After my run of illnesses and surgeries and going through this for 20 years, I am still asking this at times. I was so frustrated a couple of weeks ago, I told my Dr. that the damn Drs. think we should just stay like we are. It seems like it seems normal to them.

Of course, he took it to heart and I had to apologize to him. He has worked his *** off to save my life and take care of me when the 100 of other Drs. I have seen have said live with it all. I guess like Vicc said, I don't have it in me to give up.

Depression does come with RSD. I think everyone dealing with RSD deals with depression. I have an implant in me for depression and even with it on, I get depressed even more when my pain level is at it's highest. I stood by the fridge last week and thought I should just kill myself.

If I weren't in councelling, I wouldn't be here today. I do think people need help to deal with the pain levels we suffer. On those days when the pain is above reproach, we need it more.

I do hope you find some help in dealing with the depression of this. Yes we have our families. I have a great one, yes we have our friends, I'm blessed with them too, but we still have the most unbearable pain it seems that can be put on anyone. They can't help us with that part. As I said, we need help to talk about it and try to get through it.

Ada

I would like to thank all of you for your replies/suggestions/comments.

I've been "out of commission" for about a week. Sinus infection, inner ear troubles, major fatigue.

I'm on so many meds right now I almost can't keep them straight.

EVen on days when I'm feeling jolly, I wonder why I had to get stuck with this RSD.

I saw my pain doc yesterday, and he told me that he hopes that I will be one of the lucky ones to not have this RSD go full blown and spread, because most do. I must have had quite a look on my face, because then he said "Well, you want me to be honest with you, don't you?"

I have never been lucky with anything in my life, so that probably means my RSD will migrate to other body parts.

Family and friends sometimes can help, but I still believe that the only people who can truly be supportive are ones who battle with the same conditions. "Been there, done that" type of stuff, ya know.

And I can't seem to find anyone around me, relative or co-worker, who has this trouble. And there is an area chapter of RSD in town, but guess what? They meet during the day when I am at work. How dare they not do an evening meeting!!!!!

My family is basically ignorant when it comes to this stuff, all they concern themselves with is if I'm able to put food on the table or do the laundry! I can get more compassion and/or support from a co-worker or a stranger.
I still have not accepted the fact that I have this "disease" or "condition" or "curse" yet. Guess I seem to be stuck in the denial phase of things. Ah, well. This, too, shall pass.

Again, thanks for the posts. I appreciate them very much.

Hey. Im sorry you feel like crap about all of this

My english teacher gave me a really good statement (we had poetry assignment thing, one poem was on rsd and frustration and stuff). on the back, he wrote that he has walked down the same path im walking down but it gets easier. although it may seem to be a bad thing, it can turn out to be a good thing. something good may come out of it. although it is hard right now, try to see it as such.
at first i was like dude...yeah. ok. but i really started to think about that statement a lot. i came to realise that even though rsd sucks, there is a reason for everything. and that was the point i believe my teacher was trying to get across to me. we had a journal assignment thing like a month after the poems and the question was "if we could change just one thing in the world what would it be? what about to ourselves?" and everyone was like "war! hunger! save the chinchillas (lol)!" and teacher was like...ok. then i shared and said nothing because everything happens for a reason, even if the reason seems pointless right now. it could save our life someday. people in the class were like hu? but my teacher seemed really happy for me. he knew exactly what i was talking about and seemed happy that i absorbed his comment. some people were making dumb responses to my statement but he said it goes a little deeper than that. then he just nodded gently to me.

i hope this helps. i also keep a journal w/ some of my bffs. we write about anything in it and just pass it around. we also like compliment each other. reading what they write about me helps a ton. my teachers are really really good about it as well. two of them are like experts at telling when im having a really awful day. but im allowed to lay my head down and stuff. i got my seat moved to the couch in my history class so i get to lay down most of the time. they listen to me a lot as well.

hugs

nikki

Since that group meets only in the daytime, my thought would be to call up the leader and see if she is willing to talk to you by phone and also ask for the names of people in the area that have the RSD and call them up and talk to them for support for you and them.

My experience with a group is that it's hard for them to even go to meetings. Some meetings in bigger cities might make it due to being so many members. We had a group here for awhile but our area isn't that big and the leader wasn't wanting to even have it half the time. I have met a lot of RSD people around here though. I have one that lives 3 doors up from me. I have known her for years before she got the RSD. I know the others from the group. RSD is so rare that it is hard to meet people with it. After the group broke up we went our own ways but I still hear and see some of them at times. Most don't get out much. i met one when I got my hair cut once. The beautician had a friend with it and when she found out I had it, she would schedule our appointments around the same time.

Also you might put an ad in the paper that you have RSD and that you are looking for people to share their experience with you. They have done that here.

As I said though, what I have found is that it keeps people so homebound that they can't get to know each other much anyway.

Nikki is right about what it brings into our lives and changes. I get very frustrated with mine but I have came out with some great Drs. due to it and friends that really care and know what shape I am in. We have also found each other through these forums and a lot of us have bonded and become the best of friends. Several of us talk on the phone with each other.

It sure isn't easy what we are going through and I do know I am farther along then you most likely are in getting into remission but I know you will get there in time and find the reason you ended up with this. One of the greatest blessings in my case is my Dr. and his office staff. They call me at home to check on me and talk to me to make sure I am doing ok. Susan, my daughter is my caregiver so I see her a lot, that makes it a blessing too.



I hope you start finding some better days soon. Don't give up.

Ada