What Doctors are you working with for your RSD?
 

I have a quick question. What Doctors (meaning what type of Dr) are you working with for your RSD? I have heard of people working with a neurologist, pain management and a rhuetmatoid Dr..

Currently I am working with a pain management Dr. and was wondering if a neurologist would be better? :confused:

Please tell me who you have had the best results/ help with. Thanks.

Hi Vanessa,

I have CRPS type II in my arm, and work with a neurologist. I also see an OT and saw a psychologist this spring, who helped with depression and biofeedback techniquest.

Whatever specialist you work with, make sure it's someone you can communicate well with.

Good luck!

Annie

I see a Pain Management doctor. They have a Psychiatrist in their office he works with for his patients also. He also sends me to another type of PM doctor who does my procedures such as SGB's & LSB's. The only neurologist I have seen was an IME who didn't know jack crap. But then do they ever??? *LOL* IME's that is. I have also done PT in a pool & am planning on going back to that.

Make sure that whoever you see knows as much as possible about RSD or is atleast willing to learn about it.

DebbyV

Hey

I am under a rheumatologist (who specialises in RSD), a pain management dr, a neurologist, wheelchair clinic and orthotics.

Been under loads of other clinics as well. Most important thing is to research things and to find a dr that is used to treating it and who will utilise physio etc as well.. neurologists are either awesome with RSD or totally horrendously awful - my first one was dreadful but my new one is brilliant!

Good Luck! ! !

Rosie xxx

Thanks for the responses. I think I am going to see a neurologist from Hahnamonn, since they are great and deal with RSD. As others have said, what Dr. doesn't matter so much as their experience in RSD. I need someone who knows what they are doing, and who will listen to me and work with me. I agree Annie Poo, I need to be able to communicate well with him/ her. That's the trouble with some Drs.

Thanks again! :)

My doctors
 

I am under the care of a Doctor of Osteopathic Medicine (A rehabilitation medicine doctor/physiatrist). I am now almost 21 but during my teen years (from about 14-18 I was under a pediatric neurologist and then up until this past summer i have gone without a neurologist.

I just recently found an adult neurologist which is wonderful to work with the DO on pain control although at this point I only go about once every 4-6 six months.

Hi HeatherAnne -

I forgot to say Welcome! Really glad you've joined the forum, we have several people your age here (dreadful, to have this so young...) I hope you find us helpful - we do try! - but it sounds as if you've had this for some time, you may know much more than some of us :p ....how did you get RSD in the first place?

all the best
:)

Thanks for the response, HeatherAnne! Nice to "meet" you. I'm new here, too.
Could you please share your story of RSD with me? I have been trying to find younger people with RSD to talk to and I haven't found very many. :( I am 16, and I was just diagnosed with RSD November 16th 2006. I have been trying to find out so much so that hopefully I can recover. I have heard that if you are in your teens you've got an 80% chance of recovery... I am hopeful.

I currently am working with a pain management Dr., and I am going to probably change to a neurologist (if a regular neurologist from Honamonn will see me).

I am on neurontin and I am going to physical therapy 5 days a week (for 3 hours each time now!).

What did you do when you were first diagnosed? Like, what meds/ PT/ OT???

I can tell you more about me/ my story later on. I have to type the whole thing up, and it's hard because the RSD is in my shoulders/ shoulder blades all the way down my arms and into my hands. Usually my wrists and shoulders are the worst. But anyhow, typing/ writing are both hard.


Oh, do you happen to know of teen RSD forums/ sites? I am on a few email groups but they are so slow...

Hey Heather Anne and Vanessa

I am 21 and developed RSD when I was 16 after a fall. I now have it full body. I am on the UK sites SKIPS and AYAP if you want more details then just shout!

Take Care

Love

Rosie xxxx

Hi Vanessa,
I really don't think it matters what kind of Dr. you see for the RSD if they are open to giving you major pain meds, getting blocks, getting good pt, getting good Mental health care for the RSD, or anything else that works for controlling of the RSD.

I saw 4 PM Drs. a Rheumetologist, 3 Neurologist, 2 Physcharitist, and 2 Physchologist. I ended up being taken care of by my PCP. He is also a Sports Medicine Dr. and he councels me also.

What you'll find is some Drs. no matter what kind are not good for anything accept diagnosing you and then just not doing anything to help get the RSD under control. Some feel you donot need narcotics, some doesn't know enough about RSD nor do they want to know. I believe it's because it is such a hard medical problem to get under control and they know there is no end to the care so they don't want to deal with it. Also some are afraid to deal with it aggressively with narcotics to the point it sometimes needs to be delt with.

You may not find the right Dr. at first but just keep at it until you find one that isn't afraid of it. Don't just think you are going to go to a Neurologist and he will jump right on it. Don't get discouraged if that doesn't happen. Anyone on here can tell you it's so hard to get the right Dr. for it. Their stories tell what they have been through to get the right help.

It's always sad to see so many new ones have to come here but you will learn a lot from everyone here and get very good support.

Have a good evening.
Ada