Hi all,

My name's Tom and I'm 23 years old and from the UK. I got diagnosed with CRPS II in April 2012. Since April it's spread from my left toe, to left foot, right toe (strange right) right foot, up both my legs and into my right hand and arm. I can't come to terms with such a rapid debilitating turn, though I'm trying blocks and have been enrolled into Dr Andeas Goebel's immuglobilin treatment in February 2013. He's an expert in CRPS so let's just say I have high hopes!

To those of you fellow rsd'ers that have had a spread, how quickly did it take to get to where you are now? Do you still have hope for new or future treatment? I know cancer is a terrible disease, but I wish there was more funding for crps as it's not fatal but just as painful. We have no way out!

Dr Goebels is one of 7 UK specialists I have spoken to, I'm soory but not one of them is an expert, none had ever heard of American and Dutch Papers I spoke about even though some of them are over 10 years old, some still recommend the use of Guanethedine blocks although 8 studies have been carried out saying they are useless against RSD, the first was in 1993. One was going to send me to Germany for the 5 day Ketamine coma at least 18 months after it was banned there, and the UK has never done a trial on a cure for this condition even thugh Isreal have done 3 and South Korea 2.
Last specialist I saw 2 weeks back said I only care what goes on in the UK and that has been the attitude of all but one of them.
As far as RSD/CRPS is concerned we are a third world country.

I don't think the ketamine coma has been banned in germany. I've seen people post about being referred there from america. And I think dr goebel is an expert compared to most doctors! It seems that you've been having bad experiences so far then?

Tom,

It has taken mine 3 years to start spreading. Now it is in both feet. But the original foot (right) is far worse then left. I believe I also have some internal stuff going on, but not sure if it is medication related or rsd.

I am sorry to hear about your spread so fast, some are slow some are fast. I can argue against or for your dr.'s there in the UK, all I can say is that I have heard of people going to Mexico for Ketamine coma.

For those of you that had it start real slow, what was the initial onset of the pain like? Was it full on pain from the start in the initial site, or did the initial onset also come slowly (like minor pins and needles) and if so how long did it take to build up to full blown crps pain? I'm just curious if everyone starts with the sudden lightning/stabbing onset or if it can build slowly mimicking more of a peripheral neuropathy pain at first, or even have a dormancy period after the injury/surgery, or does it always start immediately after?

In my case, the ulnar nerve in my R hand had a slight lump. And my pinky and ring finger all the way to my wrist has a numb feeling. No pain unless it was strained. Then the mass on my ulnar got bigger and instead of the numb feeling, it went to electricity when touched. Even the wind would hurt. Pain shoots from my hand to forearm to shoulder to neck. Like I threw my arm out. I have bone loss in some wrist bones. My hand is shrinking. Skin turned colour, hair grew faster, I shave it now for the lido patches. Nails grow fast. Wounds heal in weeks instead of days. My mind has been turning to mush. It's been about 10 months now since my accident. I didn't catch it early and that could have been my demise. I can still use it some so I'm grateful for that.

Cancer patients aren't killed by the chemotherapy, We aren't killed by the RSD but according to one American source in the long run 25% of us committ suicide, I've treid as have many others I have been n contact with. The Ketamine coma not only left some patients in a permanent coma but killed others. The FDA banned it in the US because they only allow 2 day medically induced comas but I don't actually know the reason for the German ban, I just thought it was because of the number who stayed under or died.
If you want it now it's is only being done as a trial Hospital San Jose TEC de Monterry. I was told you have to pay $50,000 to go on the trail, $9280 doctors fees and about another $2000 in other fees plus the cost of getting there of course

Tom - Mine is from venipuncture and electrical injury and spread to all 4 limbs within weeks - very rapidly. What type blocks are they doing and how are they going? Best/

I have been dealing with it for a year now in my right hand to shoulder, undiagnosed until this last june, and in the last 2 months, i messed my foot up and it spread to both legs, and back and neck. my left arm has pain and tremors, but nothing like the other 3 limbs. I have been going doctor to doctor, and i dont think any of them are experts. I think people who deal with this have a lot more knowledge...just my opinion.

i hope that you get relief, and your doctor will have the knowledge to help you, stop the beast from spreading..

I think you're right about us knowing more. My GP just laughs when I mention any information found from the Internet. They're stuck in the dark ages or maybe stuck up their own asses..

I'm really sorry to hear of your spread. Have you had ketamine ?