Male with fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by BigGuy, Jun 29, 2003.

  1. BigGuy

    BigGuy New Member

    Hello , I'm new to this message board need some help here. Been having pain for years just found out what it is my current Doctor dosen't seem to believe me now looking for new pimary care Doctor in or close to Col. Ga.. Also found that not many men have this problem . Are any of you men and do you have advice for me . Am in severe pain now affecting my work cannot afford to lose my job. Doing research on FMS , lots of info NO help.
    Thanks for any help:
  2. tandy

    tandy New Member

    Welcome to the board!!! there are some guys here with FM,I'm sure they'll come along some time and share some info.The board is slower on the weekends.
    I've had fibro now for 11 years.your right on....alot of info,no help or not much anyway! The first few yrs of my illness wer'nt too bad but the last few yrs its progessed enough to where I had to give up my job in retail management.Currently I'm on elavil at night and flexeril for muscle pain~that helps somewhat but not as much as i'd like!But getting a good dr. that understand FM and is will ing to treat your pain is a job in itself!! Just wanted to say hi! Hope to hear more of you.....Take care:)
    Tracey
  3. klutzo

    klutzo New Member

    We have a P.A. who has Fibro himself and comes here to help us. He goes by the screen name of "Madwolf". We also have a male medical resident who goes by "ac77" and also has it. If you have any technical medical questions, just adresses your post to them and they are always glad to help.
    Having said that, I hope you will see a Rheumatologist or a Neurologist for treatment.,though a knowledgeable general practitioner is far better than an a**hole of a specialist! Maybe also see an Endocrinologist just at first to get two tests done: 1) a comple thyroid panel including a free T3 test and 2) a testosterone level, or talk your primary doc into running the tests.
    Many of us have an inability to properly convert T4 thyroid into the T3 that the body uses. Supplementation with natural thyroid hormone can help a lot and improves energy and sleep. Improved sleep leads to less pain.
    Many men with Fibro have been found to have lower than normal testosterone levels, and when treated their symptoms improve a lot, so this should also be checked.
    Also, check out the doctor referral section at the top of the page here. If you don't find one there, Fibromyalgia Network has an excellent doctor referral program, and you can call them at 1-800-853-2929.
    I would also suggest going to the chronicfatigue website of Dr. Gerald Poesnceker and reading up on adrenal fatigue and what can be done to treat it.
    There are many articles right here in the library at this site about mycoplasma infections, candida overgrowth, viral infections, and other opportunist infections that can drain your energy with this illness, as well as the hypercoagulation and nervous system problems we develop after having this for awhile. Do some reading in our library, then put the name of anything you are interested in knowing more about into the "search previous posts" section at the top of the page, and it will bring up all our previous discussion on that topic and how we treat it.
    It can be a long road, but there are ways to help yourself. Doctors are usually not the answer, but are needed to prescribe things. Beyond that, we must do most of the work ourselves.
    Please ask questions, and we'll try to help you.
    Klutzo
  4. schnoodle

    schnoodle New Member

    I'm not a guy, but I just want to say that I am glad that you guys are posting your messages on this site. Please don't be intimidated by all of the women. We need you guys too.
  5. sujay

    sujay New Member

    Welcome to the board.

    I'm a female family physician who came down with fibromyalgia and chronic fatigue syndrome almost 3 years ago, but my now 12 year old son came down with all the same problems and more about a year and a half ago, too. Sometimes he hurt so bad all over he couldn't even walk, and I'd have to carry him out to the car. I'm happy to report that both of us are doing fine now as long as we take sensible precautions (like getting enough sleep instead of staying up to all hours playing video games) and keep taking our colostrum. I suspect we are both still infected with mycoplasma, and I won't really be happy until I'm sure it's been eradicated completely, but we are leading normal lives, my son is the fastest runner in his school, and he made the allstar basketball team in his league this last winter. (Last year he was so sick he couldn't even WATCH his team play.)

    This board makes me sad sometimes because so many people are still having to focus on pain control and relationship problems and how to live with chronic disease. I am firmly convinced that control of this disease (NOT just control of the pain, which is still too much of a problem for too many people) is within reach for almost all of us, and many could be cured.

    I'm also one of those who believe ME/CFS and FM are one and the same. This site has two message boards listed in the index, but you can tell by the title at the top of this page that they don't try to separate them out. I also believe, like Garth Nicholson, that many instances of Gulf War Illness are caused by the same problem, primarily triggered by mycoplasma infections. If you check out some of my posts you'll see that I am convinced hypercoagulation holds the key to many of the problems that we are dealing with here. Jellybelly has been on this board longer than I, and has done a wonderful job presenting a lot of the research supporting this theory. I have seen too many patients improve to doubt its significance.

    This is the first theory I've seen in over 20 years of practicing medicine (and caring for patients with CFIDS) that not only helps us figure out what's going wrong with patients, but helps us figure out how to help them get better. If I had not already started to see my patients improve I would have closed my practice completely when I first became ill and found myself confined to bed for weeks at a time. (As it was, I had to shut down for 4 months, and I'm still trying to dig myself out of debt, but it sure beats worrying about my family's health!) This disease model is certainly not yet widely accepted by the medical community, but understanding and implementing it require only an understanding of basic clinical science and a willingness to consider the possibility. Unfortunately too many of my colleagues are convinced that these are psychological disorders, ignoring masses of scientific data that give their position the lie.

    By the way, did you know that women's capillaries are much smaller than men's? It's no wonder to me that, if hypercoagulation is at the root of the problem, so many of the posts on this board are from women. In my experience there is definitely a genetic predisposition because some people are more likely to produce clotting factors or have a hard time cleaning them up (or in some cases even both). Another problem I see in my practice is that other family members are often affected as well, because in most instances the hypercoagulation seems to be stimulated by the immune system, and infections can spread to susceptible spouses and children.

    This is a lot to absorb, but take your time, do your research, and KEEP ASKING QUESTIONS. You'll find the vast majority of members of this board are unfailingly kind and willing to help and encourage you in whatever way they can. It really helps to know you're not alone in battling this dreadful disease, even if your family, friends, co-worker and medical providers often don't seem to have a clue what you're going through. Educate yourself, educate them as much as you can (but don't beat your head against a brick wall) and keep searching until you find people who will support you and help you get well.

    We look forward to hearing about your progress. There will be plenty of ups and downs along the way, but with a little luck you'll be echoing one of my patients who told me the other day that "my bad days are better and my good days are better and my good days are coming more often." It's a long, hard road, but worth it to get to a healthier future that is not riddled with constant pain.

    Best wishes. We look forward to hearing from you again.
    Sujay
  6. turtis

    turtis New Member

    i am a guy with fibro :-(

    but this is a great site to hekp manage disese

    turtis
  7. Jen F

    Jen F New Member

    I have 2 good male friends with CFS, one also has FM. Met them both through CFS support group.

    Unfortunately, neither of them are well enough to work full time.

    I am sorry to say you might find working full time to be a bit of a problem. Do you not have any disability insurance? Pushing myself to continue working so long made me worse and my prognosis worse. I was also not wise enough to look into disability benefits, I stopped working full time and did part time jobs believing that with a bit of a rest I would improve.

    Perhaps that might have worked if I didn't have tragedy after stressful tragedy occur in my life.

    Now here I am on social assistance. If I had looked into disability benefits, it probably would have been a fight, but the gov't benefits have been a fight anyways, and I would have had a higher income and more prescription, chiro, massage, Naturopath, etc benefits. Right now I only have limited prescription and eyeglass benefits - and am grateful for that.

    Hopefully you have a mild case and will find treatment or alternatives that help you and maybe you will be able to continue working full time. But...be prepared to take some time off from work. Again, sorry.

    My male friend with the FM has developed a close relationship with the mini-Thumper percussion massager I recommended to him. He finds it very helpful for his sore legs, etc. He also finds Efamol [evening primrose oil] capsules reduce his pain by about 10%. He is trying Moducare Sterinol and finds the pain that moved into his hands has now receded back up to his arms, umm...lets see what else...

    I get the impression that both find sex a nice temporary pain reliever and can help with sleeping.

    Speaking of sleeping, both have sleep disorders, one has restless legs, so you might want to consider checking your sleep quality and work on that angle - a better sleep will help your pain.

    Obviously you really need to find a supportive doctor.

    Sorry you are in so much pain. Some people have had to resort to opiods such as oxycontin to have a reasonable quality of life. I think if once you have pursued all other avenues and you are still in a lot of pain and your quality of life is low, these medicines are an acceptable step.

    A lot of people find certain antidepressants helpful, either for energy, and/or pain and/or for better quality of sleep, and/or for secondary depression that inevitably accompanies a chronic illness. But, if Effexor is suggested, be careful, some people have had unpleasant experiences on that, also other ssri's have sexual side effects, so if that is a concern but you want/need to increase your serotonin, than consider an herbal source: St. John's wort.

    From what I have heard, some exercise can be helpful for FM. For those of us with CFS, more than a little exercise exhausts us and is often un-helpful, but supposedly the exercise is helpful for your FM muscle pain.

    One of my male CFS/FM friends rides an exercise bike at home, the other jogs when he can manage to force himself.

    A very good bed is important.

    Some people are finding special diets very helpful, but I warn you, they can be very challenging. Can't eat ice cream every day! There is a lot of info on this site and in books on the diets people try such as the high protein, low carbo [I do that and it helps a bit ---when I can stick to it!], the antiCandida diet [I don't eat yeast and avoid refined sugar, it helps but I haven't been able to eliminate sugar completely...addict here], and there is the Guai protocol -- another man who was in my support group found this helpful and he's back to work full time.

    Good luck, and like someone else said, please don't be intimidated by the large number of women visiting this site. Men get Fibro too and in some ways can be harder for you guys due to social conditioning that you are supposed to be strong and virile, right? don't worry I'm sure a lot of the other guys out there with FM will be able to share thoughts with you.
  8. BigGuy

    BigGuy New Member

    Got 8 replys to my posting.
    My thanks to Tandy,Packman,Klutzo extra thanks,schnoodle,Sujay extra thanks + why are most Doctors hardheads?,turtis jen f and Kidsonny. Got a slow internet connection can only use it early in the morning.
    So I'll let you guys know how things go when something goes.
  9. sujay

    sujay New Member

    Gosh, my siblings will affirm that I was hard-headed long before I thought of going to medical schooll. (Sometimes I think that was a major factor in my admission. Someone must have realized I wasn't going to quit.) I find it interesting, though to see that even though people always seem to be grousing about how arrogant their doctor may be, they never seem to give up their search for the one doctor who knows more than everyone else. I hope you've found one who's willing to work with you. We look forward to hearing from you again.

    Good luck, and remember to be kind to yourself,
    Sujay
  10. BigGuy

    BigGuy New Member

    sujay-I was not talking about you. Notice I said most Doctors. Your reply to my original message was the most help to me. Thanks again
  11. sujay

    sujay New Member

    Hey,

    I've got kids, two of whom are grown, so I've learned not to take things too personally. I was just poking a little fund, and trying to remind all of us we generally see things from only one perspective at a time. That's another reason why sharing on a board like this is so helpful to me.

    Take care,
    Sujay
  12. Shirl

    Shirl New Member

    Hello Bigguy, welcome to the board. Yes, we have several men on this board, its not just a female disease anymore. Young children are also being affected with it.

    The biggest help that I have gotten is from taking Pro Energy (Malic Acid and Magnesium), also ZMA (zinc, magnesium and vitamin B-6) for deep stage four sleep.

    Its finally agreed on that most people men and women, who suffer from this illness are deficient in this mineral.

    I have been taking the Pro Energy for 3 years, and the ZMA for almost 17 months. I am now sleeping at least 7-8 hours a night without waking, my spasms and pain are way down, and the fibor fog is a whole lot less.

    When I do get a Flare, it only lasts a few days instead of weeks and months now.

    I take a host of supplements, but these are the two main ones for anyone to start with.

    In fact, it was a man who recommended the ZMA to me for sleep and the pain. He was right. It was recommend to him by his personal trainer. Magnesium helps heal muscles while we are sleeping. Therefore we need to sleep deeply in order to heal.

    Both can be bought here at Pro Health, just go to the 'Store' link at the top right of this page, and you can read about both of these supplements. If you buy the ZMA anywhere else, be sure you get the SNAC brand only (that is what is sold here), the other brands did not work for me or my husband (he does not have FM but has problems sleeping when at work away from home).

    I hope you get some relief soon, this is a devastating illness for anyone, but very hard for those who much work for a living.

    I have had this for over 20 years, and this is the most relief I have had in all that time.

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

    Shalom, Shirl

  13. BigGuy

    BigGuy New Member

    Need all the help I can get. Trying to get together a self help regement. Collecting info now lots of things to consider. Also have appointment with pain Doctor soon , maybe get some relief.
  14. loopyloo

    loopyloo New Member

    Welcome to the board you will have lots of friends here and you can ask anything and you will get answers every one is nice and if your upset about some think you can share it with the board no one will think less of you as we are all in the same boat with the same illnesses and looking for answers
    Well come again from Loopyloo in the UK