help getting diagnosis - please

Discussion in 'Fibromyalgia Main Forum' started by ohsotired, May 29, 2003.

  1. ohsotired

    ohsotired New Member

    I recently read about CFS and began taking a deeper look into some "episodes" I was having and realized that there is a definate correlation. I believe I have had CFS for at least 2.5 years and have in fact been to the same dr. 6 times for unexplained sore throat, swollen lymph nodes, exhaustion, shoulder pain, general achiness, muscle fatigue, insomnia and numbness in my hands. I went today with my amunition in a folder - the symptoms and my timelines. He said I may be correct, but was going to treat me with Augmentin for the throat (although he didn't do a throat swab to see if it was viral or bacterial), Paxil for (well I am not sure, but he said he could see I had stress in my life), an x-ray for the arm numbness, ambien for the insomnia and look into a massage therapist for the shoulder pain, but told me that he didn't believe these symptoms were related to one another.

    I have (in the past three hours) changed my physician and made an appointment with another. How did you all convince your dr to even consider CFS to do a thorough exam. Oh - 2 years ago this same dr. kept testing me for mono and Epstein-Barr, but came up negative several times. Any suggestions, the symptoms are beginning to affect every part of my life. I have read so many of your posts and they really hit home for me.

    Please help!
  2. sb439

    sb439 New Member

    what you describe sounds like CFIDS, but keep in mind CFS or CFIDS is a 'syndrome', and that many people who have 'it' have actually different, if overlapping, clusters of symptoms and hence need different treatments.

    The thing you should seriously consider is seeing a generally recognized specialist for CFIDS (but not a psychiatrist!) This way you will have relevant blood tests (and other tests) done, and you can get a proper diagnosis AND PROPER TREATMENT. You don't say which country you're in, or which state, this would help to make suggestions for specialists.

    In the meantime, to keep you from getting worse and enhancing chances of getting better you may want to consider
    (1) first and foremost cut out ALL stress in your life, at least for the moment
    (2) take vitamin C, E, B-complex, perhaps vitamin B12 in addition, and magnesium in reasonably large doses, if you have cognitive problems, also Co-enzyme Q10.
    (3) cut out all sugar in your diet. Experiment with temporally cutting out all gluten; all dairy products, if either makes you feel better, stick to it.
    (4) consider whether you have sources of toxins in your house, workplace (toxins from carpets, new furniture, mold, etc.) or mouth (amalgam fillings).

    Others on the board will have more suggestions.
    All the best,
    Susanne
  3. ForeverFlaring

    ForeverFlaring New Member

    I would explain all of my symptoms to him. Tell him you have tried to get an explanation of what is happening in the past, but there seems to be no explanation. Explain the fatigue to him and how it limits you, and ask him what he thinks it may be, he may want to do some of his own testing to rule out what your prior physican hasn't such as thyroid problems, lyme disease, etc.

    If, on your second visit with him when he has all results of the bloodwork, he does not have an explanation for your symptoms ask him forthright does he think it could be CFS. I know it seems a bit bold, but I know how it feels to be undiagnosed for a very long time and searching for the answers.
  4. ohsotired

    ohsotired New Member

    Thank you both. I will look into some vitamins and look for a specialist. I am on an HMO, but can change to a PPO come September - that will get me into a specialist. What kind of specialist treats CFS? I am in Texas with very few specialists in my network.

    I have had blood work done under two docs for fatigue symtoms. Both tested for anemia, hepititis, mono, EBV, and thyroid problems. I am not sure what else to test for, but I am willing to go through anything to rule them out. The frustrating part was having this doc agree that I "probably was right" His reasoning for not doing a diagnosis was that then if I had a sore throat down the line I wouldn't come in to see him and what if I had strep. He wasn't willing to risk me passing on later treatment.

    Again, thank you both for responding.
  5. Shirl

    Shirl New Member

    Hi, welcome to the board. I have FM, not CFS but wanted to welcome you.

    For a a doctor we do have a 'Doctor Referral' link at the top of this board, many people here have found good ones from the list.
    They are listed by states. I know there must be some good ones in Texas, we have a lot of members here from the Lone Star State!

    Also, here is a number you can call for a doctor; 'FM Network' 1-800-853-2929. I am sure they could make a recommendation since both FM/CFS do have cross over symptoms.

    The only thing I am concerned about, is why did your doctor prescribe Paxil? You did not seem to be clear on that yourself.

    Just curious about that one. I know a lot of people get help from Paxil that have depression, but I don't recall you saying you are depressed. Be sure to ask your pharmacist about the Paxil in general, also do a web search before starting this one.

    Again, welcome to the board, and let us know how you are doing......

    Shalom, Shirl


    [This Message was Edited on 05/30/2003]
  6. sb439

    sb439 New Member

    Paxil is for depression and anxiety. If someone does have neither depression nor anxiety, there should be *very* good reasons why they take it nonetheless.
    Sorry, ohsotired, of course we don't know whether you are depressed or anxious, but you don't list it among your symptoms.
    It surprises me how again and again doctors prescribe antidepressants for people with CFIDS or FMS, regardless of whether they are depressed. I bet there is some totally out-of-date manual somewhere they read which says (wrongly!!!) CFIDS/FMS are caused by depression or symptoms of depression. (I think it's more likely that antidepressants cause CFIDS/FMS in some cases ...)
    Arrgh
    Susanne
  7. ohsotired

    ohsotired New Member

    Thanks I will call the number for more choices. The dr. simply asked (after I listed the above symptoms) if I had stress in my life. I said of course, don't we all and he automatically assumed that I had anxiety disorder due to high levels of stress and said that I had already been in to see him for acne in Dec and so he was putting me on Paxil. (I don't see the connection.) First, I discontinued my birth control - no more acne, but using other methods, and I spoke with my marriage counselor (Ph.D. in Psyc) who we have been seeing for 3 years and she disagrees with the diagnosis. And my husband takes Paxil and so I know the side effects well and am not ready to fill the subscription yet. For him, it is the right thing. I don't disagree that it works for some individuals.

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