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Complex regional pain syndrome

Posted , 24 users are following.

sandra291
sandra291

My son has had spontaneous onset Crps for the last 5 years and it affects his left foot making walking very difficult and the whole of his right arm from fingers to shoulder. He has tried numerous treatments with no improvement and is to ill to work. He lives in supported housing with a carer for support. I would love to speak to any other person who is in this position. I live in the uk

3 likes, 63 replies

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  • everstar
    everstar sandra291

    Posted

    Last year, I started having numbness in my lower left leg. It gradually spread to my entire leg, then my arm, and then my entire left side. I had a two-year bout with normal CRPS in my left knee that had ended a year before the numbness started. I've never heard of anyone having symptoms like me before, but my Pain Clinic doctors say it's just a strange version of CRPS. It isn't pain, it's just numbness and occasionally weakness in my back and leg, making it very hard to walk sometimes. I've been doing physical therapy for a good while now, and it's helped with the weakness significantly. Has anyone had a similar experience? I've had all the tests done. There's nothing else wrong with me. I just want to know if I should keep pushing to find out what this actually is or if I should just accept it. 
    • waelzain83
      waelzain83 everstar

      Posted

      I would get more tests and push your GP to get you a consistent diagnosis. Without a diagnosis, you can't be clear what it is or what it could lead to be.

      Before I got my CRPS, I had numbness and pins and needles. It wasn't painful, just uncomfortable. Now, I have had SEVRE burning pain for over 2 years.

      It is known that CRPS is best treated early, so I would get a diagnosis if I were you.

      Hope this helps

    • Cillasmum
      Cillasmum everstar

      Posted

      Hi as mentioned earlier I was diagnosed with crps in my left hand several months ago which is being managed with pain relief meds and Physio.  However over the last 3 weeks I am experiencing a numbness in my other hand and lower arm. Also when I get up first thing of a morning i find it quite difficult to walk as my legs and feet feel so sore and stiff and across my shoulders feels the same, this has been ongoing for about 18 months though. Going to make a doctors appointment this week so will let you know how it goes. I was talking to a friend who also experienced the same symptoms and she has been diagnosed with polymalgia? This can be diagnosed with a blood test. In the meantime good luck with your health and hope you find a diagnosis for your symptoms 
    • MSeeneev
      MSeeneev Cillasmum

      Posted

      I guess it's very individual as I don't get the pain what so ever (so no need for the meds) but it's mainly the sensitivity but slightly so am hoping if it is whatever this is we've caught it in time as I have physio next week.

      Find it really helpful with somewhere to talk openly about this. Thank you x

  • MSeeneev
    MSeeneev sandra291

    Posted

    Hi- I've recently suffered an intra articular distal radius break on my right wrist, cast on for 6 weeks treated and put back conservatively. Cast has been off for two weeks now and although a little painful do feel like I am getting somewhere. I had to have an MRI for my tendons etc. but at physio they advised I may have crps which has scared me crazy.

    I have darker hair around my hand but thought this was because of the cast on for a while. Under side is ever so slightly bruised colour (was darker) but not so much now. And yes I do have a little heightened sensitivity to that one tiny area but other than that no swelling, no numbness, no other symptoms.

    Can anyone advise if hopefully this won't progress or they stated off similar at all? Would appreciate any advice x

    • Cillasmum
      Cillasmum MSeeneev

      Posted

      Hi you may be experiencing a mild form of crps so hopefully you will be okay. Must admit when I was first diagnosed my wrist was extremely stiff and painful. It's now 8 months since surgery and wrist has lost some stiffness, still unable to make a fist, but it's still extremely painful. I find it difficult to accept that hand, strange I know but i feel as if I hate my wrist because it gives me so much pain. Still can't bear to wear long sleeve tops as it feels like too much pressure. Hope things go well for you
    • keelondon
      keelondon MSeeneev

      Posted

      Hi.. I've just come across this thread in desperation of some answers as to whats happened to me. 

      I too broke my right distal radius and after a manipulation of the break didn't work, I had to have surgery to insert two k-wires.  After 4 weeks, as soon as my cast was removed, I noticed this dreadful feeling around my forearm which I couldn't quite explain, almost like the air was hurting my arm.  In mentioning this to my Consultant he confirmed I had CRPS.... and that was that! 

      ?At this point I was just relieved to know it was "all part of it". 

      ?10 weeks later (6 out of my cast) no change with the pain.  I too have darker, raised, very noticable hair around my wrist area and my wrist feels really stiff still.  Movement isn't improving as quick either.  I'm

      struggling with flexing my wrist/palm back and forth. It's still quite swollen too, enough for people to mention it when they see me.    

      ?I'm having physio every week and my therapist doesn't seem to think anythings wrong.... I've just got to be patient!  I've spoken to my GP who has upped the doseage of my pain killers (which have no effect) but it seems theres nothing anyone can do about it.

      ?It's really getting me down... like really bad!  I just need to know if you're OK now?  It appears this post is quite old... but if anyone can relate to anything I'm experiencing, I'd  love an update on your progress.

      ?I'm desperate to know that I'll eventully get back to how I was before.

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