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 03-20-2007, 01:25 PM #1
trix trix is offline
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Default Newly Diagnosed Need Advice

As you know I was recently diagnosed with RSD. I found out today that I have a 1.2 degree tempurature difference from my hands to my arms, and temperature difference from my hands and arms to my chest.
What does this mean? What should I ask my Dr. for? What is my best chance for remmission? I apologize for burdening you all, I just have no idea what to do now.
Tracy
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Old 03-20-2007, 01:54 PM #2
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Hi,
Sorry to hear you got RSD. The good news is if you find out in the first 6 months 90% of people can get rid of it. Try not to put too much stock into the temperature difference. There are many causes of that and it is just one small piece of diagnosing RSD. The temp difference in and of itself is not dangerous. You want to ask for a 3 month plan. Ask them what the goals are for 3 month. Most important thing it PT Use your limbs and unless you have a fracture or injury try not to imoblize or favor it. Most of the " crippling" you hear about iwth RSD is from disuse. The wasting of muscle, spasms.... all of that would happen to anyone who stopped using a limb normally regardless of a pain syndrome. RSD is basically phantom limb pain so you can and should ask for nerve blocks. An early diagnosis and a good thing!
Stay on top of the doc's to get started on the PT and blocks. Try to stay away from narcotics if you can for now. You want to have some choices if you go past 6 months with no relief. I am sure others wil be along with more to add. I have had this since I was 3 and I am a married mom of 2 now. It isn't a death sentence so stay positive! I also reccomend seeing a chronic pain therapist just to help you stay on an even keel while you treat it. Blessngs
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Old 03-20-2007, 07:22 PM #3
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The temperature difference means that all sorts of things inside your arm are not working properly which is causing the temperature to be colder on the rsd side.

My rsd side used to be 10 degrees colder than the other.

It is just a symptom. There are many others besides pain, like discoloration( purple, pink, black), . Check out some of the rsd website that list all the possible symptoms.

Peace and hope,
Lisa
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Old 03-21-2007, 02:45 AM #4
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Quote:
Originally Posted by trix View Post
As you know I was recently diagnosed with RSD. I found out today that I have a 1.2 degree tempurature difference from my hands to my arms, and temperature difference from my hands and arms to my chest.
What does this mean? What should I ask my Dr. for? What is my best chance for remmission? I apologize for burdening you all, I just have no idea what to do now.
Tracy


Hi there, I agree with Mummyjen. It is early days and things can get better!!
Sometimes you do need to be very pro-active and insist upon a referral to a doctor who will treat your CRPS with blocks, ketamine, graded motor imagery and physio instead of huge amounts of medications.
The temperature change is just a sign of sympathetic nerve dysfunction causing vaso constriction and therefore colder temperature. It is often transient and will often improve greatly with nerve blocks.
Please stay positive and remember that many many people get better but unfortunately they don't usually come onto these forums to tell us. You can get a pretty jaded view of the outcome but just reading CRPS/RSD forums.
Lots of luck and
Tayla
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Old 03-21-2007, 11:18 AM #5
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Some of the temp change can be from TOS too.

The early treatments as suggested by the others is the way to go- I think.

If you can add some Vitamins & supplements from a nutritional/healing standpoint- i think theres some info on that here or ask on the Vit & Supp lement forum- there are interaction checkers on both forums stickys too.
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Old 03-21-2007, 12:52 PM #6
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Hi Trix,

Check your PM's.

HOPE
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Old 03-21-2007, 01:28 PM #7
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Wink I agree..

Hello..

I would like to add antioxadents such as grapeseed extract.. I just drink ALOT of white tea for my antioxadents, and if you wanna warm up that arm I'd sugest a warm soothing epsom salt bath (helps with the pain too).

I was diagnosed at 4 months and thanks to WCB didn't get my first block till I was over 9 months along (lol sounds like gestation) and by then it was too late. Do your research and then bring it to your doctor, but don't overload him/her at first.

I didn't push enouph and don't think it coulda put my fire out permanantly because I have body wide symptoms that started before my blocks did.

Sory to ramble the cold thing is scary just try to stay warm and do some research... we can help you here.. this group of people have awsome support and research potential here a goldmine.

Have you read the rsdrx.com website?

Best of luck hon and try keep that limb warm I find the colder I get the worse my pain.

Hugs'
Sandra
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Old 03-21-2007, 03:28 PM #8
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Hi Trix,

I'm so sorry to hear about the new diagnosis, but welcome, and I hope we can help a little. Several people here have TOS as well as RSD so you're not alone.

Quote:
Originally Posted by mommyjen View Post
Hi,
The good news is if you find out in the first 6 months 90% of people can get rid of it.
This is a startling statistic, MJ - please could you tell us where you found this info?

all the best
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Old 03-21-2007, 04:52 PM #9
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erm.....

"Most of the " crippling" you hear about iwth RSD is from disuse. The wasting of muscle, spasms.... " (mommy jen)

I'm sorry. I don't agree. To put it simply (I am really unwell at the moment so can't be at the computer for long and am getting a friend to type this) neurological issues are involved with RSD.

Also, my consultant (best specialist in the UK) believes that there are 4 types.

Explain more later.

Frogga xxxxxxxxx
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Old 03-21-2007, 05:25 PM #10
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Quote:
Originally Posted by mommyjen View Post
The good news is if you find out in the first 6 months 90% of people can get rid of it.
Hey there, MommyJen- just wondering where you get this statistic??
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