Young male with FM in DC area help

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by rfarwell5, Sep 22, 2008.

  1. rfarwell5

    rfarwell5 New Member

    Hi everybody. I'm a 23 year old male living in the Washington D.C. area. I've been battling FM for over 5 years now. On top of all of the pain, what seems to hurt the most is how alone I feel. The few people in my life have no comprehension of fibromyalgia or the many ailments that accompany it.

    I try my hardest to live one day at a time, but it is so exhausting. My family doesn't talk to me because they've admitted that they feel helpless in easing my suffering and/or don't understand what I'm going through.

    Also, I feel even more alone being a male with FM - on top of being a gay male. I often wonder if there is anybody out there in the whole planet that is able to relate to me!

    I really think I would benefit from a support group, but I would feel very out of place (no offense) in a group of all middle-aged women. Anybody out there?
    [This Message was Edited on 09/23/2008]
  2. vannafeelbettr

    vannafeelbettr New Member


    Sorry to hear of your suffering. The message boards here are not only a great place to connect with others, but you can learn so much here as well. I'm not a middle-aged woman myself (unless you consider someone in her 30's middle-aged) but I've seen plenty a 20 somethings who have this disease as well here. Why don't you put up a post to ask who is is their 20's?? I've seen that thread title on here within the month. But, word to the wise, you shouldn't rule out the wisdom the middle (and older) women (and men) have that could help you TREMENDOUSLY with your coping. Also, it doesn't matter if you are gay, straight, bi, or crooked. You are human.... a disease is a disease and does not discriminate.

    I hope you find what you are looking for and welcome aboard!!!
  3. Rafiki

    Rafiki New Member

    men here, there are gay people here, there are young people here.

    Yes, there are also middle-aged women here and we'll probably all try to help you find other young, gay men with FM because we're all pretty helpful.

    Don't be discouraged if you don't find members of your demographic right away. Maybe also look for the others in their 20s and the other men.

    This is a very diverse board: gay, straight, old, young... nobody need feel out of place.

    Peace out,
    Rafiki

    PS Vannafeelbetter: Uhm, when I was 23, I think I thought people in their 30s were middle aged! For sure I thought you shouldn't trust them :~)

  4. Janalynn

    Janalynn New Member

    I'm so glad you found your way here! As others have mentioned, the feelings we all share know no age boundaries. I do understand what you're saying, but you might get a lot more out of us "older" women. Heck I still feel like I'm 25 sometimes. Age is such a strange thing. (That's a whole 'nother subject!!)

    Even at my age - mid 40's, I have felt very alone. Having an outlet such as this place is wonderful!! You will soon discover you are definitely NOT alone. We share so many common feelings and emotions. It's quite refreshing. We pick each other up when we're down- sometimes we commiserate with each other. The main thing is that we're all in this battle together.

    I happen to have a very supportive family and husband. Yes I'm extremely fortunate. I still feel alone because really unless they're living it, no one else quite understands it. How can they - we don't!

    If you have a few close friends that you feel you can talk to - do. Don't expect them to be able to help you and let them know that. Sometimes just being able to say "no" when you need to decline an invitation and have them understand without further explanation is incredibly helpful.

    I truly believe that most people do not know what to do or say. It must get old to hear about how I feel. I'm surprised people still call me truthfully. My best friend rarely asks me how I feel. We RARELY talk about my fibro. On one hand it's good because I can feel normal when we talk, on the other hand, I've had hurt feelings and wish she'd realize that it's a huge part of my life. It's like the big elephant in the room that she's trying to ignore.

    Support is critical. It doesn't matter where it comes from. I think the emotional toll is just as difficult as the physical pain.

    Funny I was just talking to my husband about this, this morning- I really don't look far into the future. I still have my dreams and never let my Fibro get in the way. Ever.
    Not in my head anyway. I take one day at a time. ONE DAY.
    We still talk about our second home we want someday when we're old enough (and have enough money) to retire, on a golf course, where we can walk through the little town together, shop, have friends over etc. My pain doesn't factor into those dreams. If it does, I'll manage it like I do today.

    We were all 23. I suspect I've had Fibro actually since I was at least 23, but that's the specific age that I remember seeing the dr's for my knee/leg pain. Since then, I got married, I've had two babies, have moved across the country, had many "important' jobs and have had quite a nice life.

    I was only diagnosed a little over a year ago. The last two years have been the toughest to where I now need pain medication to sometimes get through the day. If I hadn't found this website shortly after diagnosis (or the day of) I don't know where I'd be.

    When you say your family won't talk to you because they feel helpless...they won't talk to you ??? Let them know you still need them, more now than ever. You don't need them to fix you, just to be there, unconditionally. Remember it IS hard for some people to listen and not be able to help. It can also be a downer for some people to listen to someone who complains about how they're feeling. Sad but realistic.

    Ask your doctor about support groups in your area - call rheumatologists in your area as well, they may know of some. You never know what connections you may make with people. (people know other people etc.) I bet you won't even see their age.

    In the meantime, please keep posting here! We all learn from each other- so jump in and answer others posts with your own experiences and opinions!

    We don't care if you're gay/straight or have a big hump on your back. We've all learned what's important in people.
    Look forward to hearing more from you!
    Janalynn
  5. rfarwell5

    rfarwell5 New Member

    I just wanted to say thank you to everyone that replied to my initial post from just a few hours ago. I hope I didn't offend anyone - on second read my post sounds like it belongs in the personals section of the newspaper! I guess that it's only natural to want to have somebody my age/gender to relate to (as sexist/prejudice as that sounds).

    I especially thank Janalynn for her remarks - they really hit the nail on the head. I have tried to explain to the few friends I have down here in DC what I'm going through, because all of my family lives in upstate New York. They act like they understand, but I can see in their eyes that they don't - and I don't blame them because I certainly had no comprehension of this disease 5 years ago. Then, it's like Janalynn said, it becomes the elephant in the room that nobody brings up or acknowledges, which hurts because it's such a HUGE part of my life unfortunately.

    My family isn't as cold as I made them out to be. I used to lean on my mom for support but in recent months as my condition has worsened, she has admitted to me that she has no idea how to help me (usually crying on the phone). She used to be my "rock," and I've seen it crumble before me. My father does not engage me in conversation - he has never been the "talking" type. Ever since I came out and/or started having problems with my health he sort of "gave up." We basically have no relationship, as painful as that is to write.

    I want very much to experience love and companionship but unfortunately, whether it's a result of my chronic pain, the years of numerous antidepressants, or a combination of both, I have no sex drive. It's hard to dream of my future and kids and everything if I can't even have a sexual relationship with anybody.

    I don't want to be a "Debbie downer" as some of my "friends" have called me, but I guess I'm just using this forum to get some stuff off my chest. Thanks for listening
  6. goldengoddess

    goldengoddess New Member

    ... and the memories are not all that happy!! I divorced my cheatin', gay ass husband (and I mean I caught him in the gay bar with his lips locked on his "best friend"). Then I took a bad turn, ended one night (after an assult on a lover after I emptied a bottle of vodka) in jail and the following night at the end of a razor... then four days in the psych ward all to find out what I already knew: I was bipolar!

    I spent the rest of my 20's trying to get stable and put my life together. 29 greeted me with a string of horrible heath issues and my 30's welcomed in this wonderful era of FM!

    But I firmly believe that everything happens for a reason. I am a stronger person now at 32 for having gone through all that sh** in my 20's.

    Moral of the story: there may not be a pot of gold at the end of the rainbow, but you'll be able to deal with whatever is there after you've made the trek!

    Good luck hon!!!
  7. hugs4evry1

    hugs4evry1 New Member

    But you've probably just found about 300 extra Moms....

    Also try the Chit Chat board here, there are two wonderful gay men that I know of who frequent the board over there. Both have FM.....

    Hugs,

    Nancy
  8. bikrgrl

    bikrgrl New Member

    i'm not middle aged.
    I am 28 and have had fibro for at least 8 years now. I do feel however, that i had in part all of my life.
    No worries there are men here, as well as gay men.
    You are not alone.
    Please feel free to ask whatever you like, we'll be glad to help.
    I too understand the feeling of being very alone.
    Lots of love and gentle hugs, you will get through this.
  9. Mikie

    Mikie Moderator

    To not feel alone is to not limit yourself to only being involved with a narrow set of people. Of course, you might feel more comfortable around other gay men with FMS but getting outside one's comfort zone makes for growth and allows one to find some surprising support and friendship in unexpected areas.

    I took no offense but since I am neither male nor gay, and am a middle-aged woman, I do not fit the criteria in your post. I wish you good luck in finding people with whom you feel more comfortable.

    Love, Mikie
  10. charlenef

    charlenef New Member

    hey who are you calling middles aged? lol there are men and young people also hugs charlene
  11. lrning2cope

    lrning2cope New Member

    the thing that matters is that you are a human being. With that criteria , I think we all fit in together !

    I understand wanting someone in your own lifestyle and age because then you can see how they cope within their lives.The thing is , as far as coping , we all need help with that. For me , I like this board because age and gender and ethnic and religious background don't matter.

    You know what I see most here ? Love. Support . Caring. Empathy. A shoulder to cry ( and dump ) on.

    Plus , if you stay here , maybe another young gay male will show up hoping someone like you is here. Then you can be the role model !


    You are most welcome here !

    Holly
  12. lgp

    lgp Well-Known Member

    I am so glad you found this board. Welcome!!

    Even though I am a woman in my forties, I hope you'll take a moment and read my post. Many of us were only diagnosed later in life, but carried this 'illness without a name' for many years. Many fibro sufferers can relate to you because they felt poorly back in the day as well. Also, for all of us, young and old, I have often referred to fibro as 'the lonliest disease' in many of my posts. Even though many of us are older, believe me, we feel your pain and isolation.

    I guarantee you, there are other people your age, perhaps gay, perhaps male, with fibromyalgia. I would give the support group a shot anyway. The worst that could happen is you won't go back, but perhaps you may find more comfort there than you would imagine. That being said, please know that we are always here to listen, respond and be your friend. We all live one day at a time, not knowing what pain or discomfort tomorrow will bring, so we get it. Come here for advise, or to vent, or just to share information.

    The one element that you will have to adjust to is the fact that most people just don't get this. You can try and inform and educate those closest to you. If you feel like you're hitting a brick wall with them, don't sweat it and just move on. That's whey we're here for you. We so get it.

    Peace--Laura


    [This Message was Edited on 09/23/2008]
  13. rfarwell5

    rfarwell5 New Member

    I appreciate and thank <b>everyone</b> who has left me a message. I hope to find a support group in DC. I have met many wonderful people online, and I'm thankful we have such a great tool to connect to millions of people around the world. However, it would be nice to meet someone face-to-face with fibro. I'm not sure there is an active support group in DC or northern Virginia. I probably should look harder.
  14. Lazy_Susan

    Lazy_Susan New Member

    Not sure what sexual orientation has to do with it or age for that matter. We who have it all suffer equally. I just wanted to say I know how you feel--to some extent--in that I've been told by two family members to stop exaggerating. Who knows what the others are really thinking. The thing is, I don't tell them half of what I'm feeling. I hide it well. So when I do let it show, it's bad. I think if you have to be in a support group with middle-aged women, you'll quickly lose that out-of-place feeling when they and you start talking. And you're not the only male with fibro so what makes you think you'll be the only male there? Chances are, you won't be. I wish you the best and hope you find a good support system. I'm told it makes all the difference. :)
  15. ericdinbstn

    ericdinbstn New Member

    I'm another gay male and have FM. Even though I'm not 23 I can relate to what you're feeling. It's very hard to have a disease that many haven't heard about and don't know what to do or say to help. I know what it's like, as all of us on here do, about living with the constant pain day in and day out hoping for even a moment's relief. I try and get through my work days and every once in a while try for a social life. I cooked dinner tonight for my partner and a friend and was in so much pain and so tired I couldn't enjoy the meal (let alone eat much of it) and had to push through to just talk with my friend, and my partner and just have an evening of it.

    I think a support group would be good for you. Keep coming here there's a lot of support on these boards. Know you're not alone and there are many out there, myself included, who would be very happy to try and give you some of the support you need.

    Gentle hugs,

    Eric
  16. Sergei0001

    Sergei0001 New Member

    Hi, This is from a middle aged gay man with CFS. You certainly are not alone! It's been my experience, though, and I've lived in nyc and now san francisco, that CFS and FM are invisible in the gay community. Part of that is because so much energy is taken up by dealing the the AIDS crisis that diseases that are invisible and not terminal just don't seem to seem that important. Most of my friends are sympathetic to my illness but then no one's ever offered to help in ways I could use, e.g., clean the apartment or such.

    I've gotten very good at 'arguing' -- if I've the energy -- the seriousness of my disability and my suffering and I don't tolerate being dismissed my anyone. But then I'm a bit older so I've got some life experience under my belt.

    I've met very few gay men with CFS or FM but enough to know we're out there, for better or worse.

    And, as some here have said, be open to support and friendship from any good person. I've made some great supportive women friends since I became ill.

    Re: antidepressants and sex drive. It is a problem. Have you tried Wellbutrin or one of the older anti depressants, such as remeron or doxepin? They don't effect sex drive like the newer meds do. Unfortunately, I take lyrica for sleep (it helps some with pain, too) and that does effect sex drive.

    Also, there's a smallish Yahoo Group you might want to check out: Gay_Chronic_Fatigue_Group -- it has men and women with CFS and/or FM.

    Hang in there and give your family time to come around. It is very hard to know what to say to people who are sick with an illness for which there's no easy solution. They need time to learn about it, and be open to the fact they still love you even if they're tongue tied. Think of how to 'train' them to be helpful, i.e., think out what you'd like them to say or do and teach them to do it. Maybe your father is too difficult -- father's are like that -- but it sounds like your mom is trainable and still loves you. Same with your friends.

    As to the future: don't think too far ahead or you'll just be miserable. Take it an hour, a day, a week at a time and plan it what you can do and enjoy. As someone on the board wrote, this may all take you somewhere good and so be open to it (even if it hurts like hell on the way),

    mike
  17. FMPartnerColorado

    FMPartnerColorado New Member

    Eric, my partner of almost 11 years has FM. I help him as much as I can, and I have educated myself regarding his symptoms, treatment plans, and as much as I can get my hands on. It's 3am and I'm up on the computer trying to find support for me as his caregiver. Is there anyone out there for us to talk to? My sister also has FM, but her husband has a different relationship with her than I have with my partner. He can't help me.

    Thanks

    Rick
  18. FMPartnerColorado

    FMPartnerColorado New Member

    I am up at 3am on the computer trying to find support. We may feel that we need a group that is unique to our demographic (gay men), but I sense we will find support regardless. My partner has FM, and I have educated myself regarding symptoms, treatments, etc. Part of why it is important to talk to other men (gay or otherwise) with FM is the fact that so few men have FM. Thankfully FM is gaining recognition as being "not just a woman thing". But, as I have seen from your posts, don't hesitate to talk to someone who is older (or younger) and is female or a heterosexual male. Any port in a storm.

    Good luck in your journey. You are stronger than you can imagine!

    Rick
  19. FMPartnerColorado

    FMPartnerColorado New Member

    Mike:
    Thanks for posting. My partner of 11 years has FM, and have found much what you have. When they find out you "have something" they are so relieved that it is not HIV, but do little to understand FM. What I am looking for is support for partners of FM patients. I feel like such a jerk, but FM affects us too. We see those we love in chronic pain, with low to no energy. My sister has FM, but my brother in law does not seem to be bothered by it, so he is no help. I want to be more effective as a caregiver, but I want to talk to someone who understands my side. Does that make me a douche-bag?

    Thanks

    Rick
  20. luigi21

    luigi21 Member

    I know what you mean though it was my initial thought when i went to my 1st meeting. Howeveralthough the majority of people can be middle aged women i believe because ive observed it younger people or men do turn up and feel awkward and dont come back. Now i was the youngest in my first meeting and i was 32, took 2 years to get a diagnosis but now from looking at my medical records they believe i had it pre- existing since my teenage years. And became full blown after rta. However there were 3 men at my first mtg one guy was gay i am a woman now 38 and i get along with everyone.

    Over the last two years we've had younger members join our youngest is 19 male. He still comes to years later. We set up another group in a diffetent area that meeting is even more diverse with age, race and sexual orientation. 5 straight men, 2 gay, straight woman of all ages and gay women. See fibro isnt prejudicedin its choice. Its good to meet up to outside the group and ypu gravatate to who you get along with the most i get on most with 3 of the woman and 2 of the men, one gay. We sure are gay aswell because we have a right laugh when togethet at the horrendous fibro stories we share any normal person looking on would think we were nuts at some of the stuff we share and laugh at. And if you find you are the only young person there it wont stay that way, for me i remember how i felt when i first joined so i make the effort to go speak with them. I mean you've already got one thing in common. Doing this brings those people back to the meetings.

    As a community we feel issolated from others because of this condition. Because of that you really need eachother here. If you dont go to a meeting and i hope you do give it a go. Theres always here, theres some great, funny and compassionate people on these boards.


    Heres rooting for you

    katherine x