Reflex Sympathetic Dystrophy (RSD)

[livingwith]

My name is Stan. I am 49 years old and was injured at work 2/9/06. My left hand & arm (shoulder) was mangled in in a magnetic drill press. I was taken to the hospital and stapled up from the tears in the center of my arm above my elbow. I had lacerations and cuts all over the arm. I had to follow up with workmed the next day. After six months of getting no better, I had to retain legal assistance to fight for me to get second opinions. I have had surgery to my elbow area and somewhere aroun...Read the full article

[Teresa J]

Dear Stan and Debbie

I read your posting and my heart went out to you. You see, we have been dealing with RSD since 8/15/05--very similar in time frame as you. While you had an accident I just woke up one day with this terrible pain. No matter--pain of RSD is like no other. You can't get away from it, you can only come to terms that your life now includes this pain that will not go away. As for dream of what you have waited for all of your life (retirement) now seem like ashes that have become mud in the heart.

My life changed in August 2005 when I woke up at my cabin with pain in my feet (both) that did not seem to be relieved by anything. I took so many NSADS that my stomach now cannot tolerate anything with asprin products in them (a real bummer I'll tell you). Things just spun out of control. As a teacher I had to report to school by the end of August to prepare for a new year--the hardest time in the entire school year. I was going from doctor to doctor. By the end of August I had lifts in both feet. By the middle of September I was on crutches. And by the end of September I was on crutches and a boot for one foot. In October I began to see the doctors at Mayo Clinic in Rochester. Great place. However, no diagnosis--nothing helped--and the pain only got worse. That burning, stabbing, aching, all encompassing pain. I thought I was going out of my mind.

Let's say by the end of October I could not bear it any longer. Each step felt like I was walking on a hot bed of nails. In November I got a wheelchair. That helped, but the pain continued. I saw so many doctors that I really can't tell you who they all were. They all said it's not...... . But couldn't tell me what it was. At the end of December I went on Medical Leave from school. Pushing on for a diagnosis that would finall end the pain. I was finally diagnosed on January 12, 2006. It was a bone scan taken of my feet that finally showed the foot and ankle specialist at Mayo the diagnosis. RSD.

Mayo's phone number is 1-800-6604582

You see, on the bone scan it showed patches of dye "uptake" or white spots on my feet. These spots were where the sympathetic nerves were firing--for no apparent cause. I got my diagnosis, but not the one I wanted. This RSD was something I had never heard of and after researching it on the web when I got home, my husband told me not to read it, it was not a pretty picture.

This post is getting really long, but I wanted to tell you that you need to get to a doctor who treats RSD on a regular basis. Not one that has researched it and said there is nothing they can do. Get a second, third, or whatever opinion.... you deserve to get the best treatment. Mayo Clinic in Rochester is one of the foremost noted clinic in the country. Please, please try to get to a clinic like that to help you restore your life.

Here's mine. After 2-1/2 years of treatment. (Meds, psych, PT-who specializes in RSD, meditation) I no longer can teach--I am on long-term disability (something I didn't even know I had) and my Soc Sec hearing will be held next month. Most of my day is spent trying to get the house straighted up, praying to my God, and now I have made it a point to try to help others with this terrible disease. I quilt at home and go grocery shopping.

My health insurance paid for a scooter and wheelchair. We bought a new van with a lift so I can take my scooter where I want to go. This has been the most important thing in my treatment plan. I can get out by myself. I have some mobility.

You have this terrible pain in your arms--or should I say all over. Mine was like that before I finally said, "Enough is Enough!" Who was ruling my life--this pain or me? I wanted the answer to be me. Praying was and still is the most important thing I do. It is the only time I can truly say the pain I continue to have is lessened. From that day on I had to push on in the pain (not through it) and get my head on straight. My weeping was getting me nowhere but worse. Anything had to be better.

RSD is with you. It is part of you. But it is NOT you. Do not let it take over or life will become a death sentence. I can be that someone to help you if you want to talk. I'm 50 now with a wonderful husband named Don. We have three grown children who are all married. Right now we have 6 grandchildren.

Teresa J

[suzic]

Dear Stan & Debbie,

Please please go to an RSD specialist. Between medication and either a spinal cord stimulator or an intrathecal morphine pump, you can have much less pain and still have a more productive happy life!!! I have had RSD since 2001, I was lucky to have a quick diagnoses, but still fight for treatment in th Calif work comp system (thanks Governator Schwartzenneger). I had 4 md's tell me that I would never work- even part time, I have been working fulll time since 2002. I stll have pain, sometimes it is quite debilitating, but not totally and not all the time like you are encountering now. God Bless you both, Suzi

[stevensr]

Hey Stan, My name is Steve. I know how you feel. I crushed my leg at work in Jan. of this year. Turned 48 in March. Welded some on my job. Was diagnosed with rsd/crps rather quickly, mine was obvious. I have it in my left foot, my pain is like yours. If your friends have quit coming around, they were not real friends. I had 12 nerve blocks, and it is still the same. My leg has shrunken up. Can't run or jump anymore, can barely walk. Tired of sitting in front of the TV. Been doing it 7 months now. Hang in there like i plan to do. I'm not going to let this beat me. I shot my TV so I can go for walks and I hope to run again soon. I don't care if people see me crippled. Men are Men and boys are boys. We have to deal with it. Try to take it out of your mind and get away from that TV, life is too short. Steve

[hot foot]

Stan, Have you heard of the Ketamine induced coma's they do in Germany for people who's RSD is as bad as your's? I have no idea if that is a possibility for you or not, because it would be quite expensive. Are you and your wife familiar with the official rsd website at www.rsdsa.org ? If not, you can read about that procedure there and others you might not have heard about such as hyperbaric, etc. I wish you relief from your terrible pain. You will be in my thoughts. Sincerrely, Terri Stevens

[dawnm]

Hi Stan,
I have resently been diagnosed with RSD, and just joined this forum. I am putting my faith in God to get me through this. I know the pain is going to get worse and I will lose my ability to do everyday things. I have it in my right leg so I know I will lose my ability to walk freely. I already suffer with the intense burning pain and throbing pain. I understand everthing you said. I use to love getting under clean freash smelling sheets. Now I can't stand anything touching my leg.It is burtal to shave. I beleive there needs to be more awareness to this, in hopes fpr a cure. They are making great strides in nerve injuries.
God Bless
Dawn