spread question
 

I have crps in my right forearm/hand and its a wc injury related issue.

For the last several weeks I've been having issues with my right leg. Burning pain, swelling, blueish, cold, I'm up all night screaming crying in pain honestly at times I'm looking at my crps hand thinking aren't you my affected appendage!?!? Last night was the worst, I was up all night even the blanket hurt my leg. Can it spread to a leg and not mirror the other appendage? I always assumed it would if it were to spread go to my left arm. I see my wc Dr soon and I'm currently ttd but she's not going to want to treat my leg for sure! I am under the care of a more well versed (albiet controversial per the front page of this forum pain management doc in southern California) who may help me fight wc. I have an appt with my own neurologist tomorrow because I'm currently also dealing with pseudo tumor cerebri, and she is well versed in crps as well. But like I said I thought it would go to my left arm if it were to ever spread, what's wrong with my leg!

RSD spreads in very strange ways...I originally got RSD in my left leg and then it spread to my right arem and now it is in my right leg mirroring EVERYTHING in my left leg. Every case is so different and that's why it continues to baffle even the best doctors..make sure you write what is going on down and try to be specific so you don't leave anything out no matter how small you may think it is...hoe this helps some :)

There are I think generally 3 ways that RSD spreads...it can spread in a mirror fashion, it can spread along one side, and it can spread to a completely different place. Different things can cause spread too...like trauma to a different area once you already have RSD. Like everything else with RSD...it seems everyone is different. I hope your doctors are able to help you with this...sounds like you have quite the team of doctors working with you.

It defintely sounds like spread, mine is on my right lower extermity and everything you describe I have. Blankets, sheets, etc. feels like a cement block. My foot is usually colder then the other, or it feels cold and is burning up. My leg feels like it is in a vice grip esp. when weather changes more then 10 degrees. Sorry, I know that is not what you wanted to hear. I would defintely ask for an increase in meds. Maybe you can get a couple hours worth of sleep. I do my best sleeping in the recliner.

Jimsgirl,
After reading your post and all the responses I say to what Alt said ditto.
My RSD is spreading much the same way. Now both feet are tingling then burning along with my left leg getting the vise. Make sure you relate all of your new symptoms.
I know through my experiences that RSD can spread.
I hope the best for you...:grouphug:

Hi JimsGirl,
Unfortuantely...rsd has a mind of its own and does what it wats to when it wants to:.( Sorry. My first thought would be did you injure your right leg in any way so that could be the reason it hurts more now? My second thought would be where you live is a storm/rain/snow on its way? I know my pain really acts up about two days before ANY type of weather change. I live here on the east coast and my body has been in increased pain for about two days now...with today being the worst. I know the midwest is in the middle of a blizzard...so it could be weather related (I hope and pray it is).
I think you said you were in So Cal...I know you had some problems with Santa Anas last week and I believe I saw some rain in that area???

I have dealt with them for over six years now and their original doctor (a former Pain Mgmt doctor for ten years) said rsd didn't spread which was untrue. So you make sure to let them know if it did spread then they need to document everything. Very important. Unfortunately mine spread within four months to full-body which is pretty rare (only 7% go full-body). I like to "Go big or go home!" lol. And I have talked to people who have it in one body part for 5 years or longer and it never spreads??!! So, take a deep breath and breathe in and out. If you get yourself upset it only makes rsd worse and your pain worse. Try to get some sleep. It is very very important to try and get rest. If you can't do it at night then sleep through the day. Whatever you find works for you! Hang in there and take it one day at a time. Let us know how you make out at doctors.
kathy d

Sometimes, like right now, my ankle on both feet feel stiff like they don't have the ability to bend...:(

Jimbo

both burn and my right won't bend. AM or after naps neither bend. Now winter is here/coming and it is just the pits. Nothing works, esp. the old brain from all this crappin medication.

Oh the dreaded w word...:(

In the research study called "Patterns of Spread in Complex Regional Pain Syndrome, type 1 (reflex sympathetic dystrophy), they identified 3 distinct patterns of spreading CRPS, but they described 4 patterns in total, they are contiguous spread (CS), mirror spread (MS), independent spread (IS) and disassociated spread (DS). This research was a very important addition to my 'spread apeal' with WCB along with doctors reports, and innitaly my doctors only wanted to listen to WCB policy that it didnt spread as well, this research helped put things back into proper perspective and got my doctors researching spread too.

http://www.rsds.org/pdfsall/makeki_l...chwartzman.pdf

In this study they explain how it is possible to have more than one type of spread at the same time, and how aberrant CNS generation of neurogenic inflammation likely plays a roll in the initial presentation and the spread of CRPS type 1.

I am sory you are having to deal with spreading, for me it has gone from my right foot to full body.. though in increments. I have fought wcb on every issue and won most of my battles, because in my appeals I provided the medical research as well as the evidence of my medical records and doctors reports, they finally accepted CRPS in all 4 of my limbs when their original mandate was that it did not spread, where I am located (then).
Good luck Jimbo and be aware there is now a lot more research like this out there too.

_ Sandra