Can it be CFS and never a Fever?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Feb 24, 2006.

  1. greatgran

    greatgran Member

    Can you have CFS but never have or had a fever?

    Well, I have had two doctors tell me they think its CFS but I have never had a fever, unless it was in the beginning when I was to sick to go to the doctor..

    There are so many times I feel like I have a fever with the chills, aches and flu like symptoms but when I take it, it is always below normal..So just wondering what is going on here..

    My doc's office finally called and said my appointment with a new rheumy was not until June..Can't believe it takes so long for an appointment..But its been five years so a few more months shouldn't matter..

    I am so sick and tired of being sick and tired as I am sure so are a lot of you...

    How did you all get a definite Dx and by what kind of doctor?

    God Bless,
    greatgran








    [This Message was Edited on 02/24/2006]
  2. Lolalee

    Lolalee New Member

    It sounds like you are at the beginning stages of getting a diagnosis. I can be very frustrating in the beginning and it is a shame that you have to wait so long to see a Rheumy.

    I got a definite DX from a Rheumatologist for FMS. I got a definite DX for CFIDS from an Internist who specializes in CFIDS, FMS, AIDS, LUPUS and other autoimmune disorders.

    I have CFIDS and my low-grade fever comes and goes..just like the sore throat.

    A word of advice ....make a list of all your symptoms and any questions you might have. I have a difficult time communicating and remembering and my mind goes blank when I get to see the doctor. You might not have this problem, but if you do, it helps to have everything written down.

    The other thing I find that helps is I never wear makeup and I wear simple clothes..nothing too dressy. Before I started doing this, I once had a doctor tell me that when he saw me in the waiting room he thought I was a Medical Sales Rep. because I looked so good.

    Good luck, Lolalee
  3. ilovecats94

    ilovecats94 New Member

    I got my FMS dx from PT and a pain specialist and my family doc. I didn't even know what FMS was back in 1996. lol

    I also run a lower than normal temp, like 97.2 or something like that, so when I have 99, I'm sick. I never drink hot drinks, only cold ones, so you know when I have a fever, I'm ill.

    I don't get much in chills or flu like symptoms, just pain and horrible fatigue. They are equally as bad, I feel. I really can't say which is worse.

    I surely hope you get a dx soon on this.

    Matt made an appointment for a dermatologist and the first appointment is in August. :(

    Hugs,
    Faye
  4. CinCA

    CinCA New Member

    Your post describes me to a "T"...I would never, ever get a fever, despite obviously getting sick. This was true even when I had a severe case of mono in college, subsequent tonsillitis, bronchitis, etc., colds, flus, whatever. If my temp. got to 99 or even 100 I felt like I was dying. My core body temp. has always been low, too...about a degree lower than the 98.6 "normal".

    I asked my naturopathic doctor about this, and he said not running a fever isn't good and indicates your immune system is not as robust in fending off viruses, bacteria, etc. Interestingly, since I've been doing detox and other homeopathic treatments with him for my CFS, allergies, etc., I HAVE started getting fevers the few times I got sick. I even got a 103.5 degree one this past November when I contracted a case of the flu ("flu" flu, not stomach flu). I felt beyond awful and stayed in bed the entire day, but the next day, I actually felt pretty good and strangely refreshed, as weird as that may sound. My doctor was not worried at all (the fever broke quickly) and actually was quite impressed my body could build such a fever. Even though I knew I had the flu, I got over all but the low appetite in a day or two, and I can tell my immune system has gotten much more robust as I (knock on wood) haven't been sick since even though I've been exposed to all sorts of stuff this winter.

    Personally, I got my dx. when I asked another naturopath point blank if I had CFS. She worked with my main doctor in doing various more clinical tests to measure toxin, antioxidant levels, liver function/detox ability, etc. Pretty much all my antioxidants and glutathione were bottomed out, my adrenals were shot, and my body overloaded with toxins, even evidence of mercury and lead, for which I did a few rounds of DMPS chelation. I also did some IV glutathione 'cause my levels were so low my doc. couldn't believe I was functioning at all, and took various supplements to raise other thing. I've been trying to eat more fruits & veggies, too...as many organics as I can get.

    It's been a slow process, and nothing seemed like the "magic bullet", but looking back over the past 9 mo., I can see my health has made a dramatic progression upwards. Don't get me wrong...I am by no means 100% and still have plenty of "bad" days, but I am so very much better than I was.

    Again, I went the more nontraditional route after getting horrible treatment (and getting so much sicker) seeing MDs in my area, but it seems many people get dx'd from rheumies or even neurologists in some cases. Not sure if it's something a PCP could do, as CFS and FM seem to be getting more widely recognized. There also are the FFC centers many people post about...maybe one is in your area? Don't know much about insurance coverage, though, and all the tests they run are surely expensive. Something to look into.

    Best of luck! Honestly, if you feel like you have CFS, I would take what steps you can to address it regardless (and do "natural" stuff, or just take better care of your body/get plenty of rest, if you aren't in a state to get prescription drugs). I hope you find answers or at least something that works for you...this board is a great resource.

    Good luck!
    C.
  5. greatgran

    greatgran Member

    Thank each of you for your replies..
    As far as doctors go we do not have any here that know or even want to know about fibro and cfs..

    First I was dx with anxiety/depression but then when my labs came back with a high positive ANA and C-reactive protein they knew something was out of wack and sent me to a rheumy..He did no labs spent a few minutes with me and said osteoarthritis, well my doc here thought lupus and wasn't satisfied with his answer but said he is the specialist..That is when my doc here told me he thought I had fibro but I didn't have the pain or tender points so many have with fibro but did have the fatigue so that is how I got the dx of CFS..also the positive
    EBV..

    Then from there he had me see a cardio.. endog. and a neuro..with each had a different dx.with
    abnormal labs nothing serious and that puzzled my doc even more..So he just shakes his head and says we will treat the symptoms..

    It seems for the past 5 years I have just been going in circles and then one day I decided to go back to my doc and say I have had enough I have got to know what I have so I can deal with it..That is when he said lets try another rheumy..So I have started the circle all over again..

    He did mention once that it would be good if I ran a fever or sweat..He said the way to kill a virus is to sweat it out of you...

    I don't seem to have the pain or tender points that you speak of with fibro..My pain is deep in the bone and wide spread muscle pain, no swollen joint or joint pain..

    My symptoms are mostly the aches, flu like feeling, blury vision, sinus and allergy problems, fatigue, anxiety. depression and so many others that vary from one day to the next..I have gone from 100 per cent functional to about 30..and have to have my rest..Rest seems to be the only thing that helps me..Haven't found a med or supplement yet that seems to make a difference except for my xanax and guess they just help me tolerate this misery...

    Thank you so much I needed to vent and I won't be satisfied until I know for sure...

    God Bless,
    phyl
  6. Rosiebud

    Rosiebud New Member

    I've had CFS for 20 years now, diagnosed end 94 - I DONT get fevers, they're not a pre-requisite for diagnosing or having CFS.

    I hope you get on okay with the rheumy, it's always better when you get a diagnosis, then you can start to move forward.

    love
    Rosie