Mine started in my left ankle because of a surgery. I had torn a tendon and had screws put in. The screws started backing out and hitting bone and nerves, so they were taken out and I got CRPS. It has spread up to my lower back on the left side. So it is in my entire left leg from toes up to lower back.

Ya know, this sounds like real research.... Maybe we should gather all this information and pass it on. I am very much surprised at how many of us develope PN or RSD in left foot and calf. I had no idea. To whom can we submit our small but very real situations to? ginnie

Just a very important FYI ......our guidelines and terms of use strictly prohibit research for publication etc to be conducted on posts here, or to solicit members for research.

It is a fine line and so a member interested in researching information to help themselves or others is ok...but providing information to an "official" researcher or for a physician to use for publication would be a violation of our terms of use/ guidelines as well as a possible breach of copyright here....

I mention this as the discussion has gone from one where it was a member expressing personal interest based on something their physician may have mentioned to now taking a bit more of a formal research turn, which is not allowed. This is not to inhibit new research but to maintain the mission statement of these forums, where members should feel safe to discuss their health issues without concern that their info is going to be used without their permission etc etc. The ramifications of formal research go beyond the scope of what I can post here...and so I do caution members not to cross that line please.

I saw that the board rules said research wasn't allowed, so that's why I didn't put "research" in the title. It was more of a "hey, my doctor mentioned a very interesting little bit of info; I wonder if it is the same way on this board?" kind of thing. I wasn't going to provide him any type of formal research info or anything. I'm sorry if I crossed a line - I'll be more careful.

Just to confirm...you are all very welcome to keep discussing this here It seems interesting and potentially important info

Just not allowed to collect research data for publication for yourselves or any third party.

Mine started in my right foot after I stubbed my toe. Hard to explain to people that I have this incurable disease because of stubbing my toe. (sigh)

Regarding the 'research' chestnut...

Can I just say that as someone who has only had this damn condition for two years, I would be prepared to help in any way that might forward the thinking on CRPS. It is such a vile, unrecognised, misunderstood and cruel thing to have, and with something 'rare and special' like this that so many doctors and nurses have never even heard of....education is the way forward. Maybe this little thing might spark an idea in someone who can actually do something about it.

I do understand that people don't want their personal details given to another party without their permission, I wouldn't myself! But a straw poll like this on a site where our personal information is hidden unless we choose otherwise, is surely harmless enough. I'm sure the OP wouldn't pass on any extraneous info.

My doc asked me the other day if I would be prepared to have my records read by a research student who had a special interest in CRPS and was working on a new approach. I said 'crumbs YES, give them everything!'. She asked me if I might perhaps even be willing to talk to them... I said 'yes, anything, I don't mind being examined, my records read, anything that might assist in any way at all. I can see them as soon as they like!' (I appreciate that there are many of you who do not feel the same, and that is perfectly understandable considering the nasty symptoms of this thing.)

CRPS research and treatment is so confused and stagnant. I've read many research papers and it is clear that there is no consensus on approach, and most doctors have their own ideas and methods of treatments. They are not all right, and some do terrible harm by guessing what to do. Ideas that might lead to something tend to come from groups of individuals with a common purpose or understanding, rarely from an individual - it is only common sense that a doctor might take one person's account with a pinch of salt, but evidence from a similarly affected group as important evidence.

This disease isolates us all in many ways, and for me this site is the one place I know you all understand what 'burning pain' is... How many of our doctors even write down all the things we tell them? How much of what they do is passed on and discussed between their peers? Very little is my guess.

Hope everyone has a good day today

Bram.

Mine started after surgery for median nerve entrapment. Left arm/hand.

Good Topic-

That is interesting because mine started in my left foot and spread diagonally(sucks)- I've read about a lot of people who have indeed said it started in the left foot. Anyone have any idea as to why that might be? Maybe the left side of the body is more vaunrable than the right because more people are right handed than left and everything is made for the right side, so the left side might be left vaunrable to other things that the right might not? I know that sounds weird, but if you think about it, it makes sence- (I.E: there are more accidents with left hand turns than right.) Or, like you said, the nerves(& Muscles) could be the answer themselves- they might control a specific body task on the spinal colmun and the mutation of the CNS (i've read about) that occurs with CRS/RSD makes it worse or spread. I know that things like sleep can be effected, like, one place I read said that RSD mutations of the CNS(Centeral Nerovous System) cause the person to be unable to go into full R.E.M sleep. R.E.M sleep is Rapid Eye Movement part of sleep when you dream and it consists of a "V"(if you will) of a full 90 minute cycle- 45minutes till the center of the "V" and 45 minutes to get out of the "V". Well, if the CNS is mutated and doesn't allow you full R.E.M sleep, that means that you are not reaching the deepest part of sleep(the center point og th "V") that a person needs to dream and function, then you are not getting a full nights sleep.

This may also have an effect on where it goes in the body (besides how you were injured/got RSD) because the mutation may happen right away- I don't know, but it's a theroy. I hope it makes sence.

My rsd started the exact same way as yours FYI. Torn tendon screwed, didn't heal, pulled the screws, even worse. Now I have an awful foot drop and full body. They are also testing for ms. It's dumb in my opinion because they can't "definitely diagnose" without an MRI. I can't have one so why bother with more procedures and tests. I'm just tired of all the tests. Leading back to..rsd. I have the worst balance issues ever!! I can't walk 2 feet unassisted. Sad, I'm only 38.

How are you doing? Do you have worsening? I'm going to go back and read since our dx is about the same.

Take care and wishing you low pain!!