Hi Liz,

Thanks for your reply.

We have decided to move travell to Germany on Monday. They should have all the equimpment there hopfully.

Right now im still chasing a diagnosis as quite a few doctors dont think its RSD (not sure they know too much about it) they all claimed that i have the symptoms but not all of them and not too an extreem. I have explained they they have been worseing as time goes by but anyway....

Was hoping maybe anyone hear could help me out and discuss if thier RSD developed over time perhaps or if all the symptoms come out straight after the injury rather than creep up over the weeks...

My daughter's RSD start was swift and immediate. Had a swollen hand which they thought was MRSA, went in to operate, the next day her hand/arm were extremely swollen, very painful to the touch, color changes etc. Over time it has evolved but the symptoms were just as bad in the beginning as they were during her worst flare. She has been pain free for 6 wks 4 days now with inpatient ketamine infusions.

Liz

nigel, I'll take a shot at your questions. Keep in mind my opinions are my observations of my wife and what I've retained from what doctors have said and what I've learned from others through the years. Others may disagree.
"Stretching & Muscle tensing"
This is a sign of RSD however nerve damage I think could cause this also.
"Ice (prefer warmth over cold)"
If you are referring to placing ice packs, heating pads on sore areas this is not something that is advised to apply to RSD injured areas and nerve damaged areas. I've heard in most cases do not do this especially ice packs, however I've heard some have had little relief doing this but not many at all.
"Lying-Walking"
Those with RSD suffer all the time whether it be laying down or walking.
"Any poition out of a seated position with my knees at 90 degrees comfortably"
Now, this is where I think you may have trapped nerve issues not RSD. My wife never experienced any relief at all positioning limbs with significant relief. I've never read any RSD info pertaining to this.
"Car rides (althogh im sitting down, my knee is not relaxed at 90 dergrees relaxed. insted the position makes me feel like im stepping on a frying pan!)"
My wife doesn't like riding in vehicles because of the bumps the cars takes. It's not the sitting position so much as bumps in the road or taking corners, even though we own a large Cadillac. Even the stress of traffic will trigger my wife's RSD pain more so than the bumps even though I'm the driver.
"Doctors manipulation (pain reaction the follwoing night)"
My observations are manipulation of RSD areas trigger immediate pain-flares that may last days.
"1. Does the pain in the particular limb aggravate in certain positions (eg when extended) and calm down in more comfortable positions?"
I would say no.
"Does the discoloration in the affected limb go once elevated or when mobilizing the limb?"
In my wife's case, no.
"3. Is its possible to have RSD and not have abnormal swelling in the area?"
Yes. My wife's legs swelled from RSD around 2-3 years after she broke her wrist in which caused her RSD.
"4. Is it possible for some symptoms (eg motty patches, redness and abnormal heating) to travel to the other leg, however not experience alot of pain in it?"
In my wife's case yes, the RSD can spread, even though many doctors think it doesn't, It absolutely does, however so does severe pain!
"5. Is it normal for the affected limb to jump/tick when trying to fall asleep?"
Yes, I've seen this with my wife, but my hunch is so could other conditions cause this especially nerve issues.
nigel, there are some doctors here in the States who think that one with RSD must show all signs of the disease in order to make a diagnoses, if not one does not have RSD, however this is false, most people with RSD do not show all signs of the disease at the same time if ever. Different signs of RSD pop up during different stages of the disease through the years. Also, there are doctors who think RSD does not spread. This is also false, it does spread for many, for the minority no, for most--yes. I hope this helps and good luck in Germany!!

jim&suzy

Hi Liz,

THats great that your daughter is now pain free!

My I ask what was the cause of her RSD was and how long she had it before she got her ketamine and was pain free?

Thanks,

Nigel

Thanks alot for answering my questions, As I am understaing, i do have symptom of both RSD and a trapped nerve, hopefully not both Unfortunatly the pain and symptoms keep builing daily...cant take much more In two days I will be in a very advanced hospital to undergo further investigation...In the mean time, I was wndering weather I should do some more research and see if there are any RSD specialist in the Hannover area to be on the safe side..Does anyone reccomend any RSD doctors/clinics in Germany?

Nigel, did you check out those websites I posted earlier? Search them closely there should be info you seek.

Hey Jim,

Yes I did look at them quite alot however didn't manage to find a list of available specialist/clinics around Europe. Only found the clinic in USA of Dr.Kirkpatrick.

I am currently trying to find a specialist in Hannover but its not so easy

My daughter has had RSD since March 2009 and got it from a surgery to remove a blood clot.
Ketamine has given her more relief than any other thing she has tried in two years.

Ketamine seems to be the best thing out there! First I have to find the cause of the injury and take it from there...no point on going on ketamine without fixing my problem/injury (trapped nerve etc) or would it?

Also wanted to ask weather the peripheral nerves in the affected area of RSD also cause pain or would also be more sensitive to press ets...?