Hi there,
I am a twelve year old girl who suffers from RSD in my right arm and left leg (my leg is much worst than arm)
I have not heard aboutRND but from what I understand, it is another word for RSD, it certainly sounds like RSD in my opinion.
I found the PDF very useful, and I am sure many more people will.
Many thanks for posting this message it was really interesting
Pain free hugs
Alison
-x-

I'm still new to this despite having full body and being put on Dr. S's list to have the Ketamine Coma in Germany.
I've only had RSD for a little over 2 months. My 1st symptom was on 7/20/07and it's been spreading like a wild fire since then.

I don't know what some of the abbreviations are that you guys are referring to

Can someone tell me what the mean?
PNS
SCS
and any other I may come across

Thank you in advance for you help. This site has really helped me learn allot.

Carrie

Carrie,

The PNS and SCS are both implantable devices for pain control. The PNS is a peripheral nerve stimulator and the SCS is a spinal cord stimulator. Lots of people with RSD go through the SCS trial and/or implantation, and you'll find it mentioned quite a lot.

There are lots and lots of abbreviations when it comes to stuff for RSD. It kind of takes some getting used to. Just keep asking questions!

-Betsy

I hate the way that some of the researcher suggests that RSD (CRPS) is easily treated by physio. If you aren't cured by physio then you are insane.

I go to a university which is very well known for it's pain psychology. It runs the UKs only pain management program for children and teens (Bath PMP). I was in the library earlier searching for a book on cognitive neuroscience when I decided to look at what they had in the pain area. Reading through some of the books made me SO ANGRY - there were lots of studies on the psychological problems of RSD'ers (in one study 80% reported previous abuse/ child abuse/ sexual abuse as a "determined" cause of RSD - as diagnosed by Drs). Also there were many more suggesting it was a conversion disorder, a form of Munchaussen, malingering etc. I personally feel that the same is with RND - if you get better then your body was making it up, if you get worse then you are insane. Grrrr

I prefer the term RSD because I feel that CRPS belittles what I live with. I have before told people I have Complex Regional Pain Syndrome and they then turn round and go "ok. So why can't you move? - it's only pain".

Carrie have you tried ketamine before on an outpatiet/ oral basis? I have been on it for the last 2 years or so. I have severe full body RSD and am a quad.

Love

Frogga xxxxxxx

Frogga said:That's pretty much what I was trying to say above. Although I've never had it nearly as bad as Froggsy, I've had a lot of problems with dystonia and movement disorder, skin problems and recurrent infections from poor circulation and stuff like that. Those are often part of the package deal that is RSD, and they don't come with something that is "just really painful" as the term CRPS implies.

-Betsy

Thats exactly how I feel. I can handle pain - I can grit my teeth and get on with it I mean I have lived with RSD for 5 years. Pain isn't nice and it drives you nuts but I would probaly still be walking and still be independent and have use of my arms/ legs/ generalised body if it was *just* pain.

I know we have gone off topic Carrie - but out of interest after you were diagnosed did you start physio? or did you not. Did you find it helped you alot or did you go downhill from it?

Love Frogga xxxxx

Please see a thread I started on this a while back also:
http://neurotalk.psychcentral.com/sh...ad.php?t=10530

Frogga,
Physio? Do you mean physical Therapy? If so NO I did Yoga once a week before this all started and walked a few nights a week. I wasn’t in great shape but I was very flexible from being a gymnast when I was younger. Once my 1st symptom occurred I stopped all physical activity. It was painful enough to just walk up a set of stairs. My docs said to save physical Therapy for when I get back from Germany. Insurance Companies only allows a certain amount of visits per year/lifetime not to use them up now, save them for when I REALY need them.
Carrie

Hi Betsy,


It is a good thing that we have all our personal thoughts on what this disease is called but obviously my opinion is that I don't believe it trivialises our disease but in fact describes it perfectly. As I said this is just my opinion
The word Syndrome does indeed mean there is a group of symptoms that together represent a disease and the symptom that seems to be the common denominator with us all is pain.
Here in Australia it is never called RSD anymore so all doctors and ancilliary staff refer to it only as CRPS.
Everyone who knows and cares for me are very aware of what CRPS means and those who don't, I don't care about.

Whatever it is called I just wish it would just go away
Take care
Tayla

Took the words right out of my mouth