Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi to everyone. My name is and I'm new to the group. I'm 24 years old and live in Indiana. I am so happy to have found this site. I've been searching for online places to go for support and understanding of chronic pain. I don't even like admitting to having it (chronic pain), but I've been dealing w/ fibromyalgia since 2001. When the pain gets bad, it's obviously hard to ignore. What's worse is not having anyone to talk to about it. How do you go about educating your friends and family w/o them thinking you want attention or pity, let alone get them to believe you are truly in pain when you look perfectly healthy? I have so much I want to get off my chest and talk about, but I suppose I should stick to an introduction. I work full time and take evening classes 3 nights a week; therefore I am very busy, not to mention the boyfriend of 5 months that I spend all my " off " time w/. So far he has been very understanding and as helpful as I could expect him to be (which is pretty helpful). I don't think he knows the extent of my pain or how it holds me back from certain enjoyment and activities, as well as responsibilities. Most of the time I don't express how much I really hurt. I have such a hard time communicating, expressing, and educating on my condition, to him, and my family and friends. I must say, as happy as I am to have found this group, did any of you feel a little weird when you joined, as if you didn't really belong? I think it's b/c I still try to think of myself as a normal person, not to imply that anyone here is not normal, but I'm sure you know what I mean. Anyhow, thanks for taking the time to get to know a little about me. I hope to get to know a little more about each of you. Have a good night. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Welcome to the group. Yes I felt a bit uneasy when I first joined the group. I felt as if I were joining AA or something: I'm Kaylene and I have Fibromyalgia etc. It didn't have anything to do with the people here nor the format. I am an intensely private person and find it very difficult to trust anyone about anything. Now that I have been a part of this group for about a year I have found that I don't know how I managed without the kindness and also the kick in the pants I need to keep moving and trying etc. Kaylene >I must say, as happy as I am to have found this group, did any of >you feel a little weird when you joined, as if you didn't really >belong? I think it's b/c I still try to think of myself as a normal >person, not to imply that anyone here is not normal, but I'm sure >you know what I mean. > > > > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Exactly! Thanks for the input Kaylene. I'm so glad someone understands what I ment and how I feel. As I've been reading other discussions and introductions I'm seeing how helpful the group can be. I'm looking forward to having some understanding from people who know what it's like. Thanks. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi I'm Dave and I joined not to long ago and the people in this group are great, I have AS and been dealing with chronic pain for the last 18 years and I felt the same way as you it felt like you are all alone but your not there are more of us then you know. Chronic pain is hard for people to understand if they don't have to deal with it on a daily basses. I had nobody to talk to eather other than doctors but in a way thay don't even know what crohronic pain feels like. Then I found this group and believe me thay help me alot and thay are always there. Any time you need to talk I'm just about always online you can IM me at yahoo sign on (davidquaife) your in my prayers Dave ry wrote: Hi to everyone. Know someone who could benefit from our list? Send our direct sign-up URL: http://www.yahoogroups.com/subscribe.cgi/chronic_pain or write us at: chronic_pain-listowner Manage your subscription with the following email addresses: chronic_pain-owner - Sends email to the list owners chronic_pain-subscribe - Subscribe to the list through email chronic_pain-unsubscribe - Unsubscribe from the list chronic_pain-normal - Switch your subscription to normal chronic_pain-digest - Switch your subscription to digest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Welcome ! My name is Raven, and I've had chronic migraines all-day-every-day for 12.5 years. Your email reminded me so much of myself... As I've mentioned before, I hate telling people I'm in pain. Thankfully, both my roommate and my boyfriend are the observant types who know my subtle signals... but generally speaking, most of my family and friends don't. I've found the best way to handle educating them is a " family forum. " I invited my family and closest friends over for a dinner party. During the course of the conversation, I just laid out the law bluntly and simply. This is my situation, this is what I need, this is what I'd appreciate, and this is what I'd prefer you didn't do on a daily basis about it. It gave me the ease of getting it out all at once, and gave them the benefit of having an open forum. Even though I specified that what I *really* didn't want was a bunch of mother-hens who treat me like an invalid...I made it clear that during the forum, they could react however they wanted to (even including the ways I asked them not to) so they could get it out of their systems. It worked for the most part...granted, it's not foolproof and some people will never understand. But it also helped to ease my stress levels about it (and my then bf's stress level too, as he knew something wasn't right but didn't know what until the family forum). Maybe this is something you'd consider trying? As to whether I felt as if I didn't belong here when I joined...In a way, yes. I felt strange, like maybe people would see my pain as being too minor to bother with (after all, I can still work part time, still have somewhat of a social life, still have mobility enough to take my puppy on hikes, etc.). But after the first few responses to my original post, I breathed a sigh of relief...no one pulled an " ouch contest, " and everyone has been as warm and supportive as can be. I hope you find your own comfort here.... Raven Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Thanks Dave. I really appreciate that. Reading about all the conditions many people have in this group, I don't know how they do it. I am really starting to feel like part of another community w/ everyone's support and understanding. It's nice to meet you and I look forward to speaking again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Hi (twobmary), Welcome to the group! I can relate to what you wrote. I also got fibromyalgia young, when I was 24. Now, I am 33. Originally, fibromyalgia was really my first health or pain problem. Now, I have more - mostly as the result of 2 bad car accidents. I understand what you mean about not liking admitting to having chronic pain and not having anyone to talk to about it. When all I had was the fibromyalgia, I was working full-time and looked " normal " so I often would just try to be " normal " and not tell people about it. I didn't want to be treated differently or to have people think I was looking for pity. But I also wished someone would understand. I still thought of myself as a normal person, too, when all I had was fibromyalgia. I had really bad pains in my arms, in part because I used a computer most of the day for work. My fibromyalgia actually started when I was using a computer/mainly the mouse, 10-11 hours a day to finish up some major projects at work. The computer was not set up at the right height for me and I also had neck pain with it and shooting pains from my neck down my arms along my ulnar nerves into my pinkies and fingers next to the pinkies. Sometimes, I wished my arms were cut off or in casts or something, so people would realize how bad the pain was or that I couldn't use my arms anymore for the rest of the day when my pain was so bad. Because without some outer sign, many doctors, friends, and relatives didn't realize how bad my pain was and then I got the feeling that they thought I was faking or seeking attention or pity, which I wasn't. I just wanted some help and understanding. Most of the time, I still don't express how much I hurt, but now after the accidents and other problems, I always hurt so much in so many areas of my body. If I ever expressed it all, it would feel like all I was doing was talking about my pain all the time, which gets old fast, and boring, and depressing. What does frusterate me though, is sometimes my mom will say something about that she's having a bad headache or something and I might say, I'm having a terrible headache, too. (For quite a while now, I can't remember a day when I didn't have a headache.) Then, she gets mad at me and says that whenever she has something wrong with her, I seem to say I have the same thing. I said well, I have so much pain all the time in so many areas of my body, I don't always say it, but if you mention something, I may say the same thing is bothering me, too, because I am trying to relate to you, but I've been having that same pain and many others all the time or a lot, I just don't always say it. I can't physically do most of the things my mom can and I don't always have a lot to talk about and I tell her, when she talks about her pain and if I'm having similar pain, that is something we have in common, so I am just trying to share and talk about something we have in common. She still gets mad at me for talking about pain I have in the same body parts as her. If I ever initiate talking about my pain (like when she hasn't talked about hers), she seems to get frusterated with me or think I am having a pity party or something, and I get the impression she has no concept of how bad my pain is, so I can't win - no matter which of us brings up pain first. Thankfully, she's usually healthy, but I swear, even on days when she's had outpatient surgery - " bad days " for her, she can do more in a day than I can on my " good days " . So she really does not understand my bad days. I wish she understood and was more accepting of me. Anyway, I just wanted to say welcome to the group and I'd be glad to communicate with you if you want. For me, at the beginning when I got fibromyalgia, it seemed that most people with fibromyalgia were much older than me and people didn't seem to understand how I could have it so young. So, I just wanted you to know, you're not the only one that got it young and I'm here if you ever want to write. Take care! Mara lakelover125 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi , Welcome to the group. I have FM as well. I was diagnosed in 96. Do you have any books on FM? There are some good ones out there, and it would be helpful in educating your family and boyfriend also. You will find alot of informative members here who also have FM. This group has been a life saver for me over the years. I look forward to getting to know you. Kathleen in Calif. Quote Link to comment Share on other sites More sharing options...
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