I wander if I have CFS, if not what

Discussion in 'Fibromyalgia Main Forum' started by duane, Mar 4, 2003.

  1. duane

    duane New Member

    I accidently put this in the wrong place and it should have been a new topic.

    I've had these weird flu symptoms since at least September where I just feel crummy all the time. For a long time my normal temperature was like 97.4 then lately since September it's been like between 99 and 100. I keep going to the doctor and they have given me antibiotics a few times, but I just can't seem to get better.

    I have diabetes but the doctor has gotten than under control and I still feel terrible. My energy level has about totally dissapeared. I can get the enery up to do something, then I really pay for it by feeling worse.

    I've bee warned at work about taking too many days off.

    It's really been affecting me for the last few months (since around September). I'm a violinist in one of the symphony orchestras here in the Phoenix area. Up until about 6 months ago I could practice 2 1/2 to 3 hours, no problem. It requires that much practice to play in the orchestra, but because I love to play, it was nothing to play that long. It was fun to me. As of late I can play 1 piece of music on my violin and I feel like I've been lifting too many weights or something. I'm very disenheartened because I've had to discontinue my volin studies and I hope to just temporarily take a leave of absence from the orchestra.

    Losing the one thing I like to really do in life is bad enough, but I'm also concerned about now not being able to provide for my family.

    I had no clue what Chronic Fatigue Syndrome was until today.

    Also my muscles get very sore and my joints get achy (different joints, just like the list of symptoms describe). We had a 3 hour rehearsal and by the time it was over I was hurting all over.

    The doctor has ruled out lupus and (valley fever), a local disorder in the desert.

    My wife asked me today to read on the internet about CFS. I thought she was saying product fatigue syndrome, but nothing came up but about CFS. I read about the symptoms and I thought "Oh, my God, that describes me". I also read stories about people who have CFS and I could relate so well. I just had a short term disability claim turned down because the doctor can't say what the diagnosis is.

    And, by the way, I also have trouble remembering things on a continuous basis like I'll be in a room and think of something I need to do and go into another room and I can't remember what I went in there for. This happens a few times a day, not once in a while. I'll go to the store and then can't remember what I went there for. I have to make lists for just a few things. I'll forget what key the music I am playing is in if I have enough energy to play.

    I just had to vent; because frankly; I'm feeling desperate.

  2. Echos

    Echos New Member

    Hello Duane and Welcome. I'm also here in Phoenix and must say it's nice to have you here. You do have some symptoms that would fall into the catagory of cfs, but it could also be Fibromyalgia. Has your doctor done extensive lab work to rule out all other possibilities? Do you ever have a sore throat, swollen lymph glands in the neck or armpit area, headaches of a different type, cognitive, short term memory? The list can go on and on. This is why it's so important for your doctor to rule out all other possibilities. Without a diagnosis and documentation, dissability is next to impossible. If you have a good doctor, bring up your concerns to him or her and perhaps then your problem can be narrowed down. Feel free to e-mail me anytime you like. I and other's might be able to answer some questions, but cannot take the place of your physician. Let us know what your doctor finds out and come around anytime.
    SWAK's,
    Echos
  3. layinglow

    layinglow New Member

    Yes you are right, you have many symptoms common to these disorders. Both FM and CFS are diagnosed using various criteria, which you can find at this site, and an exclusion of all other possibilities.

    Be aware that a vast majority of the medical community, does not hold the opinion that these are actual diseases, since there is no definitive test.

    My advice would be to see a doctor who specializes in chronic fatigue, and fibromyalgia. There is a good Dr.s list, listed by cities and states on this site as well. Since you do live in a large community that should ease your search somewhat. If I could suggest, when you call prior to making an appointment with any doc, confirm that they do indeed treat these disorders. Those who are disbelieving or not involved in the treatment of these disorders are usually clueless or refuse to treat.
    Best wishes,
    LL
  4. Mikie

    Mikie Moderator

    I agree that you need to see a doc who is knowledgeable about CFS. He or she will run a whole slew of tests to rule out other things. A low-grade temp is one of the symptoms of CFS. It may signal that you have a chronic stealth infection going on and you may need to address that. These infections can be bacterial, viral, and/or fungal.

    Good luck to you. The good news is that the recovery rate for CFS is much higher if you can get treatment early in the game rather than later like me.

    Love, Mikie
  5. Tanis

    Tanis New Member

    All familiar things. I live in the UK and we are very unbelieving where this sort of thing is concerned. Luckily I have a decent doctor and after emptying me of blood several times over and eliminating everything else he officially diagnosed me which helps alot with benefit/qualifying for some helpful disability charities who help alot with info and contacts etc. Iv pretty much always felt like this and my records show it was back to when I was with another doctor. But since im a young adult (22) he fobbed me off with "growing pains" for 6-7 years. So now im in a complete mess but getting better at dealing with it. Hopefully il wake up one day and be dandy ;) (we can but dream).

    A good doctor is the key and always remember that you pay for the treatment be it directly or via taxes here so demand that he finds out what is or isnt wrong since its his job to do so dont let them fob you off. If you do have CFS then waiting doesnt help at all.


    Anyways I hope you dont have it you will be far better off with a hidden virral infection so just cross yer fingers ;) .
  6. kydream27

    kydream27 New Member

    my husband went thru similar thing....do some research and find a LYME LITERATE DR....one who will treat with antibiotics even if you dont test positive....remember: antibiotics may make one feel worse as it kills off--but the LYME LITERATE DR may suggest some type of anti anxiety med. get well. SOON.