looking for rsd friends

[lolo217]

hello al! i am a newbie at this, have rsd in rt wrist. i also am having some issues with the website. after i logon it says no new messages but i did find replies? i dont get it, dont know what a pm message is? whats a tag do? id like to hear your story and what you do that helps. god bless and best whishes, id love to hear from you.

[Sandy Shores]

Hi there. I too am new to RSD, diagnosed late spring of this year. It's been a hard road, of course because this is a terrible disease, but also because of the lonliness and lack of support that I've faced from having something so few have ever heard of. I'd love to share stories, thaughts and information and will try to figure out how to send you a PM which I believe means "Private Message". Hope you get it! Sandy.

[stressedout]

Hi,
Sorry we have to be here. I have RSD in my left hand up my forearm. It's been 4 long yrs now. I think many of us are lonely at some point. Nobosy understands what we go through. My own family doesn't get it. My 17 yr old daughter has been my best support, even over my husband. I had a spinal cord stimulator implanted a yr and a half ago and it relieves up to 70% of my pain on a good day. Still have some bad days but I try to stay positive, learning "Mindfullness" has helped also (Breathing and relaxation). I still am on Lyrica, cymbalta, mobic and flexeril. Gained 40lbs that I just can't seem to get off. Grr.

Welcome

Originally Posted by lolo217

hello al! i am a newbie at this, have rsd in rt wrist. i also am having some issues with the website. after i logon it says no new messages but i did find replies? i dont get it, dont know what a pm message is? whats a tag do? id like to hear your story and what you do that helps. god bless and best whishes, id love to hear from you.

[CWilhite]

Originally Posted by lolo217

hello al! i am a newbie at this, have rsd in rt wrist. i also am having some issues with the website. after i logon it says no new messages but i did find replies? i dont get it, dont know what a pm message is? whats a tag do? id like to hear your story and what you do that helps. god bless and best whishes, id love to hear from you.

Hi, I'm also new to this site. I have been dealing with RSD in my left leg for two years now. It's really a tough thing to have to deal with, especially if you don't have a strong support system behind you. I have been blessed with a great family to support me during this time but you're all absolutely right, it can be a very lonely disease to cope with..people who haven't had to deal with those sleepless nights due to intense pain, the heat like where ever you're affected is pressed up against a stove and that overwhelming feeling of little razors slicing at your skin, really don't understand what it's like. It would be nice to have people who know what I'm going through to talk to.

[Nanc]

Hello All! I am sorry that you guys are having to deal with this horrible monster. I came to this site in Jan 2011, I lurked for a long time before I finally jumped in. I came here for two reasons - support and researching my final option of spinal cord stimulators. I found what I was looking for and had two SCS implanted last year. I think you will like it here.

Lolo - PM is a private message, just between you and the recipient). You guys are welcome to PM me if you want to (top, right of your screen - see Private Messages under your name, click there and you should find your way thru). I have had RSD for 21 years, I am in no way an authority on the subject, because everyone is different in their symptoms and treatment results. I can only share my experiences and offer support.

Nanc

[alt1268]

[lolo, Welcome to neurotalk,
pm is private message. Tags are to show possible forums the question is linked to. QUOTE=lolo217;915888]hello al! i am a newbie at this, have rsd in rt wrist. i also am having some issues with the website. after i logon it says no new messages but i did find replies? i dont get it, dont know what a pm message is? whats a tag do? id like to hear your story and what you do that helps. god bless and best whishes, id love to hear from you.[/quote]

[pam potter]

Originally Posted by CWilhite

Hi, I'm also new to this site. I have been dealing with RSD in my left leg for two years now. It's really a tough thing to have to deal with, especially if you don't have a strong support system behind you. I have been blessed with a great family to support me during this time but you're all absolutely right, it can be a very lonely disease to cope with..people who haven't had to deal with those sleepless nights due to intense pain, the heat like where ever you're affected is pressed up against a stove and that overwhelming feeling of little razors slicing at your skin, really don't understand what it's like. It would be nice to have people who know what I'm going through to talk to.

I to have RSD in my left foot 2 yrs of pain with no words to put to. I have been barefooted for 2 yrs since I can't get a sock or shoe on my left foot. I can only walk on my heel so my standing only last 20mins on a good day. My family don't understand I am me but stand me up or walk I am dieing. I am sick of the pain and lonlyness . My life went from 80miles a hour to snail mode . I am 50 years old and somedays I feel like I just sat and watch time leave me behind. I have no one to talk to and weeks go by before I see anyone. I have had n medical hope Drs, give me pills and say I am so sorry. I would be happy just to wear a sock on my foot then I would at lest look partly normal. So many people ask me if my ffot is broke. I now just say yes. I feel so useless . I would love to know if there is some hope of ever wearing a shoe again