Thank you all for your info shared so willingly. I will look closely and see what else we can do. I will also try to get her to chat with you guys.

We have just gotten home today from the hospital, Ashton was put in a few days ago to transition her meds from the TEC meds to other meds. Once the meds were turned off at home on the TEC the pain increased worse and moved up her leg and into her back so the Dr. put her in the hospital to control the med change and she did much better. The pain levels are at a 3 when doing nothing but double to a 6 or 8 to stand and bear weight with a walker. The Dr. tells us today she will have to work through that and continue to walk. I'm a little sad by that and concerned she feels she is done with treatment options other than meds. The TEC was in 13 days and worked great - to a point we so wish that could be perminent. The sensitivity is much better and she was able to build muscle strength and ROM - she has moved to walking with a walker and doing it pretty well to now she is in much pain and will regress I'm afraid. I will continue to look for what is next - I'm not to the point to say we will just "deal" and live with it. . . . that is the message I felt we received today from the Dr. .

Thanks again for your post!

Hello again Andrea,


It does seem odd that meds are the first option at the moment for Ashton.
I really would discuss things like Lumber sympathetic blocks whilst the disease is so newly diagnosed. A block maybe all that is needed to re-wire the process
There are other non invasive treatments that I think would be great for her too such as Graded Motor Imagery and Mirror Imagery.
Excellent results can be gained if these are started early after diagnosis.
Can you find a Physiotherapist who is knowledgable about RSD/CRPS, who is up to date with the current treatments?
I know it does seem cruel but it is really important that she does keep moving. If you can just encourage her and reassure her that whilst there is pain, in this disease there is usually NO injury so using it will not make it worse. This is very hard to get the mind around I do know, and I feel really sad that this has happened again to someone so young.
Wishing you heaps of luck, please do not be hesitant to get second and third opinions as it will probably make a difference to her outcome.
Love Tayla


PS- forgot to mention the importance of a psychologist who specialises in pain management patients! They can be a godsend!

Hello There!! I am having nerve blocks done and so far, it is really helping me, along with moving my muscles, physcial therapy and medication is the way to go. I am lucky that my ortho caught mine 3 months after I had my carpal tunnal surgery(This is how I got this dreaded RSD) Anyway, like I said the blocks are a great start! I wish nothing but the best for your daughter, Ashton. Please feel free to P.M. me anytime. Welcome to this group. ~Love, Desi