Need advice

Discussion in 'Fibromyalgia Main Forum' started by pjl, Nov 5, 2002.

  1. pjl

    pjl New Member

    I am desperately seeking an answer as to what is wrong with me. The articles I find are vague and the Doctors think I am nuts. Actually, it is hard to get one to stop and listen long enough. I am so sick of feeling sick. Maybe if I can get opinions or suggestions as to where to go for help, I won't feel so hopeless. Thank you to anyone who can give me some input.

    I've been told I have depression, adult ADD, and chronic sinus problems. Usually I am told...try this med and see if you feel any better. I have taken antidepressants and prescription sleeping pills for 8 years now. I still feel miserable.

    Where to start...

    Every few months, I come down with flu like symptoms. I ache in my joints, have exhaustion, fatigue and run what feels like a low grade fever. When I take my temp, it usually is only one degree. I can only function until around 3:00, then I'm shot for the day. I find myself telling people that I don't feel well.....more often than is normal. These flu symptoms continue until around 6 weeks later, and I can't stand it...I go to the Doctor and they always think it is a sinus infection, although I have no sinus symptoms except a mild sore throat. I get antibiotics and usually feel better in a month. It all starts over again in another month or so. My pain is throughout my torso area...below the neck to the top of my thighs. I feel inflamed and toxic.

    Lately, I've added IBS (diagnosed) and have lost 18 pounds without trying. (It has been over the course of a year). Thyroid has been tested...nothing abnormal.

    I had a hysterectomy 9 months ago, and they found endometriosis. I recently found talk about the tie in of FM, CFS, endometriosis and depression.

    What tests can I have done? The Docs just think I'm depressed and always will be. I know it is physical.

    Help!
  2. pjl

    pjl New Member

    I am desperately seeking an answer as to what is wrong with me. The articles I find are vague and the Doctors think I am nuts. Actually, it is hard to get one to stop and listen long enough. I am so sick of feeling sick. Maybe if I can get opinions or suggestions as to where to go for help, I won't feel so hopeless. Thank you to anyone who can give me some input.

    I've been told I have depression, adult ADD, and chronic sinus problems. Usually I am told...try this med and see if you feel any better. I have taken antidepressants and prescription sleeping pills for 8 years now. I still feel miserable.

    Where to start...

    Every few months, I come down with flu like symptoms. I ache in my joints, have exhaustion, fatigue and run what feels like a low grade fever. When I take my temp, it usually is only one degree. I can only function until around 3:00, then I'm shot for the day. I find myself telling people that I don't feel well.....more often than is normal. These flu symptoms continue until around 6 weeks later, and I can't stand it...I go to the Doctor and they always think it is a sinus infection, although I have no sinus symptoms except a mild sore throat. I get antibiotics and usually feel better in a month. It all starts over again in another month or so. My pain is throughout my torso area...below the neck to the top of my thighs. I feel inflamed and toxic.

    Lately, I've added IBS (diagnosed) and have lost 18 pounds without trying. (It has been over the course of a year). Thyroid has been tested...nothing abnormal.

    I had a hysterectomy 9 months ago, and they found endometriosis. I recently found talk about the tie in of FM, CFS, endometriosis and depression.

    What tests can I have done? The Docs just think I'm depressed and always will be. I know it is physical.

    Help!
  3. teach6

    teach6 New Member

    I was like you for years. My doc kept telling me there was nothing physically wrong with me, but I knew there was. There were too many physical symptoms for it all to be emotional.

    Have you tried looking for a different doc? I would suggest that you look for one who is experienced in working with CFS patients, because your symptoms sound like that may be what is wrong.

    I think most people on this board can relate to what you are dealing with right now. That's why we have such a feeling of relief when we finally get a dx, even if it is not one we would have chosen. We're relieved to have someone finally validate that our illness is physical.

    Good luck to you. I hope you are able to get a dx soon.

    Barbara
  4. Shirl

    Shirl New Member

    Hi PJ, welcome to the board, it sure sounds like you have CFS, but of course I am no doctor! I have Fibro, and do get that awful fatigue now and then, but not like the members who have CFS.

    What you need is a good doctor. One who will really LISTEN to what you are saying.

    I sure hope you find some help soon, and you are very welcome here to ask all the questions you have.

    Shalom, Shirl
  5. sb439

    sb439 New Member

    I'm not a doctor, but it seems to me the kind of recurrent flare ups you have together with a slight temperature suggest you may have the sort of CFS that involves a virus (in fact what you describe sounds a lot like me four years ago). If you can afford it, you should see a specialist in CFS/CFIDS/ME who would test you among other things for:
    HHV6 virus reactivation
    EBV reactivation
    perhaps also:
    Chlamydia pneumonensis
    mycoplasma
    but I'm not sure whether the symptoms of the latter two of the kind of what you experience, other members of the board who've tested positive for these will know better.
    All of these can be treated, but all treatments take quite some time.
    Other tests would be for adrenal insufficiency, parasites and bacteria in the intestines, and a full lymphocyte count.
    If you can afford it, see a specialist as soon as you can - you seem not to be terribly ill yet, and the sooner you find out the particular things that are wrong with you, the higher the chance of recovery with the right treatment.
    Avoid stress at all costs!
    If it feels like being physical, it *is*, whatever the doctors you've seen so far say.
    love,
    Susanne
  6. joyof3

    joyof3 New Member

    It seems like you have been given some good advice so i will just welcome you. I also have adult ADD. stephanie
  7. RoseTx

    RoseTx New Member

    Any doctor can dx Fibromyalgia. There is no test that will prove you have it. What you go through is all the other tests to rule out other diseases. If you can see a Rheumatologist that would be the best step. Find one and then ask him how many patients he has with Fibromyalgia or Chronic Fatigue. If he has none, find another one. When you find the right doctor he will have you come in and will examine your body looking for particular point on your body that are extreemly sensative. They will be so sensative that when they are probed you will probably nearly jump off the exam table.
    Meanwhile you might want to go to the library looking for a book: Fibromyalgia and Chronic Myofacia Pain Syndrome by Devin Starlanyl and Mary Ellen Copeland. I consider this book a must have. It costs around $20.00 but will be well worth the cost. If I can be of any further help, please do let me help. Hugs, Rose
  8. karen2002

    karen2002 New Member

    Nice to meet you, but sorry that it is because you are not well. Many people find it very difficult to find a physician, who will attribute CFS and FMS as valid physical conditions, and offer treatment.
    There is a CO-Cures Good Doctors List on this site. Go to the homepage look for the "Dr Referral" link, click it. The next page will have a link for the "Co-Cures Good Doctor List" See if there is a doctor in your area. There are also support groups there, and perhaps one is in your area. A support group member would be a good source in locating a Doctor. The American Medical Association, also has Doctors listed by specialty and location. Just type American Medical Association in one of the Search Engine Boxes. I strongly recommend calling the Doctor you find, and before making an appointment, ask the receptionist how many fibromyalgia, and chronic fatigue syndrome patients does he/she see.
    Karen