Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-03-2008, 02:59 PM #1
Accidentwalkinghere Accidentwalkinghere is offline
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Default My story.. Helpppp

Well im a high school student and i developed RSD last year. I had a a ski accident and i had gotten a fracture . I have went through numerous doctors and have gotten no results . About a month later i was diagnosed with RSD. Nothing helps it at all even vicodin etc . I honestly feel as if no one but myself has any clue how painful and hard this is to deal with. People in school always talk about it but they have no idea what they are talking about. This has effected my life in a major way i cant play the sports that i love anymore and its tough. Just as i feel like it might get better it dosent and i think im starting to have a problem with my knee HELP ME Any advice?
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Old 01-03-2008, 05:13 PM #2
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Default HI, and welcome to the forum.

I am sorry to see another young person going through RSD.

First off, if you could tell us what state you are in, then someone in that area may know of a Dr. in that state. You don't have to give your town or anything.

Vicodin doesn't do anything for RSD people, from what I have seen. It usually has to be a stronger med. Others will come on here with their list of meds. I am only on Methadone, I can't take a lot of the others. It helps me though. I consider myself to be close to remission though. At least until the weather changes.

Have you had blocks to try and put it into remission? I feel that they can help a lot of people go into remission from what I have seen and went through.

I always worry about my boys ending up with RSD. They are both in sports. One in 7th and the other in 9th grade.

I know if you stay around, others will come on with some help on meds and other things to help with the RSD. Another thing is PT. I don't believe in aggressive PT though. If we were able to do aggressive PT then in my book you could still be doing sports and I don't feel that is the case for anyone. Massage, hot water therapy, accupuncture, Hyperberics, are just a few of the things that seem to work for some.

I sure hope you start getting some relief soon.

Ada
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Old 01-03-2008, 05:20 PM #3
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Default Hi you are not alone...

You are so young to be hit with this type of illness. But you have come to a good place to learn about the disorder which is what you should do. It will help you understand what is going on inside your body. There are wonderful people on this site who know a world of information.

One of the sites I like is www.rsds.org it has so much information.

How long have you been going through this and are you under a doctors care?

We all go through people not understanding what we are going through but there are people who understand and you are not alone.

Any thing I can help you with just ask.

Ann
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Old 01-03-2008, 10:07 PM #4
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Hi, My name is loretta jewell, I answered in the introduction section. Stay with us, we care.
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Old 01-04-2008, 12:49 AM #5
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You have your age working in your favor. Younger people are much more likely to achieve remission. Don't give up. You have a two year window where treatment is more likely to work so try to get treatment. Painrelief, blocks, the pump, and several other treatments can be effective.

Don't give up hope even if you can't lose this thing. It will change your life but it won't necessarily destroy it. Have what fun you can and try to stay upbeat.

Best of luck.
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Old 01-04-2008, 02:13 AM #6
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hey i just wanted to jump on and say hi. my rsd also sprung to life following a ski racing accident. the epideral didnt work as one might have hoped for.
anyway good luck
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Old 01-04-2008, 07:11 AM #7
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Hi welcome to Neurotalk,

I am so sorry about everything that you are going through ((hugs))

Please let me introduce myself:
My name is Alison, I am 12 years old (nearly 13) and I suffer from RSD in my left leg and right arm. I first developed RSD in my foot on the 16th March 2007 after an ankle sprain, I was diagnosed with CRPS/RSD type 1 4 months later.
I was later prescribed Amitriptyline by my PM doctor to try and help me sleep, but I suffered from a nasty side effect of "blurred vision" this resulted in a knock to my right arm, I was diagnosed with RSD 2 weeks later.

It is hard for anyone to understand what an RSD patient is going through. I am having real trouble explaining to my grandma and grandad about RSD, but thankfully I have a great and supportive mom who helps me a LOT.

I am unable to go to school due to pain and mobilty issues, I am starting online tutoring soon. I miss playing sports a lot.

If you need anything, don't be afraid to ask. I will try and help you if I can.

Take care
Love
Alison
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Old 01-07-2008, 07:36 PM #8
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Heart So Sorry

I'm so sorry you're going through this at such a tender age.

I'm sure you and Ali can relate to one another more than anyone else here since you are so young and having to deal with a world of pain.

I'm so sorry you're missing so much of what you love and so early. I do hope things get better for you. I'm optimistic things will, I've read that your age is on your side with RSD.

Don't give up hope, ever!

Read up on posts here, there are some great suggestions which have given me some days with very minimal pain.

Keep reading and make sure you are aware of everything about RSD. Some doctors know the basics, but they may not know important things that might make things worse. Don't be afraid to bring post, articles and question doctors. Have your parents learn everything as well, that way you have other eyes looking out for you.

Best wishes for you, please stick around. You have found people who understand and it's the most important thing you can find when you have this disease. Very rarely will you find people outside this forum that completely do.



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Old 01-08-2008, 03:51 AM #9
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Hi there,

I am so sorry to hear of your pain. My son is 12 and has been recently diagnosed with RSD in his stomach. I completely understand people not understanding your pain - I see it with my son. We're not sure how our son developed RSD - we have an appt. at Children's Hospital in Philadelphia with Dr. Sherry - he is suppose to be good. Where do you live? Maybe there is a Dr. Sherry near you! I'll let you know if he is worth contacting.

I will keep you in my thoughts.

terry
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Old 01-14-2008, 05:48 PM #10
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Hi, I can understand what you are going through - feel free to PM me whenever. I developed RSD when I was 16 and, well... I'm now 22. I know what it's like to try and live with it! and having it and trying to do education is pretty tough! I'm now at uni though and you can get through..

It's hard when people don't understand - it took my friends a long time to understand what it was, but they are awesome about it now.

I hope that things sort themselves out for you soon. Do you have a good PM dr?

Take care

Love

Frogga xxxxx
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