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,
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

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

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.

This is a startling statistic, MJ - please could you tell us where you found this info?

all the best

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

Hello Trix

Just wanted you to know I do not think that some problems are caused by not using a limb. I have RSD full body, but started in my left hand and arm. I own a business that requires me to be active and use my hand. It was over a year of very hard work on my part and that of PT before I could pick up a cup of tea. I have dystonia in that hand that I also have to deal with besides pain. It still is wasting away, but at least I can use it now.. I do salt baths every night and work my hand under water. Nerve blocks have helped along with lidoderm patchs when I not in a flare-up. I also belong to an RSD support group, which helps me to understand I am not crazy. But RSD will do crazy things to you. Wishing you gentle hugs and sleepful nights along with less pain.


CAROSE

Hey there, MommyJen- just wondering where you get this statistic??

That was a good article but I stand by my original thoughts.
Your article points out that it is in extreme cases not typical. The article is not from a medical journal. It is saying what some patients describe as happening, it doesn't demonstrate it as a function of the condition or as a criteria for diagnosis.

I would be interested in reading more about the movement disorder connection if you have more articles. I have a strange gait that I always attributed to hving walked in pain and the favorinf subsequent fractures. The thing I find odd is that in my home where I know the floor and subtlties I can ambulate short distance with out my crutches or chair. If I go out of the house I am a stumbling mess. I also find if I am in the dark I am throwing my feet around with no idea when they will hit the floor.

Hi Mommyjen,

I have dystonia in my right limb, I do not consider myself a severe case though. It is a very rough SX of RSD. I have to take Valium for it. Hugs, Roz

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