much pain as others?

    I think it's confusing. Of course a lot more research needs to be done so we have more answers. But for those who have CFIDS, how were you diagnosed? To have CFIDS, do you have to be so exhausted you can barely function or maybe not at all some days? I'm thinking that there are people here with CFIDS who work, if not full-time.

    With FMS it's a matter of ruling out other health problems and having at least 11 of the 18 tender points and having pain in all four quadrants of the body for at least several months. But what is the criteria for being diagnosed with CFIDS?

    Any answers would be appreciated. Some days I am so exhausted, I really have to push myself to accomplish anything. I still work, but only 23 hours a week. I just work mornings. Thanks.


    LISALOO New Member

    with CFIDS by the FFC.

    This is from the CDC

    Clinically evaluated, unexplained chronic fatigue cases can be classified as chronic fatigue syndrome if the patient meets both the following criteria:

    Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

    The concurrent occurrence of four or more of the following symptoms:
    substantial impairment in short-term memory or concentration;
    sore throat;
    tender lymph nodes;
    muscle pain;
    multi-joint pain without swelling or redness;
    headaches of a new type, pattern, or severity; unrefreshing sleep;
    and post-exertional malaise lasting more than 24 hours.

    These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue.

    I have only CFS and lately am 90% bedbound.
  3. EllenComstock

    EllenComstock New Member

    Thanks for the info. I guess I could have looked up info on CFIDS, but it is great to hear from others who have it. After reading the criteria, unfortunately it does sound like me.

    I'm so sorry to hear that you are 90% bedridden with it. Stories like yours really scare me, but I am learning to take things one day at a time. All I can do is the best I can. I see by your profile that you are so young (I am 46). I love your wedding picture!

    Anyway, thanks for the info. I am going to ask my FMS doctor about CFIDS when I see him in mid-November.

  4. bossco

    bossco New Member

    After a year and a half of having every test done to eliminate any and all other conditions thru blood work, x-rays, ct scan, mri, sleep test, urine, psychologist exam, having my condition worsen as the time went on, being told I was fine.... I went to the cleveland clinic saw a cfs specialist, had a tilt table test, was then diagnosed with cfs. With all records in hand, made the end result much easier to find. Good luck, don't give up or give in....
  5. spmary

    spmary New Member

    Hi Ellen....I hads pneumonia and couldn't seem to get over it. The doc. gave me every test available I think. Nothing showed up. I kept bugging him because I felt so awful. I think he got tired of that and finally just pulled cfids out of the air. I asked what to do about it aand he said ,Nothing, just rest, rest, rest. I didn't believe that so I started reading everything I could find about it.

    I was convinced that was what I had. It seemed I only had a small patch of pneumonia, but felt so terrible. Then
    I found a doctor that believed in Cfids, and he gave me meds. that helped with sleep and depression. I was so thankfull I didn't have any pain, although if you have cfids you also have fibro. This was all in 1992. then a month ago the pain started and has not let up. I take tramadol which helps . And ambien for sleep, thats what they treat first. I have found alot of support on this site and have tried various things that helped the others on here. I have other problems too. the latest is several mini strokes, so walk with a cane now. Sorry this is so long. guess I just got wound up! Good luck, and stay with reading and talking to the doc. and this board. LOve, Mary
  6. dononagin

    dononagin New Member

    I had a really bad bout with Epstein Barr Viris then Mono and never got better.. after a year of swollen lymph nodes and fevers, fatigue etc. the doctor decided I had CFS.. Well I still had all these other unexplained symtoms and have been tested for so many different things.. tested for lupus 5 or 6 times.. for aids, even a complete body scan for cancer.. you name it! Some of the doctors I have seen think the CFS diagnosis is a crock and they must be missing something..

    After 10 years of repeated testing I was recently referred to a rhumie in Fresno that confirmed the original diagnosis of CFS and added Fibro to it.. I have other health issues that confuse things with my tests.. My Rhumie said CFS and FIBRO frequently overlap .. when he concluded my exam he said give me your top three complaints.. I said Fatigue, pain and memory.. Thus I was diagnosed CFS/Fibro.. If I had said pain first it would have been the other way around..

    I know when you see that there are people bed bound with this it is pretty scary.. I was on complete bed rest for the entire first year.

    I currently work 40 -50 hours a week. I'm the director of Sales for a Major Restaurant. There are times it is everything I can do to get to work.. but I do. And I have a very successful career.

    I started working here part time when I was released to go back to work.. I would work a day and sleep two.. Eventually I worked back up to full time. I won't pretend it's easy.. there are days I go to work and come home and go to bed.. I deal daily with pain.. in the winter my Raynaulds gets so bad it's all I can do to type..I don't know if I will be able to do this forever, but for now I think it keeps me going..

    I'm afraid if I didn't work it would be really easy to succumb to this disorder.. I know that when I'm working it's easier to keep my mind occupied and not dwell on my aches and pains so much.. there are things I do differently.. I gave up my job as Banquet Manager because the long hours were doing me in.. and I can't be on my feet that many hours anymore.. Now my job is probably 70% in the office.. I have to write everything down.. my memory is horrible and that is really scary.. It's hard for me to stay focused and I've had to learn to try and work more efficiently so I can accomplish more when I feel good..

    I know Ellen it's hard to push your self to work sometimes but I think it keeps me from giving up..

    Hope you have a great day Ellen..
  7. EllenComstock

    EllenComstock New Member

    to everyone who responded to my post. I will talk to my doctor when I see him on November 15. I've been out with the flu the past few days so I am behind in my messages.

    Thanks again.


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