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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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  • carol91733
    carol91733 sandra291

    Posted

    Aw... Finally great to talk to someone in the UK that has and gets what im talking about? Hi Sandra my name is Carol I have this illness in my left ankle only how did your son develop it? Mine was from a fall and is getting worse? What treatments has your son received I only get Physio?
    • sandra291
      sandra291 carol91733

      Posted

      My son just went to bed and woke up with the condition in his right arm, this has now spread to include his left foot. He has had physio, psychological help, medications and spinal cord stimulator fitted but nothing has worked so he now just takes numerous tablets to try and cope with the pain but nothing has really worked. I find it difficult to accept that this has happened for no reason.
    • gelliblue
      gelliblue carol91733

      Posted

      Hello, I'm from South Wales and I'm having tests done on Thursday to see if what I'm suffering from is crps. How do you cope with it?
    • carol91733
      carol91733 gelliblue

      Posted

      Hi my name is Carol I live in Bristol have been suffering from CRPS for three and a bit years! Mine started from an injury after being dropped in Frenchay Hospital damaged my ankle, does your have colour changes, swelling, hyper sensitive, then there's the pain levels, burning pain, etc it's something I believe you have to end up living with the condition is horrid! Tell me more about yours I'll try to help best I can? Luv Carr
    • gelliblue
      gelliblue carol91733

      Posted

      Hello Carol, I'm Wayne. I had an accident at work just over three years ago and the injury to my left ankle required a fusion. Since then my big toe feels like it's going to explode, I have numbness, the foot feels warm mainly and in constant pain after the slightest of walks. My toe nails seem to have stopped growing which I can't understand. If it's something I have to live with then so be it but it's really frustrating.
    • carol91733
      carol91733 gelliblue

      Posted

      Hi Wayne all what you tell me is sounding very much like CRPS especially the non grown of the toe nails, that's part of the illness, also for me no hair growth either, can you walk on your ankle do you wear a brace or anything for support, sadly if you are diagnosed with it, depending how extreme your symptoms their is a luckily hood its perminant luv Carr
    • debbie26552
      debbie26552 gelliblue

      Posted

      Good morning, I crushed my wrist last Aug.  when the cast came off I knew something was wrong and so did my dr.  The pain was horrible, very difficult to describe the sensations to people who hadn't experienced it.  Staying positive is difficult but essential.  Hot/cold contrast baths several times a day if possible.  I use a wax machine to heat up my wrist prior to some of the exercises.  I was in therapy everyday.  Hospital, at the osteopath, and massage.  I had been on Celebrax and Gabapentin.  These all seemed to help and things are much better.  The pain clinic just suggested to be aware not to reinjure the hand (bone and soft tissue) because it could return.  Good luck, and questions just ask

       

    • gelliblue
      gelliblue carol91733

      Posted

      I can walk on the ankle but it is continuously painful so I may have to look at some form of support. The medication don't seem to help that much but maybe they are keeping it steady.
    • gelliblue
      gelliblue debbie26552

      Posted

      Thanks for the reply and I'll keep in mind what you have said. I'm hoping not to reinjure it as that would be way over the top. It is a pain thats hard to describe.
    • eva96035
      eva96035 debbie26552

      Posted

      Debbie, my son we think has CRPS, I have a chiropractor that I've used for years and he has a daughter that has CRPS and he's actually the one that thinks that is what my son has it's hard to even find a doctor where I live that has even heard of CRPS/RSD, my son's problems started in his right shoulder and arm he had a football injury that dislocated his collarbone at the sternum and we went through a couple of years dealing with that orthopedic doctors and one doctor that thought he would need surgery for thoracic outlet syndrome and all they did was physical therapy and things just got worse and after all this I took him to my chiropractor and adjustments allowed relief and realignment to unpinch the nerves, but then about 6-8 months later his left leg started hurting and then he was finding it difficult to walk on it so I took him back to the chiropractor thinking it was another pinched nerve and that's when pain and sensitivity came into play and when he told the doctor about the symptoms that's when the doctor shared his story about his daughter who has RSD/CRPS and has been trying to help find someone in our area that is familiar to this syndrome because my son has the exact same symptoms as his daughter who has been dealing with this for 6 years so any suggestions on the type of doctor to seek out would be greatly appreciated.

  • jane68688
    jane68688 sandra291

    Posted

    Hi Sandra

    i also live in UK I have only had this condition for 4 months and it drives me crazy i am so frustrated and the pain can be just awful the swelling is a nightmare i cannot wear a shoe on my left foot only a cast boot or slipper, it is making my job as an estate agent very difficult, i understand exactly how he feels 

    • sandra291
      sandra291 jane68688

      Posted

      Sorry to hear your story but try to stay positive. Take all the help and physio that you can. It took us ages to get a diagnosis by which time any hope of recovery was minimal. Try to keep your life as normal as positive and go to work as my son is unable to work due to the severity of his condition which is difficult as he is only 27
  • Cillasmum
    Cillasmum sandra291

    Posted

    Hi good to see we have a few people in the UK.  My name is Tina and sorry to hear about your sons condition and I hope he is not suffering too much. I was diagnosed with Crps only 2 weeks ago. I had surgery I.e. Plate and screws in place after breaking my wrist in December after being informed by my consultant that my wrist was like a shattered paving stone. Straight after surgery my arm was placed in a cast and after a 2 night stay in hospital I was discharged. However as i was getting ready to go home I told the nurse that I felt that the cast was too tight however I was informed that it was fine. The nurse never even examined my arm she just dismissed me and I felt that I was making a fuss. Over the following weeks my arm felt like it was going to burst, my hand was burning and I was experiencing sharp stabbing pains in my arm. At times the pain was unbearable and on my next appointment with the consultant I asked why was I experiencing so much pain? I was informed that I had had a bad break and it was to be expected. After time stitches and cast were removed but to this day my hand and wrist is still swollen, stiff and painful. The skin has a shiny appearance and is extremely  sensitive. When diagnosed with Crps I was prescribed tramadol, amitripalene and gabapentin and now waiting on referral for pain relief clinic. In the meantime I am having Physio which has helped a little.  The meds have taken the edge off the pain but must admit I am frustrated at the lack of progress. Has your son been informed with the cause of his crps? I must admit I had never even heard of this condition until 2 weeks ago so I am still trying to get my head around it. Hopefully over the next few weeks I will improve my awareness and would be more than happy to keep in touch with you. 
    • sandra291
      sandra291 Cillasmum

      Posted

      Hi hope things get better for you. There has been no cause for my sons Crps been found which is why it is so unusual as he just went to bed, he had no accident or illness beforehand. He was in fact going to uni to do a degree when he became ill. We have been to pain clinics in Leeds, Nottingham and tried numerous medications. We have also been to Crps specialist centres in bath and Liverpool so it might be worth asking for an early referral to one of those to try and aid recovery, the sooner you are seen at a specialist centre the better the prognosis will be. Hope this helps 
    • Cillasmum
      Cillasmum sandra291

      Posted

      Hi thanks for your reply smile I wonder if your son experienced any symptoms that evening, I know it's a really long time ago but just wondered if he had pins and needles or if he had an infection of any sort, maybe excessive sweating in bed on that particular night? It may be beneficial for him to take vitamin C although there have been differing reports on its effectiveness and the best time to take it is allegedly in the early onset of crps.  I do hope that your son gets better in time X 

       

    • carol91733
      carol91733 sandra291

      Posted

      Hi Sandra please can I ask how well did Bath Clinic help your son and how lg after his illness did you get referred to there? I've had my illness three years and might get sent there do you think it will help or is it to late for me?

      I truly hope your son makes a full recovery how old is he, it's awful for you as his Mum too Im sure?

      I wish you both well!

    • sandra291
      sandra291 carol91733

      Posted

      My son was referred to bath after about 3 years but he didn't go as it was such a long way from where we live. However l have heard that it is a really good programme so if you get the chance l would take it. My son is 27 so l couldn't really tell him he had to attend 
    • carol91733
      carol91733 sandra291

      Posted

      How is your son now though Sandra, what treatments has he had? I'm on so much medication including Targinact, gabapentin, amityripelene, quinne, Oxycodine, I have drop foot along with the CRPS which as I say I went into hospital for a back operation got dropped whilst in there then got told I had damage my ankle ligaments with soft tissue injury, then they diagnosed Id developed the CRPS I had never heard of it, I have sort of got used to after such along time of pain and suffering this is as good as it gets, it scares me, don't wish to get my hopes up on Bath as I have been let down so much along the way! Our lives have been turned upside down. I just want my life back? I truly hope for some cure for us all? Luv Carol x
    • sandra291
      sandra291 carol91733

      Posted

      My son had nerve blocks and spinal cord stimulator trial both of which failed. He is currently taking loads of medication to help him through the day. He recently took part in a drugs trial for Crps but that didn't have any effect either. He has currently been told that there is no further treatment available so he takes each day as it comes
    • carol91733
      carol91733 sandra291

      Posted

      OMG!! Really wat a daunting future for someone so young? God I'm so sorry to hear that bless him. Your an amazing person to keep strong the way you do and so positive helping people like me in the similar position! Thank you Sandra for all your guidance! Luv Carol
    • debbie26552
      debbie26552 Cillasmum

      Posted

      Hi, I have pretty much gone through the same as you.  Crushed my right wrist last August.  Had a cast, went to my GP about the swelling and discoloration he said it was normal.  Nights were more painful.  They removed the cast but no one noticed there was a problem, told the same thing, extremely bad fracture and my age it would take a long time to heal.  Couple of weeks later my surgeon noticed and acknowledged that is was CRPS.  I was going to the hand clinic at the hospital every second day, and my osteopath every other day....my life was appointments.  I was taking a few medications didn't like them.  I believe the therapy got me through.  I still have some swelling and mild pain, I am so much better than I thought I would be at this time.  I continue with my own exercises at home.  Keep the wrist warm, you don't want to redamage the tissue.  I still wear a tight glove sometimes, and do the hot and cold  contrast I find that helps.

       

    • Cillasmum
      Cillasmum debbie26552

      Posted

      Hi Debbie tanks for your message and sorry to hear about your wrist but glad that it's improving. I feel like I am following in your footsteps as now my time is taken up with hospital and Physio appointments. Currently taking lots of meds which is just taking the edge off the pain. Still waiting on referral to pain mgt clinic, it's been a few weeks now so hopefully I will be seen shortly. You mention that therapy has helped can you please confirm what type of therapy? So glad to hear that you are improving wink I am optimistic that I will also improve over time. It just takes time, patience and exercise. My friend has lent me her heat pad so will be using that to keep the wrist warm, is this what you use? Do you drive? If so how long after the accident were you were able to drive? I got in my car this week but couldn't even get the handbrake off and was unable to change gear 😥
    • debbie26552
      debbie26552 Cillasmum

      Posted

      Hi, yes time and patience.  I have had many bad days you just have to remain positive but allow yourself to be frustrated and sad as well because it is part of the healing process.  I was able to drive even though it is my prominant hand (right).  I live in Canada so keeping the wrist warm is difficult through the winter.  The Dr. at the pain clinic told me to keep it warm because it is the soft tissue that can reinjure and start everything back up.  I use an Isotoner glove a lot (spanx for the hand), I also bought a parafin wax machine for at home and I do that everyday.  I find that even with just a chill in the air I will wear a fingerless glove to keep it warm..I was lucky with my car keyless entry, push button start.  So no problems there. At the hand clinic I was told that I have to make as much progress within the first year, that will be the guide as to the limits of recovery.  I am very optimitistic.  Keep me posted.
    • gelliblue
      gelliblue Cillasmum

      Posted

      That is a mirror image of how mine began and how it's making me feel although my suffering is in the left ankle.
    • tania98828
      tania98828 sandra291

      Posted

      Hi Sandra,

      I read a story over her in Australia not long ago about a little girl who fell over and skun her knee, simple normal thing for a child to do but she developed such savere pain in her knee and it swelled, changed color etc and luckily her mother was an emergency nurse and after weeks in hospital, diagnosed her daughter with CRPS, so such minor things cause this discusting condition which takes over your life.

      Ive been suffering the condition for nearly 2 years now after having a ruptured disc, which affected my left foot and then ended in spinal surgary. Surgery went well but months later CRPS was diagnosed in left foot, then spread to right foot, right hand and finally left hand. Nasty thing.  Hope your son can get some relief as he is far too young to not be living a wonderful life.

       

    • eva96035
      eva96035 Cillasmum

      Posted

      Hi, my name is Eva, my son is 15 yrs old and we think he has CRPS/RSD, what's the best kind of doctor to start with for the best results with this syndrome? I have had him through the Emergency room at 2 different hospital's and they always start feeling and probing him and as you know sensitivity in the areas of pain are awful , yet since they are unfamiliar with this kind of thing they seem to just keep probing and as a mom I feel helpless as there is nothing I can do to help his pain. Any information would be greatly appreciated.
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