Hello - 23 YO Male with FMS - Too Young?

Discussion in 'Fibromyalgia Main Forum' started by vinetti23, May 4, 2003.

  1. vinetti23

    vinetti23 New Member

    Hello everyone. I have spent the last hour reading your posts and I think there is a lot of great information here. You all seem to be like really helpful people, so I thought I would try to present my case and see if you had any thoughts.

    I am 23, and experienced FMS for the first time 1 year ago when my job had me flying twice a week and working about 60 hrs a week in various cities. I didn't know if I was coming or going, what city I was in, and I never really got quality sleep in those foam Marriott beds. So, sure enough, I started experiencing severe pain (though of course my coworkers were fine). I had dozens of blood tests but nothing showed up except a positive result to one of the Epstein Barr viruses - (i think it was the one associated with CFS...but then the doc said 90% of the population has the virus. he said i must have had mono in the past I think) Since that first episode, I've never been completely free of the pain except for when I am on vacation and sleep 10+ hrs a night. I try to work out so that I have muscle soreness in place of this burning FMS "exposed nerve" pain...

    Anyway, I had a couple of questions. Feel free to answer any of them that you can...

    Do you know anyone in the 23/male range with this disorder? Everything i read points to older women as the key group with this problem. How did this happen to me at this age?

    Do I have it for life now? I have ALWAYS had sleeping problems. I was actually diagnosed with DSPS (delayed sleep phase syndrome) which is another joy that is impossible to really "cure". It basically means my body thinks the day is 25 hours long and absolutely cannot adjust.

    It was suggested I try Melatonin for the DSPS but it actually made me have severe pain. I actually had pain from melatonin 2-3 years ago and never connected it with FMS but it was the same raw / burning pain that I have today. I almost never take it becaus eof this. Caffeine seems to be very bad too in terms of causing pain - but melatonin is like torture. Has anyone else had this happen?

    Because of my DSPS I was put on neurontin and klonopin at night (and was on it when I first experienced FMS) .

    Could it be possible that these drugs made the situation worse ? (I know it sounds like backward logic...but just imagine taking something like a painkiller every night...but not during the day. Wouldn't you have a "rebound" during the day? Maybe that was what was happening to me with the nightly neurontin / klonopin?) I'm still on the neurontin (600mg) at night w/ 1 mg klonopin.

    Do you guys feel like you need more sleep than your coworkers? I do - I sleep like 12 hours sometimes on the weekends.

    How do you deal with work? Sometimes, I just want to be like "please let me come in at noon - i'll be more productive since i won't be in severe pain!" but I can't exactly do that...

    The only only thing that works for the pain when it is bad is Vicodan. This is not easy to come by, but it's all that works. Othewise, I can take tylenol till my liver is green but I still feel pain.

    I don't have these "tender points" really that are talked about in journals, but I do have pain in such bizarre places (in the area around my knees, for example...) that it can't be normal. And it's a burning pain - not a muscle soreness...

    The last time I really experienced this muscle soreness was when I was 19 and on Accutane. Any connection? Accutane has forever changed the way my skin looks and acts (no cystic acne, but also much slower healing process.)

    Does anyone else have DSPS? I mean, do you feel like you want to go to bed later and later every night like I do? If I stay out late Saturday night, there's basically no way I can get normal sleep on Sunday night bc I will want to stay up just as late. This is always a nightmare.

    Thanks in advance to any advice you would want to provide.
    [This Message was Edited on 05/04/2003]
    [This Message was Edited on 05/04/2003]
  2. kar1953

    kar1953 New Member

    Actually fms is frequently found in children, so, no 23 is not too young. Have you been diagnosed by a doc? If not, I'd suggest you go to someone who has good knowledge of fms & get checked out. It might be something else.

    Right now I'm working 3 half days & 2 full days of work. After the full days, I'm really whipped & I only work 5 1/2 hrs. day - split! I drive school bus.

    Stress has a lot to do with having a flare up - traveling as much as you do & flying as much as you do must be stressful - probably even if you don't feel stressed you are. I just read a post the other day where someone mentioned that every time they fly they flare.

    Fms is more prevalent in women but there are many men who have it also. Probably more than have been diagnosed since men tend not to go to the doc as often as women. We listen to our bodies :)

    As far as do you have it for life? If you are dx'd with fms, then yes, it is for life unless someone comes up with a cure. As of now, there is none. There are things you can do to minimize your pain & make it tolerable. Physical therapy is good - my therapist gave me a home exercise program that I TRY to follow daily. My body lets me know if I skip too many days!

    I really can't help you out with the other questions. Hope this has helped you some.

    I'm sure there are others out there who have far greater knowledge of this than I. I've only been dx'd with it in Feb. of this year, but had symptoms for years.

    Hope you are soon feeling better

    Take care........Kathi
    [This Message was Edited on 05/04/2003]
  3. Mikie

    Mikie Moderator

    We don't have as many men here as women and we don't have as many younger people, but we do have some. Our illnesses are starting to strongly affect children at younger and younger ages. I believe those with genetic predispositions are being overwhelmed by environmental toxins and the stresses of our society.

    This is a good place to learn about our illnesses and treatment options.

    Love, Mikie
  4. vinetti23

    vinetti23 New Member

    Thanks guys for the welcome and info :)

    I am glad I found this site!
  5. barelyme

    barelyme New Member

    23 isn't too young for symptoms. I have FM and my son who is now 20 has both CFS and FM. He became quite ill in 7th grade and has been pretty bad ever since. He can't work and is just trying to make it through college. The isolation factor is bad enough for women, but for men I think it is even worse.
    sherri@bak.rr.com
  6. goingslowlycrazy

    goingslowlycrazy New Member

    Hi Vinetti!
    So sorry that you have this, but you have come to the right place. There is so much info here and so many helpful, caring people.

    You can find out a lot about specific issues by doing a search (at the top of the page)...when I first came here, that kept me busy for hours!

    I'm not at all surprised that you need more sleep than your co-workers...they are not suffering what you are.

    You will find many different treatment regimes here, but it seems to be a case of, try them and see if it works for you. What works for one doesn't always work for another.

    I hope you find a doc who is sympathetic to you and helpful...that seems to be another minefield with our problems. A friend of mine who had FM/CFS told me that when I find a specialist, my first question should be 'do you believe in FM/CFS?'...which gives you some idea of what we are up against. Many have found great doctors though so don't give up...
    We do have a couple of great docs on here, Madwolf and Ace, so you could try addressing questions to them...they are both men too! And both sufferers themselves...
    hugs
    Mary x
  7. layinglow

    layinglow New Member

    Hi Vinnetti,
    Yes I do know males in there 20's with these disorders.
    Although not as frequent, as the female middle age women.
    Many of us have FMS/CFS onsets after severe work schedules. Sleeping Problems are one of the main problems. I vary from staying up later and later, having to fight to try to get some sleep, to being comatose for 12-14 hours. I have both CFS/FMS.
    I too, take Klonopin at nite, and originally it made sleep come much easier (less racing brain), it does not seem to be as great of a sleep aid tool now, but I will continue it. I also often take a dose during the day, for sensory overload. Dr. Cheney has some articles at this site, speaking about the mini-seizure state many fms patients are in. This causes the various symptoms of oversensory stimulation, sleep problems, anxiety, etc. His (and others) theorize that these over firing neurons will soon die, if not quieted, thus the klonopin therapy, which prevents the overfiring. I have very severe myclonic (involuntary) jerking when I am overloaded.

    Sorry to tell you--I don't deal with work. I have had to make a 360 degree life style change in order to function at any level. I work from home, now, when I can, from the computer. Changing my lifestyle, removing stressors, has resulted in going from completely bedridden to a few good hours a day. Well perhaps good is stretching it---hours in which I can function. I too, find Vicodin as the only thing that will relieve my pain.

    Have you been to a FMS/CFS specialists? This has made a great difference for me. The keep up with the latest research, and understand the need for individualized treatment methods for each individual. You can also get a tender point check and diagnosis, which could help you later down the road if work becomes more difficult or impossible. They are trained in the correct location, and applied pressure to the tender points. I didn't think I had them either, until my DX, even though I had the bizarre all over pain you describe. I see a D.O. who uses integrated medicine, prescription meds, supplements, vitamins, alternative treatments etc. We have alleviated quite a few of my symptoms already. My pain is being managed as well. His charges are less than most rheumatologists, and internalists, etc.

    I have started B-12 injections at home, soon to start B-complex injections, and hopefully soon antiviral therapy.

    Hope I have answered a few of your questions. Oh, I would lay off the large doses of tylenol...they don't seem to help fm and your are right worrying about the damage they can do. You might see if you can get a prescription for (Ultram) tramadol---I take the generic for less severe pain, and its usually much easier to get than vicodin. I don't have probs. with this though, thankfully as I have a compassionate, and knowlegdable Doc.
    Best wishes,
    LL
    [This Message was Edited on 05/05/2003]
  8. KristyW

    KristyW New Member

    Hello and welcome to the board. I am a 24 year old single mom of a five year old son. I was diagnoised in June of 2000 with FM. I have actually had it since i was 15. It started with my right shoulder burning,like someone has caught it on fire and it can not be put out. I do not like to take pills at all and viacadon's whoa can't handle those suckers. Work is a pain for me exspecailly in the summer time. I also am always tired and sleep until i have to get up. On Saturdays if i go out with my friends and stay out late there is no hope for me on Sundays. I always tell my co-workers if no one would wake me up, i could sleep for a week straight, that's how i feel. I am sorry you are diagnoised with FM. If you ever need anyone to talk to my email address is in my bio. I hope today is a good day for you.

    Love,
    Kristy W
  9. pgunderson

    pgunderson New Member

    Hi Vinetti,

    I am new to this board also and came across your post. I have constant pain and fatigue at 42. I also have osteoarthritis in my knees which doesn't help much (soon to have total knee replacement on one).

    I have found some relief for the pain taking Calcium with Malic Acid. (about 1200mg per day - 2 tabs). I also find that doing stretching exercises at night helps tone down the pain and helps me to sleep better. I still haven't found anything to totally take away the pain, I wish someone would hurry up.

    Anyway, feel free to email me. Thanks
    Pam
  10. pgunderson

    pgunderson New Member

    Hi Vinetti,

    I am new to this board also and came across your post. I have constant pain and fatigue at 42. I also have osteoarthritis in my knees which doesn't help much (soon to have total knee replacement on one).

    I have found some relief for the pain taking Calcium with Malic Acid. (about 1200mg per day - 2 tabs). I also find that doing stretching exercises at night helps tone down the pain and helps me to sleep better. I still haven't found anything to totally take away the pain, I wish someone would hurry up.

    Anyway, feel free to email me. Thanks
    Pam
  11. pgunderson

    pgunderson New Member

    Hi Vinetti,

    I am new to this board also and came across your post. I have constant pain and fatigue at 42. I also have osteoarthritis in my knees which doesn't help much (soon to have total knee replacement on one).

    I have found some relief for the pain taking Calcium with Malic Acid. (about 1200mg per day - 2 tabs). I also find that doing stretching exercises at night helps tone down the pain and helps me to sleep better. I still haven't found anything to totally take away the pain, I wish someone would hurry up.

    Anyway, feel free to email me. Thanks
    Pam
  12. pgunderson

    pgunderson New Member

    Hi Vinetti,

    I am new to this board also and came across your post. I have constant pain and fatigue at 42. I also have osteoarthritis in my knees which doesn't help much (soon to have total knee replacement on one).

    I have found some relief for the pain taking Calcium with Malic Acid. (about 1200mg per day - 2 tabs). I also find that doing stretching exercises at night helps tone down the pain and helps me to sleep better. I still haven't found anything to totally take away the pain, I wish someone would hurry up.

    Anyway, feel free to email me. Thanks
    Pam