Percentage of people with RSD that have it in the foot
 

I was talking with the doctor that did the Calmare treatment on my daughter and on me, and he mentioned that in his experience, a large majority of people started with a foot injury, and of those people, a large majority of people started with the LEFT foot. Reading these forums, I seem to see a lot of RSD starting in feet, so I thought I'd ask the people here where their RSD started, just out of curiosity. It might even lead to something helpful in treatments - any new information can be helpful. If it really IS a large percentage in the left foot, maybe there's something unique about circulation or nerve wiring or something like that ...

Slo, my original injury was on my left leg it now goes from the tip of my left big toe to mid-high left buttock. Mine started when a cow (yes a COW:eek: ) fell on me LONG years ago. My ortho would tell you I injury my left side about 19 times over 1 on the right. He would also tell you that for an old nurse I seem to get injured in the most odd ways :( most of them have involved livestock vs nurse encounters. I did take a nasty fall one time and dislocated my shoulder (left of course) 2 weeks after he took the external fixator my lower left arm ( nurse vs cow again) I have been "fired" from helping out on the ranch for the most part (unless they need an experienced person to show the ranch hands what they need to do, they tend to get more involved when the old lady can do whatever they are supposed to be doing :D

Hello, pooh_ac! Is your username from Winnie-the-Pooh? I love the original (NOT the Disney) illustrations - they are so lovely. And the stories are so cute! Enjoyable for all ages, IMO.

OK, we are 3/3 as far as left foot (I forgot to put in my own statistics - I had RSD in my left foot after surgery, and my daughter got it in her left foot after a stress fracture).

"nurse vs cow" - :D :D You need to try to pick on someone your own size!!! :D My original injury was pretty weird, too - it was mom vs. son-jumping-out-of-truck-into-his-wheelchair-and-it-shooting-backwards-and-hitting-her-foot. My son has caudal regression syndrome, and he has little stubbies for legs. He is very active using his upper body and leg stubbies, and he loved to jump out of the car into his wheelchair while I held it still for him. We did this hundreds of times, and the ONE time when I turned my head right as he was jumping, my foot slipped, and WHAM it shot backwards and hit my foot and blew off the big toenail and tore 2 tendons. I walked on it for a year before they finally found the problem, and then had surgery, and then developed RSD for a couple of months and was on the point of getting my first spinal block when I tore my shoulder (rotator cuff) and had to have shoulder surgery, and the RSD in the foot went away.

But nurse-vs-cow sounds funnier :D

Thanks for sharing the info - I hope more people can chime in because I think it's pretty interesting. My daughter was wondering if the people with the left foot as a starting point were all right-handed, because the numbers seemed to be about the same as right-to-left handedness. Are you right-handed?

Oh this made me laugh ironically....:winky:

My CRPS started in my left knee after a minor op (sorry it wasn't more glamorous lol!). It then spread to my left foot, and then spread out from my knee to my whole thigh and upper calf. It has also crossed over to the toes of my right foot.

My left foot is the biggest problem for me now, although my knee is still swollen, painful and weak, the pain and burning are far worse in my foot. I too have noticed that the foot is a common place for CRPS to affect.

Interesting....:rolleyes:

Bram.

So far we are:

4 for 4 for starting anywhere on left side
4 for 4 for starting lower left limb
3 for 4 for starting left foot

Hello! Mine started 22 years ago in the right side of my face after biting a rock that was in my food at a Mexican restaurant then having major dental work done to repair the damage (lost 3 teeth after root canals and ended up with implants:eek:) I hurt my right hand in 2009 and developed it there, it mirrored over to my left hand. Had a venipuncture injury in my left arm and it spread there. Had a spur removed from my left shoulder and it spread there and somehow down my left leg and into my right shoulder. I hurt my right foot Dec 2011 and developed it there, then it mirrored over to my left foot. It has since gone into my abdomen and head :(

My wife's right broken wrist.

My left ankle after my left foot stuck a steel plate at work. General opinion from the docs is that the initial injury was a sprain of my left ankle that turned into RSD, then spread up to my knee and also to my upper body after a LSB.

my initial injury is my right ankle, then to right foot and up the leg to calf. Been fortunate spread as been minimal.

Mine started in my right foot after a fusion surgery on my big toe.

Hmm, some rights chimed in, so we are at :

left side - anywhere : 5
right side - anywhere : 4



Lower left : 5

Upper left : 0

Lower right : 2

Upper right : 2


(if I'm counting right, that is) well, so far it's pretty evenly split left to right, but so far it's a small sample size ...

Thanks everyone for sharing!

Mine was lower right tendon repair. Now, it's in all four and I'm being tested for ms. But mine spread to hips in both lower extremities.

TK

For the record, my dr thinks my rsd had started before the surgery so the repair aggravated it. :mad:

Left foot!

Started there then went up the leg to my hip across my pelvis. It then crossed over to my right foot. Somehow it also landed in my left eye.

Mine started after I fell while roller-blading. I had all the gear on. Thought I was pretty good at it. Had just learned a month before. Being over confident, I was zipping along too fast and hit a pebble or stick (?) on the pavement. Smack! Landed on my left side. Ruptured L5S1, fractured my left hip, which eventually caused a stress fracture in the base of my second metatarsal in my left foot. The CRPS hid out there till about 4 years later.

The cow story is by far the best one I've heard yet!

Lately I have been having trouble with spasticity in my hands/wrists. I see my Neurologist on Friday.

Hi sloRian
 

I have heard this too. I know I have PN, but may have RSD in left foot and ankle. Had no correct DX of Anterior tibial tendon disfunction. MRI showed 5 years later, three torn ligaments-tendons, not healing right. Had two surgeries for ganglion cysts that the roots were going into my joint in the ankle. I now have two more, and can't have the surgery because of the PN or RSD. I am better however as I have tried B12 shots and use the pain patches. I also had no fall or injury to account for the injury to my foot and ankle to begin with. Just adding information here, about where this started on me. I hope and pray it never spreads. ginnie

Mine started in my left hand after a burn injury. I kind of blew myself up!!! Its spread up my left arm, into my right hand, My entire Left leg and Right foot. WHen I have a bad day, I feel like its in my entire Left side.

Im also Left handed. I also wonder if there is a link between sides that get injured and what side you favour. I know I hurt my left arm because I naturally used my left arm to protect myself from danger. I Might have burnt the entire lenght of my arm, but at least it saved my face from much harm.

Mine started with the left inner ankle then spread to the left leg. Then spread to my left foot and right foot plus the toes and then the calves. The feet and toes have become horrible and of course the original inner ankle. Then the condition spread to my arms but to a less degree. At one time they thought I had it in my eyes. I also have PN and RSD

Started in left foot 30 yrs ago, into my ankle and up to mid calf now.

I have RSD in my left foot. The excruciating burning pain is eating away at me. I have lost the use of my foot. Mine came about after I was in an auto accident. I needed spinal fusion and immediately following my surgery my foot swelled and the pain never subsides. It has affected my enter life, left me permanently. I am at the mercy of narcotic meds...but the drs don't like to keep raising the dosage, meanwhile I suffer.

I'm so sorry that we're all here with this diseases :( but am grateful for this forum to share ideas and sympathy. It's amazing how when you're healthy, you just have no idea that there are all these people out there with all this pain ...

Updated info:

Lower left : 10
Upper left : 1
Lower right : 3
Upper right : 2

Feel free to check me, I could have missed someone. I'm basically going for where did it START, not where it is now. And it's definitely swinging towards what my doctor said - mostly starting in lower left. Obviously, this is a small sample size, but it might be the start of something triggering in some researcher's mind somewhere. I'll get this info back to my doctor when I get a few more people, since he was the one that first mentioned it.

Fantastic stuff. Absolutely ANYTHING that might point a researcher in the direction of new CRPS information has to be a good thing! :)

Just a thought tho, your thread title narrows the field a bit - might be an idea to rename it if poss to "Research info please - where did your RSD/CRPS start?"

Thanks.

Bram.

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. :(

about research
 

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:hug:

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...:winky:

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' :winky: 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-Post: 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. :grouphug:

Angelina55
 

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!!

:hug::)

Hi Bram
 

I re- read your post this morning. My conditions for PN or RSD has not spred much so far, and for that I am grateful after hearing about how bad some of us get. I can tell you I am scared however. I am taking suppliments and thats about it. Some pain medication. Even if we agreed to give our doctors access to our cases, I am not sure there is anywhere in the country that is acvtivly trying to do something about this horrible CRPS. If there is, would you let me know? I would play guinee pig gladly, if I thought there was a chance that this could be resolved or cured. My doctors are worried for me. I have another two ganglion cysts on the ankle. The roots of it are going inside the joint of the ankle. I already had two removed and had the torn misdianosed tendon problems. They can't do the surgery because of the RSD or PN. They arn't making me go for the tests, as in either case surgery could make this worse.
Do you know anywhere, that real research is being conducted? Can you tell me what journals or articles you have read that might shed some light on this? I appreciate any information.
I am sorry you go through so much with this condition, and of course all the rest of us who are miserable with it.
I don't want to go back to a wheel chair, and just am wondering if there is anything more I can do for myself.
The suppliments seemed to help, especially B12 Shots. ginnie:hug:

Hi Ginnie
 

Im sorry you're having a rough time, I don't think it's possible to stop worrying about CRPS/RSD while it is still active, it is just too intrusive. I only recently got my most current pain increase under control by going back on Lyrica....I was gutted because I'd got off the meds for a month and thought I was doing ok. Turns out it was just that the darn Gabapentin I'd been on wasn't doing anything anyway.

As far as research and stuff goes, I'll try and find some specific papers, but I haven't always kept track of which ones I've read. I know that there ARE some very dedicated scientists researching CRPS on the USA, more there than here in the UK I suspect! We can't ever give up hope that someone will find a way to help us more than they can now. It's the lack of useful pain relief that distresses us most I think, even their 'mega' pain killers like morphine just don't do much. The pain is the frightening thing simply because so few people understand how bad it can be. Everyone thinks they know pain...:rolleyes:

Sorry, I know this isn't the thread for this. Take care of yourself and hang on in there.

Bram. :grouphug:

The Useful Sites and links sticky thread does have some research info as well http://neurotalk.psychcentral.com/thread247.html

Maybe start a new thread if you wish to discuss existing research and resources so as to keep this one on topic.
thanks

Left foot for me, after a simple stress fracture.

Hi jennq
 

The more people that state something like left foot fracture etc, the more weird it gets. I had three torn tendons and went and got two ganglion cysts removed. That did it for my left foot too. Sorry all of us have go through it. I am on B12 shots and it seems to help. Pain meds too. Take care Jenn. ginnie:hug:

Updated info:

Lower left : 13
Upper left : 2
Lower right : 4
Upper right : 2


wow, those are definitely statistically significant numbers, although the sample size is low. *edit*

My daughter also brought up the handedness relation - she suggested *edit* should track if the people that had it in the left foot are also right-handed.

My daughter just got some bloodwork done today - I'll see if they checked for B levels. I've heard that from a few people now ...

It started in my left knee from a fall. I now have it in my left ankle and foot as well, along with my right knee and left wrist, all due to spreading over time.

Mine started in my right hand/wrist following wrist surgery.

I am right handed.

Updated updated info : ;)

Lower left : 14
Upper left : 2
Lower right : 4
Upper right : 3

(although I probably counted wrong ... :eek: )