Hi 1 to talk

I can't remember if I introduced myself or not - I shouldn't be kidnapping Linmaries thread but I just wanted to say hi. I am 21 and live in the UK I have full body RSD and have had it for 5 years.

RSD is a very hard disease to get - not only are the symptoms awful but it seems to destroy eveything around you at times as well - relationships, work etc and it is HARD. It is hard losing friends, relatives that don't believe you, not being able to work, do things, see people etc.

Are you under a pain mangement specialist? It sounds like you could benefit from something like a pain mangement course. You sound (justifiably) very angry about what has happened and what the RSD has done to your life - which I can FULLY understand and how it affects your relationships. Do you think that your family would react better if they saw you trying other methods to manage the pain? these courses work on helping you find coping mechanisms to cope with the pain - through medication, meditation, deep breathing, stress relief etc and look at the effect of diet, exercise and pacing. They also look at sleep, stress and lots of other things and how they affect life. They have had some good results - and they might help you cope better, as it sounds like life is really rough for you at the moment.

I really hope you are not offended. I have severe RSD and am very disabled from it so I DO understand how bad this disease is - it's just that all your emails contain such mental pain as well as physical pain (understandably in your situation) that it sounds like something like a pain mangement program or a pain psychologist would be really useful for you.

Love

Frogga xxxxxx

Linmarie... perhaps you could find a counselor who is experienced in pain to help you out??

I know the hopeless, worn out feeling... depressed feeling... I have been there... just sitting on the couch, feeling so worn out, crying my eyes out and feeling like nothing was going even "okay". Things have improved since then, and I do have interest in life. I found that forcing myself to do normal things then brought me back to "life" and wanting to do normal things, until gradually I do things because I actually *want* to do them. Not because I am forcing myself. But for now, I'd suggest you try hard to do something you used to love. Make scrap books, play with clay, make cards, sew (if you are a crafty person); grow a plant- see life! play with children- see some more fun life! Just do something you used to really love. Try it- I did it and it brought me back. Mom made me, and I hated it at first... I just didn't want to, couldn't do what I used to loved... then I learned again!

I hope things improve! I just want you to know that I am sending you loads and loads of (((HUGE HUGS)))

I am sure that certain situations don't make the pain any better. I hope things improve in that way too.

P.S. These types of support groups are awesome for RSD... there are others too. Keep coming to them-- they do help!

Thank you so much for the support. It really helped me to vent. I'm still upset but the tears have stopped. I try so hard not to get emotionally upset because it increases the pain but this really hurt me. Yes, I'm physically feeling it, too.
I haven't been on the board for awhile. I'll check in every few days and read some posts and then hurt so much that I don't even reply to any. I'm sorry I haven't been supportive.
Desi, I'm sorry to hear that you are missing out so much on your grandbaby. I only have one grandchild and he means the world to me. I wish our children could understand what it feels like to me a grandma & how much joy it gives us. I hope you can babysit soon.
Frogga, I need to catch up on what you've been up to. I enjoy your posts so much & really admire how upbeat you are. You always give me a smile.
Tommie, I don't think I've read any of your posts. I look forward to reading them. Welcome to the board.
1 to talk, I feel your pain. That's how I was feeling when I wrote this morning. RSD truly changes our lives for the worst. I've been so beat up by it. Frogga gave you some good advice regarding the pain management and therapist. I do all of that but some days it just doesn't help me (no offense, Frogga). Vent to me all you want. I understand. Have you tried ducosate for the constipation? & welcome to the board.
Thanks again & even when I'm not on the board I'm thinking & praying for you all.
Linmarie

IHH,
Good advice. You are so smart, especially for your age. I guess I spend so much time worrying about what I need to do that I don't think about what I would like to do. I don't get much of the stuff I "need" to do done, so I think I'll just change some focus to what I "want" to do. My therapist was actually talking to me about this last week.
How are you? I need to catch up on your posts. You are in my prayers.
Linmarie

This thing will make big changes in your life.

I confess I've pushed some of my friends away in the hopes they are less hurt if worse comes to worse. It was probably a poor idea and it's not my job to protect them anyway.

One thing is certain; you have to enjoy life to the degree you can. Get a hobby or find something to do.