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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

[QUOTE=Evie53;3391943]I have always considered myself to be tough with high pain tolerance. After breaking a wrist about four years ago I thought I could handle the four pins they stuck into he wrist. The burning pain was so horrible no one could come near me. By the time I got to the doctor the pain was somewhat tolerable. The doctor didn't believe me. The six weeks while in cast the swelling and redness never disappeared. When the doctor took off the cast my hand was caved in, the fingers fixed and my fingers swelled. The doctor suggested therapy. I wasn't insured so I had to go through a month of paper work to get the hospital to help me. At that time I didn't know I had RSD. By the time I saw the therapist I was in stage 3. I had mirror pains in the opposite arm and sometimes the right leg.
I had thought about suing the doctor but the thought and stress of it made the condition worse. I realized soon you can't fight doctors, they protect one another from people like us. I felt trapped. I didn't know if I could work so I filed for ss and they refused to help me.
I learned that most doctors know nothing about RSD. Most think it is a disease in your head, except I have a right smaller hand, fingers and fixed clawed hand with pinkie fixed.
I can't shake hands fearing the wrong hand shake will hurt.

Thus I've learned there is no help and nothing I can do about this condition but to take care of myself.
I try to swim regularly, putting my hand in the hot tub and then the cool pool. I keep my mind occupied with other things. I don't let myself think about what I can't change.

If I have a bad episoled I take one anti-depressent which seems to put me to sleep literally. It does help although I try not to take them because I don't want to become dependent on pills or anything else with horrible side affects.

Yes, I live with constant burning. I know the frustration of those who suffer with this dx. I have a bum hand and arm. I was recently dx with breast cancer on the same side and had a lumpectomy with sentinel nodes removed. I now am experiecing burning there and worry it could travel to that location.

This is a long post, but want to say that we can't let our dx destroy our lives. Worrying and stress only makes this condition worse. I feel for everyone who has to live with rsd everyday for the rest of their lives. I don't know if it's possible to win legal battles against doctors. Lawyers don't want to touch rsd cases. I decided after trying to pursue a case against my doctor the stress in doing it was far worse than the money I might get for further treatent. It wasn't worth it.

We need to find something positive to give our minds to. Writing is wonderful therapy. I didn't think I could work and I've found ways to let my mind and heart with the creative talent God's given me to develop ways I can make an income. Exercise, eating right, keeping busy and prayer has enabled me to live a full and meaningful life.

In no way do I mean to be trite about rsd. It is a long life ailment I will always battle with. I have a constant mild burning that gets worse with stress and over use. I won't let it bring me down. I pray for healing or for a cure for stage 3.
I hope what I shared will be a help to others who suffer with rsd.[/QUOTE]

Your post really moved me and I thought I would respond. I have had RSD for 5 years now and it has spread to all limbs. I have insurance and I still live in pain so I am extremely impressed with your ability to put up with the pain. I am on strong pain meds and still have pain and cannot imagine how it would be without them and my heart goes out to you. I have not worked in 5 years either and the battle with social security was a long one, but you have to keep on truckin with them. Three words, appeal, appeal, appeal!!!! Don't give up, thats what they want you to do. I was turned down the first time after going thru all the stages to the administrative law judge, but won on the second try. I'm currently appealing the old decision and the appeals counsel finally is allowing me to present it again sometime in the near future. So I'm hoping for some back pay. I've been on SS for almost 2 years now. I'll be eligible for medicare soon, but appealing the old one because I was disabled since 2003 but they found that I was starting April of 06.
My question is this though, what do you do to earn extra money? I too am a little creative, but I've been trying to think of ways to earn a few extra bucks and for the life of me can't think of anything. I guess I'm not that creative huh?;):)
These boards are really helpful knowing that other people go thru the same expericiences that we do. Everyone is ready to give advise and help. This disease IS one that people can't see and it's hard to descibe because nobodys ever heard of it and they don't understand. People here do understand and I've found that it really helps when you feel like you want to give up and no one understands. I get on here and read the posts and I don't feel so alone anymore. People here give ways to cope and little things to do to relieve the pain, etc.
I hope you have a lot of good pain free days ahead. But if you can put up with the pain, you're my new hero:cool:


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