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

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

frogga,
My PM doc tells IV won’t help much, that it would give me little relief. I said I want to try it anyway, I’m 9-12 months away from going to Germany. I’m developing dystonia in my left arm, getting color & temperature changes. He is just sitting back watching it happen.
I’m also battling the insurance companies. I’m going under my husband’s plan 11/1 which is better so I’m hoping that they will cover the IV Ketamine, I want to try anything I can get. In patient out patient, oral, anything. He wants me to have a cervical block for my left arm/side. Can someone tell me a little about that?

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

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

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