Chronic Pain Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by feagin, Feb 18, 2003.

  1. feagin

    feagin New Member

    Hello everyone who suffers an affliction of any kind. I'm a 58 year old male who has two adult sons and a wife of 36 years. In 1996 I was involved in a auto accident whereby I obtained a brain injury that was diagnosed a few months later by two neuropsychologists which showed I have frontal lobe damage, temperol lobe damage and difuse damage throughout my brain. I can't work because of it and am on Social Security Disability. A year or two later I was playing around with a metal detector and tried to get up off the ground. I couldn't! I was panicked and crawled over to the deck and pulled myself up. I went through all the doctors and they determined I had Polymyalgia Rheumatica (PMR). I pointed out I had sore spots on my chest, neck, arms and elsewhere and asked if it could be Fibromyalgia. The answer: "Men don't get Fibro, take this predisone and everything will disappear in a few days" Nothing disappeared. I was on Predisone hell for over 6 months until I was titrated down to 0. They then put me on a drug that is used for antirejection. No help. I was suffering severe muscle pain and am allergic to aspirin so I ended up on a high total of 240mg of Oxycontin. I've titrated down to 40mg. Anything below that and I get restless legs.

    I asked the doctor on a tip from someone on the net to check my testosterone. He laughed and said it was fine. I insisted and he was astounded when it came back around 60 when 300 is low normal for a man. I had about as much testosterone as a woman naturally has. I did not develop any female traits. I was given a gel and it has me up in the normal range. Much of the pain subsided. My muscles below my waste are weak and ache. Pain killer and tylenol help. I am on about 20 pills including insulin for diabetes. I just had two heart stents put in but my heart is in pretty good shape overall. Now to the problems:

    Pain in the legs below the waste, weak muscles in the legs, tenderness in the leg muscles and sleeping problems. I sleep fine but wake up after about 6 hours and can't get back to sleep. I don't drink alcohol, coffee, or tea (I'm a Mormon). During the day, I will simply drop off to sleep in the car, in the house or wherever. I find it embarrassing. I have been tested for sleep apnea. I do feel tire most of the time. I don't want to go round and round all the neurological testing. John's Hopkins simply told me I had "Chronic Pain Syndrome" and o.k'd the Oxycontin for the doctor.

    Any ideas, help, suggestions, etc????
  2. evileva

    evileva New Member

    Sounds like you have had a rough time of it. Men CAN get Fibro and there are a few men on this site that can tell you about their experiences. Madwolf is a good one to talk to, he is in the medical field. Hang in there and good luck.
    Eva
  3. phenom

    phenom New Member

    hello, fibro is characterised by pain above and below the waist on both the left and right sides of the body. you say you have pain only below the waist so it might not be FM........but then again, it might because this illness is so varied. have you been tested for the many many different kinds of muscular dystrophy? there are so many that set in at different times of life and have different symptoms. maybe you should get checked for that to be on the safe side. hope all goes well.

    phenom
  4. Fibromiester

    Fibromiester New Member

    and Welcome to the board!
    You have definately been through it all, haven't you! I hope you find the folks here-loving and informed, as I have. We all share common ground; fighting the often invisible beasts of pain and disease, and whatever may come with them! Often our DR.s don't believe us, and if necessary we must find a new one, etc. I would like to suggest a very good book by D.Starlanyl & M.E.Copeland --"Fibromyalgia & Chronic Myofascial Pain Syndrome". It has helped so many of us pinpoint our problems, so we can go back to the Dr. with Info. on the Where and the Why...
    Men DO get FM, and there are other men on this board with FM. You mentioned in your intro that at first you had pains in your neck, chest, arms...as well as legs. Does this Upper-body Pain still exist?
    People with FM (and about everyone here!) also have sleeping problems. The reason we don't feel "rested" is we don't get the DEEP sleep needed for restorative healing(of muscle tissue,etc.). Please look into that book- it will give you so much information.
    And feel free to ask questions...we are not experts, but in many cases- been there- done that! or try this- try that!!
    I pray you will find answers for your pain soon,
    Love,
    Fibromiester
  5. Cactuslil

    Cactuslil New Member

    I am blowing mine right now as I figured I had Sjorens and that was just that...til I had a fitting done today at the docs. (dentist) She is a friend as well as a dentist and she copied the info on Sjorens I needed! I meet almost all the criteria. Much to learn and straightened out my friend.

    When I am a little more clear-headed I'm hitting the web and reearch this myself. Perhaps you should do the same. Love CactusLl'