Ideas for an OddBall?!

Discussion in 'Fibromyalgia Main Forum' started by programmer, Jun 13, 2003.

  1. programmer

    programmer New Member

    Hi all,

    I usually just lurk in the shadows of this site from time to time, but decided to finally post something since I’m running out of ideas on how to address this health thing. My symptoms first appeared just over two years ago – I can all but pinpoint the day when they started.

    Since that fateful April day, little has changed symptom-wise. I have a hard time sleeping through the night due to the pain/numbness in my shoulders, chest, legs etc. I wake up every morning with body aches and stiffness that make it feel like I’m just getting over the flu. I have pain in my muscles throughout the day and am pretty tired by the time I go to bed. I have headaches and stomach aches frequently. That’s it in a nutshell.

    Unfortunately, I don’t have many ‘measurable’ symptoms. I don’t have any joint or other swelling at all. I’ve had a score of tests (head MRI, spinal tap (check for MS or brain tumors), various muscle tests, tender point test (check for polimyositis, fibromyalgia), back x-rays (to check for Ankylosing Spondilitis), many blood tests (to check for all kinds of problems), chiropractic visits, etc).

    The only tests that came back questionable were:

    1. Epstein Barr – showed positive (almost two years ago)
    2. ANA – showed a ‘speckled’ pattern (six months ago; I’m having this test redone on Monday).
    3. Bone density – showed that I was on the low end of ‘normal’ (this was done more recently and my rheumy is doing some more tests this week to try finding out what’s going on)

    If there’s anything that has been comforting out of this whole testing process, it’s that whatever is causing this must not be life threatening or it would have killed me by now! Also, I’m very fortunate to be able to carry on much of the same activity with work, family, etc. From time to time I take a ‘down’ day so I can keep in shape to meet the demands of my job.

    In my quest for better health, I wondered if any of you had ideas on what I might suggest to my rheumy that I get checked for. I suppose I’m unusual since I am male and most of the conditions diagnosed with my set of symptoms seem to gravitate toward females.

    Thank you in advance for your insight.

    programmer
  2. granmakitty12

    granmakitty12 New Member

    The way I was diagnosed was a process of elimination. Also, it helps to have a doctor that understands fibromyalgia and
    believes what you are telling him or her and CARES!!

    If you aren't satistied with your doctor, I would suggest you look for a new one. And don't let them intimidate you. This pain is not all in your head.

    Keep coming back here. The people here are very caring and helpful. Granmakitty
  3. Shirl

    Shirl New Member

    Hello Programmer, welcome to our world! These two illness are baffling to everyone, doctors, ourselves, and everyone else.

    You sound like a combination of FM/CFS too. I have that morning feeling like being hit by a 'Mac Truck', its common among us.

    Its not all women by the way, more and more men are beginning to show up with these symptoms too. We have quite a few men on this board as well as women. Although women are in the majority.

    You are right, whatever causes this is not going to kill you, I have had this now for over 20 years, and I am still around looking for answers.

    Stay with us, and I know you will find some ways to relieve your discomfort if not a cure for now. We are all waiting for research to find the cause, and then a cure.

    Again, welcome to the board and hope we hear from you often.

    Shalom, Shirl
  4. dd

    dd New Member

    Welcome to the board. Glad you decided to join us.

    Your symptoms sound very familiar. I don't get the tremendous pain that a lot of people here do but I do get the stiffness and numbness. Most of my problems are nuero in nature. My muscles ache too.

    I also tested positive for CMV and EBV.

    Sounds like you've been thru the mill with the testing...like most of us...another thing we all share in common.

    Hope you get a lot of useful information here. There are a lot of wonderful and caring people on this board.

    Again, WELCOME.

    Peace,

    Debbie
  5. programmer

    programmer New Member

    Thanks for the insight everyone. This site, with the library and message board has been invaluable in getting a better understanding of what's going on.

    I am fortunate to have a rheumy who believes in FM/CFS and is willing to dig a little deeper on what might be causing it. When we were talking during my first visit to him last year, he commented that the medical profession at best knows about 50% of what there is to know about the human body. It's nice when doctors admit that they don't know it all, but are willing to work with your particular case.

    I'm pretty lucky to have a relatively mild case of whatever this is. There a lot of people who have really been the ringer with these symptoms. One can only hope we all get the help we need.