Chronic Fatigue Syndrome

Discussion in 'General Health & Wellness' started by MarkwCFS, Jul 2, 2012.

  1. MarkwCFS

    MarkwCFS New Member

    Hello,

    My name is Mark and I have had CFS for 11 years. I got CFS as a result of a hyperactive thyroid disease called: Grave's Disease.

    I have read some posts about other men who have CFS.

    I learned from an article sumbitted to me called: "Men with CFS" by Pamela Young...that 1.800 million women have severe CFS and only 200,000 men have severe CFS. (This info came from The Centers for Disease Control and Prevention (CDC).

    As a result most support groups for CFS focus on women because they are in the majority. I read that men who have gone to support groups don't get that much information because most clinical studies are done for women.

    I would be happy to share my experiences and research with any men with CFS.

    In the beginning of CFS I was sleeping 14 to 18 hours a day for approximately 3 years. At 11 years I am still sleeping 11 to 12 hours. I am also frustrated that I cannot workout at the gym. There was a period around my 4th & 5th year where I worked out 3 times a week or practiced the rings and parallel bars in a gymnastics facility. Working out of course makes one feel so much better mentally as well as physically.

    I do stretches at home and try a couple of pull ups. That is the extent of my exercise for the past 2 years.

    I tried homeopathy and it made me worse and I had a couple of years of relapse.

    (Homeopathy however does work for some..but the homeopopathist needs to SPECIALIZED IN CFS).

    I have been on a blood type diet which is helpful to me. (Strict diets I have found are too much stress for someone with CFS).

    I have met at least 7 women who had severe CFS and the worst case was 9 years. Most woke up one day after approximately 3 to 5 years and it was essentially gone. BUT they still have to monitor their energy and diet.

    I have not shared with very many men about CFS. I cannot find them. I did hear from a man who has had CFS since 1982 and he wrote me that he just had to "cope with it."

    I have tried other avenues to improve my CFS. I would appreciate hearing from other men with CFS and how you got CFS.

    Maybe we can give each other hope and other possiblities.

    Again I have tried and done much more but I will share according to another man's condition if I am able to.

    Bless you guys with CFS.

    Mark

  2. rockgor

    rockgor Active Member

    Welcome to the board. As you may have discovered, there are several
    boards at this site. The menu is in the upper left corner. The board rules
    are in the opposite corner.

    There is a research library (above) and a search window (also above).
    If you search for "Men with CFS" a thousand posts will come up.

    My CFS started when I was 39. I had written a book for law students,
    but was having a terrible time typing it up. My energy was just slipping
    away. Also became very depressed. Within 5 years I was disabled and
    then worked part time till I retired.

    I battled depression with meds, hospitalization, therapy, etc. Tried all
    kinds of stuff to increase energy but nothing worked. Then, about 3 years
    ago a fellow poster, Jaminhealth, recommended Vit. D3 and grapeseed
    extract. I added the Vit. B12 patch. These gave me some extra
    energy.

    I have been around since the FDR administration, so also have the problems
    of aging, prostate cancer, Alz., etc. Don't do much nowadays. Just read and
    listen to music and walk the dog.

    Good luck
    Rock

    PS As is often the case, I forgot something. You can cut and
    paste to move your post to the combination CFS/Fibro board.
    Probably get more responses there. My impression is that we have
    a substantial number of men here, but most of them don't post
    too often.
    [This Message was Edited on 07/02/2012]
  3. MicheleK

    MicheleK Member

    Hi Mark, I too want to welcome you though I am not a man, I have had this disease for 20 years like Leah. Severe the first couple years, then I got a break and was able to live pretty well for five years, until I too, got Graves disease! First I got Hashimoto's then it went to Graves. The endocronologist did an overkill on my thyroid and that threw me into the severe bedbound state for a number of years.

    The past year with different adustments by my M.E. doctor, I have had enough improvement so that I do not have to stay flat in bed all the time. I am still mostly housebound though. I don't know any patients with M.E. or CFS who just got better. I sure with I was one of them though!

    I hope you find some men to share your years of experience with. Hugs, MicheleK
  4. happycfs

    happycfs Member

    Hi Mark,

    Do you get on facebook at all? There are cfs men's groups there. I don't know if you have heard of Dr Franky Dolan, but he does a lot of work for men (and women) with cfs. He has had it for many years too.

    I understand your pain. Good luck!!

  5. jc16551

    jc16551 New Member

    Mark,

    Effective treatment depends of effective diagnosis.

    To reach an affirmative diagnosis of CFS all other possible/identifiable causes of fatigue must be identified and ruled-out as a possible cause.

    Did you have thyroid surgery and/or take anti-thyroid drugs? Do you currently have a thyroid gland in place or has it been removed?

    There's a strong correlation between hypothyroidism and atypical depression, which causes reverse vegetative symptoms (hypersomnia, increased appetite,) and that's just one example of something that could be causing the excessive sleeping and lack of energy.

    While only your licensed physician can provide you any kind of medical advice, it would seem sensible to look into alternative causes for your symptoms as this may lead to a more effective course of treatment.

    Dr Dan
  6. TwoCatDoctors

    TwoCatDoctors New Member

    Mark, I'm not a doctor, ProHealth provides no doctors for this board, and we haven't had doctors that come here, and truthfully anyone can post here on the board as a doctor and someone already had posted as Dr. Oz quite a while back.

    Mark, I don't have CFS, but there is a Fibromyalgia Board here that has a lot of people with knowledge and resources of CFS that I believe would be of help to you. They are good regular people who have been through Fibro and CFS for so long and they understand. Try it.

    I do realize the Journal of American Medical Association did post an article about hypothyroid and depression (I'm not sure but doesn't Graves make the gland hyperthyroid), but the experts have yet to find a definitive cause for atypical depression.

    Atypical depression is a major depression impacting your life greatly with many times far more symptoms than just increased appetite and sleeping more.

    If you do have those those symptoms, you might wish to contact your doctor that is treating you for Graves, get an appointment and take the article below with you. It is from the U.S. National Library of Medicine and your symptoms are on it as part of Graves. It may be that the doctor wants to retest and adjust your meds.

    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001398

    Best wishes and many hugs.













    [This Message was Edited on 07/14/2012]
  7. helsinki

    helsinki New Member

    Google Dr. Martin Lerner and his foundation...he treated my friend with CFS and she is well..after a year on Valtrex...his theory is that CFS is caused by a virus. His research has all be published and is on his website and you can have your doctor run the viral screens and treat you as if you were in his office in Michigan. He is 82 now!
  8. bedazzled

    bedazzled New Member

    Hi Mark,
    Really sorry to hear about your problem.Chronic illness can be really troublesome and tends to stay with you and bother you for lifetime.However ,with the appropriate physical care and healthy eating habits ,it can be limited and one can lead a normal ,healthy life. In my belief ,chiropractors can help largely with chronic fatigue syndrome.Also I agree with Dr. Dan about the proper diagnosis for proper treatment
    There is great deal of information on the internet in regards to that treatment.Check out this video

    http://www.youtube.com/watch?v=Z7pUbl7gylA

    I hope this gives you an insight into more options you may explore . Wishing you the best of health.
    [This Message was Edited on 10/05/2012]