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 05-16-2007, 09:24 AM #1
Lillyblossom Lillyblossom is offline
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Grin I'm a Little scared; RSD


Hi all,
I'm new to the forum, but have been lurking for a while I think this is a great forum with lots of support from people who know!
My fear is possible RSD, I have had several surgeries on one of my shoulders....which has resulted in a nearly usless dominant arm. I have been having some strange sensations that I can't seem to distinguish...I have either a burning or a cold feeling skin area on my back and upper arm surround the surgery site. The feeling comes and goes, is very uncomfortable, and I simple cannot tell if it feels hot or cold (does this make sense?). My arm is always mottled looking, and if I hold my arm a certain way....I have a slight tremor in my thumb. This is scaring the heck out of me for fear of RSD...as this was orig a work injury, and I am on workers comp and have already been put at max medical improvement...with pain management meds for life (lyrica is one of them). I have no future MD appointments scheduled with the shoulder doctor. Am I just being paranoid? I have read up on RSD...but can find no info or symptoms of how it begins. Can anyone enlighten me?
Thank you, Lillyblossom
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Old 05-16-2007, 10:53 AM #2
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Hi Lilybossom and welcome. Sorry to hear what you're going through. Have you thought of going to another doctor for another opinion? Are there any pain clinics in your area. Much of what you've discussed does sound like rsd symptoms but only a doctor can tell you for sure. If it is rsd you want to start treatment right away so please consider asking for another opinion. Hope this helps...Jeannie
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Old 05-16-2007, 11:02 AM #3
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Hey Lilly blossom,

I agree with Jeannie, that you should really get another opinion from a PM dr about whether you have RSD or not. The sooner your start treatment the higher chances of recovery you have, and even if the shoulder has organic damage it may help recovery of some use.

Good Luck and let us know what happens! I hope you haven't got RSD, although it does occur after surgeries etc.

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Old 05-16-2007, 02:34 PM #4
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Best of luck, Lilly. Do go get another opinion, please. Delaying treatment is not a good thing, as others have said. My case was a work comp one also, and I let them push me around too long.
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Old 05-16-2007, 04:37 PM #5
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hey lilly... my RSD came after shoulder surgery. i had never heard of it before and i was scared to come into the forum after reading some of the posts. the truth is, i was feeling the same pain as most of these people, experiencing the same symptoms, but i didn't want to give it a name. even when the dr. told me about RSD, i didn't want to face it.

if you have any concerns at all (which you obviously do ) you should get another opinion. my ortho sent me to the pain clinic IMMEDIATELY when the treatments she was giving me weren't coming close to ebbing my pain. the pain doc. knew exactly what i needed (which won't be the same for everyone) and he gave me meds that helped with the pain and shots in the neck that felt woooooonnnnderful.

everyone i have met in this forum has been so wonderful and full of compassion. it's ok to tell us how you feel because chances are, the rest of us are feeling it too. it's hard for people that don't have RSD to really know what excruciating pain we are in. so it's really good to have people that you can feel comfortable venting to. (sorry to all of you english majors - yes, i ended my sentence with a preposition ).

best of luck in your journey.

shalom,
angie
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Old 05-17-2007, 08:24 AM #6
Lillyblossom Lillyblossom is offline
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Question scared of RSD

Hi all....Thanks so much for gracious welcome, and your replies, I guess I need to call the lawyer so I can make an appmnt w/ MD .
But my major question was this;
What were your beginning symptoms of RSD prior to being dx'd?
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Old 05-17-2007, 10:14 AM #7
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I also want to suggest second opinions for your symptoms now as well as to verify that the surgery was done well.

I can't answer your RSD question as well as the group can.
I was wondering what your original injury & diagnosis was?
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Old 05-17-2007, 10:23 AM #8
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hey lilly!

my beginning symptoms were pain, pain, pain. i never thought to look at my shoulder for any discoloration because i was still under the care of my orthopod AND i didn't know what RSD was so i didn't know what to look for to begin with (nice runon...). it was pain that wouldn't go away. i kept telling the dr. that i felt like i was being branded. hot. fire. burn.

lucky for me she told me right away what it was and sent me to the right person that knew what to do and did it right away. unfortunately for most people that suffer with RSD, they go thru many, many doctors before they get that diagnosis.

i'm sure you have read up on RSD, but bring it up to your doc (if you haven't already). sometimes docs don't like "suggestions" but if it IS RSD you need to know right away so they can begin treatment and you can get a little closure.

hope this helps!

shalom,
angie
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Old 05-17-2007, 11:42 AM #9
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Welcome!

Some of my symptoms prior to dx were: pain!! (burning, shooting, stabbing), swelling, discoloration, loss of motion, skin temperature was very cold, no sleep (from pain) and muscle spasms. I now have tremors and oh yes! strange sensations quite a bit!

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Old 05-17-2007, 12:39 PM #10
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Hey Lillyblossom

Firstly, everyone experiences this totally differently and shows different symptoms. I was diagnosed with in 3 weeks after a fall - BUT I do have severe RSD. My pre diagnosis symptoms
  • huge swelling/ pitting oedema
    freezing cold arm
    blue/ black/ purple arm
    huge stiffness, deformity, spasms in fingers
    severe alloydinia - any touch was agony especially clothes, people and wind
    inability to sleep from pain
    deep burning, kicking, firey, stabby, electrical screaming pain 24/7
    funny feeling of being crawled on by ants STORMING up my skin.

Hope this helps.

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