The posts are probably old ones. It was banned in Germany before 2010 because of at least one death, I read the blog of a man who's wife deid there. When I found out Addenbrookes were going to send me there June last year I contacted the German Embassy, they refused to Confirm or Deny the ban but put me in touch with the only clinic who carried it out. Now only done in Mexico. Addenbrookes now this because they stopped trying to raise the funds
You say about funding, when you see Dr Goebels ask him why when asked if he would be prepared to spend 3 or 4 hrs for a chance at £500,000 for research, 50 witnesses heard him say "I don't need the money."
If you want to help the fight in this country then PM me

Andrea,
That's disgusting that you've had to live with RSD for 21 years! I mean, I don't have another word to describe it really - I don't understand how the marvel that is the human body can malfunction in such a stupid, serious way?

I wholesomely understand why you're tired of the tests. I'm only 4 months in and already feel like a lab rat. *The nerve conduction test was really quick for me so not too bad. I did have to put the pads on myself though because the guy was really manhandling my foot.

LSD may work, so does weed but it's a different existence so in that sense I don't think it's really a long-term cure. Healthcare doesn't seem such a problem over here - I mean I haven't had to pay anything at all so no financial worries but my local pain clinic only do bier blocks. That's all they offer! My GP is scared of giving me more painkillers as well, but I suppose in the long run it won't really make it any better so I'm not overly bothered.

Bravo for not letting it get you down. Can't say I'm as strong as you but I'll try and hold on.

Cancer patients die but they don't stop chemotherapy... Ugh. I PM'd you.

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

I, too, was a very rapid spreade. Mine went right foot, leg, hip, left foot and knee, and right hand to elbow (due to a botched IV). I now have an scs(spinal cord stimulator) implanted to pretty much keep the rsd in my legs in check and I take meds topomax and dilaudid to keep arm pain as well as it can be. Course, it's hard to type and write, but I'll take somewhat pain control over non e any day!

It is a very tough disease and I have been working with a counselor as I was a marathoner and triathlete before diagnosis. Soooooo, there has been a period of adjustment and acceptance for me. I was extremely lucky to be diagnosed early and treated aggressively by an awesome pain doc who specializes in rsd and believes how horrible it is!!

Anyway, hope things go well and get better for you!!

TK

What is the SCS like? In terms of sensation and day-to-day wearing the thing, can you sleep on your back? I tried a TENS machine and I didn't like the feeling at all. Is it similar in that there is a tingling sensation when you use it? Or does it work in the background with no particular sensation? Does it get rid of most of the pain or just the shocks?

I hope it's helped you anyway

My RSD started in my left ankle when I was 13 and stayed there for about 5 years. It was bad but it was contained to that area and I was still able to do most of what I wanted if I really pushed myself. I didn't know what I had during those 5 years and I didn't understand why it hurt so much...I just wanted to live my life the way I wanted and to live it fully. My RSD was so much of a problem that I didn't have the chance to do that. I realize now that they were just stupid and stubborn attempts that always ended in tears and being told it was all in my head until I almost believed it. I don't know what made things suddenly change after that. All at once...within 2 months it spread 'like wildfire' from ankle to calf to entire leg to hip to lower back and left arm...9 years later it's now effecting my entire left side and recently my right arm. Nothing can be compared to the helpless feeling of it spreading and steadily getting worse without knowing when or if it will ever stop. I have seen mentions of the Ketamine coma in this thread and it reminded me of the weaker 'safer' Ketamine infusion alternative available in Canada. They give you enough to put you into a deep monitored sleep for about 5 hours a day every second or third day. The doctor was hoping that in waking up after one of these episodes the pain would be lessened or shut off and it wouldn't spread anymore. The first set of infusions were scheduled during a 30 day hospital stay and they were very successful in terms of getting me out of the wheelchair and walking with a cane. The second set of infusions weren't so successful and neither was the set after that and they were ended. Ketamine in general did help bring down the pain for a time and also I was able to do more than ever before directly afterwards but in my experience it's results were not lasting enough to stop the spread and I am back to square one now. I have heard success stories with it though...it can shut off pain in some if you can handle the brutal side effects. Anyway I wish you the best in your search for what works for you.

Yosh,

I actually don't mind it. I sleep on my back. I dial it down at night. I don't get shocks. It's like a buzz is probably a better way to describe it. People always compared it to an internal tens unit to me and it never felt like that to me at all. Most of the time I don't really think about it. I still take meds due to my arm, but luckily the legs are taken care of.

I know a lot of people here are divided on them, but without mine I was pretty much bed ridden (at 38) so it has pretty much changed me back to functional. Hope this helps!!

TK