Spreading like wildfire :(
 

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.

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 ?

Keep the faith young one.
 

Good morning my young friend,
My name is Andrea and i am in the 21st year of RSD. I live in Daytona Fl. There was no time frame for me as far as the RSD spreading. It was almost 5 years before I knew it took my left arm after a right ankle injury in 1991.
I was stirring pasta, I'll never forget it. As I turned the spoon I felt a burn and stab in that hand, kinda like a bullet just hit me. I put down the spoon and fell to my knees begging God to let me be wrong. Time and pain went on and in 1997 I was deemed System by Dr. Hoosmand of Vero Beach.
My Thermogram showed no legs or arms it had gone that far with the hypothermia effects.

I know there are allot of new treatments out there, so keep the faith and hang on for your miracle. PLEASE keep me posted as to how this treatment works for you. Will keep you in my prayers.
As for hope with the medical system and RSD...I prefer alternative care. I have been pocked, cut, stabbed, pricked TOO many times with no permanant results of releif. The more invasive the worse the result for me.

One thing no one will ever do again is a nerve conduction test on me. That is an inhumain test and especially on an RSD body. I would rather get struck by lightening.
Beings my injury was a work related issue I had to endure every torture test the the medical profession had to offer. The last was 3 days at Wake Forest Medical with 10 hours each day filled with tests that proved only that I did not have MS, MD, Palsey,P.A.D issues Yadyada....never, oh yes it is RSD.

So dear friend, keep the faith, but do hold sight of reality. Your mental state has allot to do with this monster too. It will mess with you but you can stay ahead of it if you are on guard for it coming at you like a tornado.
Be good to YOu, and find happy people that keep you up and laughing.
Those laughter endorphins are magic when you use them.

As for RSD not being as important as cancer, or a lost limb, etc...
The discrimination can really make you nuts if you let it. You have to make yourself NO. 1 and hold tight to the truth you live with. God knows how we suffer and it will be by His grace that we are healed. Keep the Faith.
God bless you and keepyou strong. Peace& LUV, Andrea:cool:

Well put and true from living in The Dark Age.
 

Hello, got a good giggle out of your reply. Unfortunatley,You are right.
I developed RSD in the Dark Ages. 1991.

I am 21 years with RSD. If I had a dollar for every doctor I had met during this time that had never even heard of RSD, I could go but a new Corvette.
I had one tell me to my face in his office,"OH, I must have slept thru that class." I had to just walk out, I was going to beat him in the head with my canes if I didn't.
Yeah, my title after doing the home work and representing myself in court after the 12th year, 16 years of workers comp doctors torure was "Confrontational Client". Every hearing deposition alike, same heading.
I had come too far and worked too hard to sit down. They all knew they were blowing smoke..they needed the paycheck so drag this on...
It got real old.
You have to learn the game to play the game and it is just that, A Game.
(usually) It took me 16 years, one of the longest running cases in Pa. but I won. The Judge shook my hand and wished me well. God bless him.
Hey sorry for running on here, but my coffee kicked in and it is so great finding you folks. I have been too poor the last couple years to have my computer on line. I have some catching up to do.

As far as the Katemine? They did have some 100% sucess rates in the mid 60's using LSD as treatment. Same deal, new drug that the system can make more money with. Naturally the FDA could not have anyone using LSD.!

Have a blessed and easy day. Peace & LUV, Andrea.:cool:




e.

i am uninsured/self pay,i cant afford ketamine and spent the last year going through doctors like hot cakes.. hoping this new one will be better..

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