Hi, My name is

[Guest guest]

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.

[Guest guest]

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!

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[Guest guest]

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.

-

[Guest guest]

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:

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[Guest guest]

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

[Guest guest]

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.

[Guest guest]

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

[Guest guest]

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.