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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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  • violetb
    violetb sandra291

    Posted

    Hi Sandra,

    1.  it is often times the case that CRPS strikes for no reason.  I know it's crazy.

    2.  I have CRPS as a result of surgery, but weeks and weeks later it just appeared.

    3.  I have been on gabapentin for 5 months now and started almost immediately when the pain started.  I have definitely had improvement on the 'hot' side of things.  My foot usually does not get hot enough to fry an egg on anymore, but feeling extremely stiff, cold, numb, pins and needles continues non-stop.

     

    i feel so sorry for your son.  I feel like a shadow of myself, but I am 63.  I sure hope your son does not have to live with this condition.

    Anyway, if your son isn't on gabapentin (neurontin) then suggest it to your doc.  other drugs that work for some are:  lyrica and elavil (amitriptyline hcl)

    Good luck

    • sandra291
      sandra291 violetb

      Posted

      Thanks for your reply. However you got your Crps following surgery where as my son has no accident, surgery or illness and that is why his is so unusual. Even though we have been to specialist centres they also see very few cases where it just happens and to the severity that he is affected. However he is coping with day to day life even though it is a struggle at times
    • carol91733
      carol91733 sandra291

      Posted

      Ps I never got the back surgery until after the incident with the ankle so this all started from damaging the ankle? Do they think they can't help your son further?
    • eva96035
      eva96035 violetb

      Posted

      My son experiences extreme cold sensitivity and swelling to his leg and it is affecting his whole body he says the pain is hard to explain but he says his skin hurts and that he feels exhausted all the time. It's hard to see him like this as he has always been a very active young man and always so strong and I hadn't seen him cry in a very long time until yesterday and this broke my heart knowing I am helpless and unable to take away his pain as it's affecting his whole body. He's so young to be dealing with this debilitating illness. My hands are tied and I just don't know what to do. Please help with any information that anyone might have.
  • linda43575
    linda43575 sandra291

    Posted

    I broke my wrist just about 6 1/2 weeks ago. I did not need surgery even though the fracture was hard to reduce.  Like Cillasmum, my cast was very uncomfortable and I did go back and have a soft cast put on fit the last 5 days. My hand has been extremely swollen and stiff, hot and shiny. When I had the cast off last week, I was told the fracture has healed but the I had nerve pain and needed to see my GP to get some drugs to help. The doctor I saw showed me the letter from the consultant written after 12 days, mentioning CRPS, but she didn't know what that stood for. I looked it up on the Internet and it has scared me. Amitriptylene is helping but my wrist is uncomfortable in a support and agony without. I am 61 and was very active before this. Now sit here crying a lot of the time.
    • carol91733
      carol91733 linda43575

      Posted

      Aw... Linda I do feel for you truly I do I got diagnosed with CRPS three years ago so I totally get what your going through, feel free to ask anything I will try to answer best I can? Carol
    • Cillasmum
      Cillasmum linda43575

      Posted

      Hi Linda sorry to hear you broke your wrist but on the bright side at least you didn't need surgery.  Please don't worry as your arm will start improving.  When the cast comes off your arm will feel very painful but over the next few weeks you will be surprised at how quickly it will improve and soon you won't need the wrist support.  I really do think that the tight cast in the beginning has contributed to CRPS. After being

      diagnosed myself I too looked it up on the Internet and was heartbroken. However a lot of people do recover in time so please stay optimistic. Like

      you I was very active before this happened always at the gym and used to swim 150 lengths a week. You may also be prescribed Gabapentin over the next few weeks and referred to a pain management clinic if symptoms persist. I was quite worried over meds prescribed but I am bearing with them as I just want to get better. In fact I have noted a slight improvement in my hand and the meds have taken the edge off the pain. So onward and upward! Please let me know if I can help in anyway, if I was near I would be giving you a Big Hug x so keep your chin up and let me know how things are going 

    • sandra291
      sandra291 linda43575

      Posted

      Sorry to hear of your problems. I would suggest visiting your gp and insisting on a referral to the specialist Crps clinics at bath or Liverpool as early specialist intervention from a multi disciplinary team is the best way to achieve a successful recovery. Do not take no as an answer as you want to get as much use back in your hand/arm as possible. The problem we had was that we did not get a diagnosis for such a long while that it was difficult to reverse the problems my son already had
    • Cillasmum
      Cillasmum sandra291

      Posted

      Hi Sandra Thanks for informing about the location of the specialist Crps clinics. I live in Liverpool and currently waiting for referral to pain management clinic with Crps. I have not been made aware of the specialist  clinic but will definitely make enquiries. 
    • elaine_2770
      elaine_2770 carol91733

      Posted

      Hi carol, I was just reading your post about crps is it 3 year you've had it, what do you do or take to relieve the pain, I just got told I have this a few days ago but I've been suffering for a year n half now after getting a full knee replacement so I've been referred to pain clinic, I've never heard of crps until a few days ago, I would love to know more about it of ppl that are going thro it aswel. Thanks x
    • linda43575
      linda43575 Cillasmum

      Posted

      Just thought I would give some good news. I have now been taking amitriptylene for several weeks and most of the pain in my hand has gone. It stil hurts to move, but even that has improved considerably. I have limited movement in my wrist and still haven't tried driving as I have no strength in that hand and can't clench my fingers tight enough. 

      I have seen 2 different physios, ( NHS) the first of which had no knowledge of the condition, and basically told me to rest, relax and not be anxious. And not to try to use my hand. He has moved on, and I am now seeing a lovely lady once a week. She spends time massaging my hand and manipulating my wrist and she said I should use my hand and could get back to exercise.

       So I have been to Boot Camp twice! I can't do a lot of the things I could (obviously press ups are out) but am enjoying being out in the fresh air, with good friends rather than sitting moping and watching Judge Judy!

      i see the orthopedic consultant in 2 weeks, and my referral to the Pain Clinic is in June. Ridiculous amount of time to wait.

      i feel I am gradually getting my life back and there is a lot of hope where there was despair.

    • elaine_2770
      elaine_2770 linda43575

      Posted

      Aww that's great news Linda so happy for you, you must feel on top of the world lol it's crazy the length of time you have to wait to see the pain clinic, I've to wait till October 😥 keep us updated. Take care x
    • carol91733
      carol91733 linda43575

      Posted

      Fantastic news Linda I'm so happy for you truly I am, will be interested to hear how you get on at pain clinic and what the consultant says!! Luv Carol x
    • debbie26552
      debbie26552 linda43575

      Posted

      That's so good to hear, I know how dibilitating it can be physically and emotionally.  Keep your wrist moving, exercise it every day, use the hot wax, and do the hot/cold water contrast as often as you can.  Healing the soft tissue takes longer than the bone, the swelling will eventually go.  Mine is improving gradually.  And no, no push ups for me either, but I can live with that.  My therapist at the hand clinic told me one year from the time of the accident will indicate what the movement will be.  I think if you rest it then it will stiffen up more.  I also go to an osteopath and she really works the soft tissue, amazing results from that. 

       

    • maddy1234
      maddy1234 linda43575

      Posted

      Hi Linda, I broke my right wrist last summer and like you can't make a fist, my hand was badly swollen for so long, it looked like a prosthetic hand. Have you tried a padded steering wheel cover for your car, I can't grip a standard wheel but got this and gloves with sticky palm to help. After 6 months I was able to drive again, which I believe helps , it's given me some of my independence back. It's a bit awkward turning the key, I have to use my left hand to do that.
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