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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hey there and welcome.

I'm Kris, and have been diagnosed since Dec. '10 but my PT was telling me before hand that was what he thought, it just took that long to get into a PM dr. to get the official word. This all started after a slip and fall incident with an external fixator on. I have had 5 ankle surgeries. This was before #5 for the removal. I was doing great with the ex-fix and then fell on a slippery dirty floor and banged the fixator causing intense pain. I ended up with osteomyelitis thanks to the pins getting the dirty water in them and RSD from the trauma. I had surgery March 1st for the osteo in my tibia and that caused the RSD to spread to my entire leg. I then went on IV antibiotics and got a picc line put in and then out (due to blood clot) and then a new one in that hit a nerve or something and guess what! I have burning and sensitivity in my left arm now. FUN.:jester:
So I've had so many sympathetic nerve blocks I can't remember. I average one every 9-10 days since Dec. I've tried Lyrica (allergic), Neurontin (became a zombie) and now I'm on zonagran, it may be zonegran, I don't remember. Anyway, it is making me sleepy too, but I'm trying to hold off and see if it will go away. Burning is still there, sensitivity is still there. My left leg/foot is defiitely a different color than my right. As for other symptoms, I can't sleep! Part is the pain, part is my mind is wired and then the meds make me sleepy and I'm just in a weird cycle. I am losing my memory, but how much of the brain fog is from sleep deprevation vs. RSD vs Meds, I don't know. I also get this funky rash on my leg. It looks like a doily (lace) pattern of red under the skin with white where the holes in the lace would be. It comes and goes. I notice it more when I'm hot.
My foot feels cold and yet burns at the same time. It is numb, yet painful at the same time. My toenails have slowed down growing or stopped on that foot. The hair on my foot leg started growing dark and fast. THe hair on the foot (never had hair on my foot before) stopped growing now, but the leg is like a 5 o'clock shadow!
I do not like air conditioning on my leg/foot. I have had an increase in headaches.
I also have gained weight with no explanation because I'm trying to diet and also I'v been exercising on the bike more to keep my legs strong so I can walk.
Hi Lyza,
My name is Kelly I am 41. Was dx march 2010.
I had surgery to remove a mortons neuroma from my left foot. It never got better only worse and worse.
My RSD has since spread up my entire left leg I can not bend or flex any of the toes on my left foot anymore.
It has also spread first to my left hand and arm( I was given nerve blocks a week after spread) and havent had any real bad issues with my left arm hand sense the nerve blocks.
RSD then decided to spread to my right arm hand fingers and shoulder, after a nurse went right through a vein in my hand trying to put in an IV.
I did PT for months no good.
I had a spinal cord stimulator implanted Dec 2010. RSD spread to my incision sites and also to my optic nerve causing me get uveitis iritis in my eyes.

OK quirks
finger and toenails grow insanely fast and are rigid
I get the color changes blue in foot and deep red purple with white spots in right hand /arm
Cant fall asleep without my restoril and zanaflex cocktail
and always feel on edge( the whole fight or flight reflex runs 24/7)
My period has gone crazy maybe once a month or surprise every
other week, I also get bad flares during this time.
I used to have long black hairs on left foot and leg they have disappeared, and surprise reappeared on right arm.
funny about the migraines, I had chronic migraines for years and was on maxalt before my RSD. since RSD has stepped in I havent had one migraine (odd?)
forget everything.
oh also there are times I will forget I am holding something in my hand, I have had to go back to stores and say I forgot to pay for this because I didnt realize it was in my hand.
cant get the right words out when trying to talk I am always goin "umm umm shit you know"
get very mad very easy
get very sad very easy
Oh and lost 40 lbs in like 3 months even on neurotin and elavil.
k well that all I can think of right now

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