been told i have complex regional pain syndrome and i no nothing about it.

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hey folks, i had a very large DVT in my left arm a couple of years ago and have been left with damaged nerves. ive been told i have crps and i have no idea if some of the feelings are crps or not. here are some of the feeling i have;

burning up my arm like its on fire

a constant dull ache

pain when i move my fingers

pins and needles

high sensitiveity to heat, cold, or if i bang my arm on something accidently

sometimes severe cold feeling in my whole arm with the feeling going right up and into my neck and lower jaw.

plz help, ive been diagnosed with fibro as well 

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5 Replies

  • Posted

    Hi Claire, I also just got told a few weeks ago that I have crps and don't really know anything about it myself apart from what I have read on this site, I had a knee replacement last September in just 1 morning I woke up to a lot of pain and it was really hot to touch and it's really swollen and not able to bend my knee so I have to wait now till September to get some scan can't mind the name of it, I've been referred to a pain clinic so still waiting to see someone, do you have Facebook in we can talk on that my name is Elaine Traquair take care x
    • Posted

      Hi Elaine, i had a massive blood clot in my left arm, it left some nerve damage. it was nearly 2 years ago. im hopefully goin to be seen at the pain clinic in may. I get a burning feeling in my arm, sometimes it feels like it is going to burst. it changes colour and goes quite a deep red/purple. i also get a very cold feeling at times, this feels awful and a lot more pain with it. Ive had MRI scans and CT scans done but they didnt help with diagnosis, they lot me know what i didnt have. Apparently crps is very hard to diagnose. I feel a bit apprehensive about going to the pain clinc, I just cant let them stick any needles in my arm, its unbearable. Are you on any meds for your crps? . i'll look u up on facebook. x
  • Posted

    Hi Claire,

    All I can say is these are the exact symptoms of CRPS.  They are the symptoms that I have, only with the distinction that mine start in my foot.  Since you've been diagnosed, aren't you on some kind of medication?  Most people with CRPs are on gabapentin or lyrica or possibly elavil.  All 3 of these drugs have been prescribed for me, and they help to a certain extent, but then the drugs themselves create some unwanted problems.  It is difficult and can be disheartening.  Since I've been on the gabapentin for 6 months now, I am rarely in the heat, but almost always in severe cold, which is easier for me to deal with.

    good luck to you.  I have no idea if this will ever go away, but I am improved since I was first diagnosed.

    • Posted

      Thanks violet, im on lyrica and amitriptyline. They help with the pain but im am dizzy a lot of the time. Don't know if that's a symptom of crps or the meds. Im encouraged to know that you feel a bit better. I'm for the pain clinic in may, I hope they will be able to advise me what If anything i can do to make me feel better.
  • Posted

    Hi Clare I had a car accident 7.5 months ago,which resulted in a crush injuryin my foot. I was then told I had a DVT in my leg after that I was told I had CRPS.It started in my foot but has now sread right up to the top of my leg .I had a nerve block just before christmas but am still in horrible pain ,waiting to see the specialist and hoping he can think of some more treatment.

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