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

Carrie,

I never heard of insurance companies putting a limit on phy thereapy?? or even a life time limit... I have had 2 insurnace companies and had phy therapy with both of them and they said as long as I pay the copays and make a gain or still have the diagnosis that they would still pay with no limit. I am interested in yours having a limit and a lifetime limit!! god that would suck ! sorrry.

Have you tried getting into seeing Dr. S in philly instead of going to germany? and how long have you had RSD??


Amber

Hi Carrie

Ok - so what have you tried? The way I understand it you have full body RSD for the last couple of months and you are now developing dystonia in your left arm? Is that right?

Ketamine - you can take this orally every day - which I do. Some people here swear by things like Grape Seed Extract and antioxidants such as DMSO. There are pain creams which can be used which are a mixture of ketamine/capascin and other stuff. Blocks - it would be worth a try as you sound like you are in the beginning stages of RSD and you are not going to lose anything by trying and they really help some people.

I am really baffled by what you say about physiotherapy - to not have had any at all? If you believe that your RSD is similar to the RND type then surely having physio is really really important (and yes I do know exactly how much it all hurts! but I have been unable to find a physio willing to treat me for the last 2 years or so because I'm too advanced/ in too much pain and alot of the deterioation I have had to deal with since I feel is related to that. The problem is that contractures can form fast in RSD areas and so physio is really important or SOME way of keeping the muscles moving/ normalised.

I know this may sound like a rant - but I have had huge problems with physio which alongside severe RSD has meant that I have developed contractures in most of my joints. You may never get them, many don't, it's just I know how hard to deal with they are and I don't want anyone that doesn't have to to go through that!

Love

Frogga

xxxxx

Frogga,
Is oral Ketamine covered by insurance RX plans? The only thing I have tried is regualr meds, anti inflamatories, anti seizure, muscle relaxers, pain med, anti depresants & supplements. Have done no physical therapy and do not plan on it. I tried to ride my exercise bike a once or twices but it just made my leg muscles too weak later in the day and I ended up on the couch with limp burning legs for the rest of the day.
What is DMSO that you mentioned in you mesage?

Carrie

Amber,
I've worked in the medical administrative field for 12 yrs. almost all ins companies or at least the ones in my area NJ have a limit on physical therapy. my plan NJ Blue Cross/ Blue Sheild) is somthing like 40 visits per diagnosis.
I have seen Dr. S, he is the one that pu me on his Germany list. He controls the list. He said I need IV Ketamine too but we are fighting with my insurance company on getting it covered. I've only had RSD for 2 months.
Carrie

Hi Carrie.
Ihave only one question here; How in the world did you manage to get in to see Dr S so very quickly? My understanding is that the waiting list to get in to see him at all are very, very long. It has not been unheard of for a patient to be on the list for close to or even over a year. How did you do it so quickly?

Thanks,
Jose