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
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?
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
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.
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
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.
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
Hi thanks for your reply 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
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
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!
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.
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
Not sure if you got my last message, it's Carol here?? Are you on FACEBOOK perhaps can chat easier on there maybe?
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
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
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
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
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
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?
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