Anyone living with RSD (Reflex Sympathetic Dystrophy)?

How do you deal with it? How do you feel emotionally every day? Is there no cure at all?

Thanks for the support group. Actually, it's not me. It's a teenage girl at my church. She can't go to school anymore because of this and it's her senior year. I just wanted to learn more about it and educate myself on what she might be going through. Everything I've read on the internet is about people whose families and friends have left them to deal with this on their own because they all think it's just in your head. I think it's actually being validated as a real disease, but I'm wondering if it's curable, or if just the symptoms are treated.

this condition is definitely not in the persons head. it causes
an intense burning pain in the affected areas. along withthat you can feel a dull penetrating ache, a sense of horrific cold, zingers that feel like hornet stings or even a sense that something is crawling on you. pain can be triggered by even the lightest touch, rain can feel like daggers and even air passing over your skin can cause extreme pain. IT'S VERY REAL. as of yet there is no cure and finding a treatment can be trial and area. people with rsd often experience depression, a side affect of dealing with constant pain. they may also have difficulty sleeping. they may develop skin ulcers and sores over the affected area. even when their affected area looks relatively normal they may still experience intense pain.

dealing with rsd can be very isolating. many people with it have to withdraw themselves from normal activities because of the pain. it's near to impossible to explain what you going through to other people. they may act like you're looking for sympathy, it's all in your head. "come on i barely touched you
that couldn't hurt." doctors can be the worst offenders. many have little more than a passing knowledge of the condition.

as for how you feel emotionally, some days your up and some your down. my experience with other rsders shows those who
retain their sense of humor seem to do better. the better your overall outlook on life is the better you can handle any long term medical condition.

support from the church is a good starting point. a church can act as an extended family, that can help not only the girl but her parents. ask her parents what would be helpful. check out the RSDSA and rsd hope they can give you information that could help you. include her in outside church activities where she can be around people her own age. at first it will be tough
on everybody because they won't know how to respond. incourage the girl to tell people. this is what i can do. don't do that it hurts. warn me before touching me. get them to email her just to chat or call her on the phone so she has some distraction and doesn't feel isolated. be there for the parents
who are going through frustration and anxiety and remember
she's a girl with a disease not a disease with a girl attached

Hey,
I've had RSD for four years in my left leg. Luckily I was treated quickly by a pain team, and went into remission. I've been in remission now for a year, and although I'm not sure it won't come back, I feel pretty confident now. When it was at my worst, the best thing that helped me deal was the supporting kids in pain (skips) support group. Look for it on yahoo if you aren't already a member. It helped loads to know other people were going through the same thing.
I felt pretty rubbish a lot of the time, but having a good cry is something you just have to do sometimes.
Don't give up hope. Are you getting any kind of treatment?

I have had a hard time dealing with mine, but it has been very hard on me because being only 14, and not being able to be like the rest of my peers is very hard. I have been working with some good doctors and a pain psychologist which has helped me get through some of the physical and emotional pain that I deal with each day. There is no specific cure, but you can get it into remission sometimes, but there are treatments that you can do to make the pain better, or go away. There's blocks, medication (which usually doesn't help most people, but it's still an option), physical therapy, and the best thing that I've found for me is a Spinal Cord Stimulator (SCS). It uses electrical stimulation to block the pain signal from reaching the brain so instead of pain you feel a slight tingly sensation. You can get more info about them at www.ans-medical.com Some of the best days are just days that friends come over, or even call me. It starts to feel pretty isolating after a while, and it starts to get pretty depressing, and you feel like you are so worthless. It's hard, but some how you get through it, even though there are some days that are so hard, and painful. Good luck!

I know how she feels. I've had RSD since I was nine years old. It started in my right leg, after a minor skating injury. Since then it has spread, two both legs, and moderate sensitvity in both arms. I've tried everything myself. Nerve Blocks, physical therapy, and meds. I'm now sixteen, and a jr in highschool. It is really hard, and no there isnt a cure. Sometimes I get really depressed, because I'm so young and when I'm in pain I feel like my life is over. I have so many things I want to do in life...so many dreams, and I'm in so much pain, and have so little energy that I barely want to get out of bed in the morning. Recently, I slipped and fell. Now my legs worse than ever. I can barely walk...I've been having to use my wheelchair. I've missed several days of school because of the pain. I'm starting to think I wont be able to stay in school, but I'm determined to try. Support groups are helpful, they help me to remember that I'm not alone. My friends are also great. They may not really understand my condition, but they do understand I'm in pain, and they help to make sure no one bumps into me. Nothing makes me feel happier than getting to laugh with my friends, and at least try for awhile to pretend I'm not in agony. I wish that it would just go away. It's going to be hard...its one of the hardest thing that anyone can ever go through. You just have to take it day by day, talk with people, and just try your hardest to deal with the pain. I wish their was more I could do to deal with my pain, and help others, but as far as I know there isnt.