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CRPS and blisters

Posted , 9 users are following.

andy47986
andy47986

Hello all, I'm clearly one of many that have been diagnosed with the debilitating pain that CRPS brings. I was only diagnosed in June 2015 but experienced the hurrendous burning pain since the beginning of February 2015. Without boring you with the full description of how it all came about but it started when my hand was placed into a cast, following an injury at work. I was referred to the pain management clinic in June who when diagnosed me. I was put onto Gabapentin and Amitriptyline, which I seem to think is a standard start. The pain for me has been immense and the best way to describe it is, if someone set fire to your hand, let the skin burn away, then rub salt into the wound and then rub sand paper over it after, that's the kind of feeling I have. As with many people, sleep deprivation has become the bane of my life (but that's a different story) However, around July this year a small blister appeared around the area in which I had surgery, this was prior to my second stellate ganglion block. I pointed this out to my pain management doctor on the day of the second block and she was quite dismissive of it being linked to CRPS. My next appointment with the pain management team is in the next "3-4 months". Since having two of these blocks, none of which lasted more than 48 hours, I've developed more painfull, bleeding blisters on my hand. I've been to my GP who doesn't seem to have a clue about CRPS, who gave me tramadol and zopiclone to help with pain and sleep issues. He didn't seem to be bothered about the blistering. So as not to waffle on too much, I was wondering if anyone else has experienced painful bleeding blisters as part of their CRPS experience? After the 1-2 hours sleep I get at night, I always wake up with blood pouring from these blisters, the slightest touch and it pours with blood and the pain is unbearable. I'd love to hear from anyone who has advice or who has this problem too? So sorry about the long post but I'm in absolute desperation for answers/reassurance right now sad

0 likes, 31 replies

31 Replies

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  • david12876
    david12876 andy47986

    Posted

    hi andy,i to crps in my right hand after smashing my elbows at work,i have had 4 nerve blocks in my neck ,a biers block in my arm and 2 spinal cord implants all to no avail .my GP is useless ,i'm now back to the pain clinic who are saying its all mind over matter and i must train my brain to think i don't have this terrible burning and stinging in my fingers and hand 24/7,i also have tiny white blisters under the skin in the affected areas of my fingers but its more like a rash which all the doctors seem to dismiss,i have now seen 21 different doctors and specialists over the last 3 years ,and i have had no relief since day 1 . i have asked for my hand or my fingers to be amputated ,but they say no because they think i am exagerating the pain. i'm at my wits end,i have depression and have'nt been able to work for 3 years,i don't know who to turn to for help as they all dismiss my condition.if i find any solution i will post again good luck to all with this horrible condition Dave

    PS you don't say if you are in the uk or not,as the NHS in my area are useless

    • andy47986
      andy47986 david12876

      Posted

      David, sounds like you're having the same issues as me. My pain management team are about as useful as a chocolate fire guard. The blisters that I had when writing this post, have now spread into my right forearm. The CRPS has also spread into my left hand and left forearm, there are blisters on these too. I've been to see a dermatologist who plainly said he knew that blisters could occur but he had never seen a case of it. I was clinically photographed so the entire dermatology department could discuss my problems.....the end result, a spray on dressing, which was useless. I asked my GP to put a referral through to the CRPS specialist centre in Bath, this was sent in August last year and I have my first appointment next week. I'm pinning everything on this! I understand that it may never go away, but better management would most certainly help. I'd advise you to ask your doctor to refer you to the centre in Bath. Good luck!
    • charlotte1824
      charlotte1824 david12876

      Posted

      I dont have CRPS but just want to say im so sorry for both of you.

      Have you ever been offered lidocaine patches? Verstatis they are called. I read about them in an american book and fought my pain clinic/GP to get them. They didnt work for me as my pain is deep rather than skin and under skin BUT i gave one to my mother in law to try for a nerve pain in her back and they worked very well and quite quickly, I have also read reveiews where people have used them for deeper pain and they have worked for them. They also seem to have minimal side effects in comparison to other drugs.

      There is also mirror therapy which you can do yourself with a box and a mirror. It might not work but surely its worth a try.

      I think its disgusting your pain clinic think your exagerating the pain, seriously who want thier limbs amputated for fun? I did read a story of a man who chopped his own arm off because the NHS would not amputate and he was suffering CRPS but it DID NOT make the pain go away as the pain was in the brain rather than the arm so I wouldnt get anything taken off. Dont forget amputees get phantom limb pain as the brain is the problem.

      Have you both tried, Gabapentin, Duluxotene, Pregablin, Amytriptlyn, Nortryptlyn, carbamazepine, etc.

      There is a whole host of drugs to try like the ones above so please dont give up hope. Sometimes people need a mix of the above to get more pain rlief.

      I truly am sorry for you. 

       

    • lorna35019
      lorna35019 charlotte1824

      Posted

      Hi charlotte, i am dotted in lidocane patches, pain management gave me them, but gp refused but luckily he over rided my gp, i can now wear trousers, I cut mine up for dif sizes and areas od body. How u feeling Andy ? As this weather is killing my body, also my crps has spread to opposite area of scs, so right butt, hip and an area of my back. But last night was a first omg my right foot literally felt like the skin was melting off my foof way past a 10 pain scale. Xx
    • charlotte1824
      charlotte1824 lorna35019

      Posted

      Hi Lorna, yes for some reason it seems to be a real struggle to get the lidocaine patches, i think they are expensive so they dont want to prescribe them which is a shame as if they work compared to meds the side effects list is a tenth of the oral drugs.

      How do they work for you, any help to you?

    • lorna35019
      lorna35019 charlotte1824

      Posted

      Hi Charlotte, yes its the expense.. On my knee means i can wear trousers without pain for a few hours. Use on my hand to help with the swelling also. Where my scs battery is, i place 1 over it so the area doesnt rub and irrate against clothing ect....  Cutting them to size really does help them go further. I am on various meds as have had crps sine 2013, understand alot compared to my gp. Xx
    • charlotte1824
      charlotte1824 lorna35019

      Posted

      I'm pleased they help you a bit, any relief is a godsend I'm sure. I really am sorry for you. Crps sounds so awful. X
    • lorna35019
      lorna35019 charlotte1824

      Posted

      Its awful invisible disease, but you just have to take 1 hour at a time. And i have a great pain management team which helps, Bath MIN hospital for rheumatic diseases is an amazing place to help with CRPS. 
  • david12876
    david12876 andy47986

    Posted

    hi again guys,yes i have been prescribed lidocaine 5% patches but i  couldn't get the pain specialist to understand that anything touching my hand is unbearable ,and if i touch anything with my hand or fingers its the same,they just can't understand ( or don't want to !!) yes i've tried all the meds gabapentin etc but nothing worked, the crps specialist at St James hospital in Leeds who did my spinal cord implants said NO meds for cprs will work as its the kind of condition that must be masked via the central nervous system ,ie the spinal cord,he gauranteed me 80% relief ! but the first implant did'nt work then the second high frequency implant did'nt work so he discharged me !! i was then sent to the specialist Neurological Walton Clinic in Liverpool that said they could'nt help me. i am now back under my local pain clinic in Burnley who have told me its all phsycological and to stroke my hand and fingers with pieces of different textured cloth to convince my brain that it does'nt hurt. they want me to buy into this therapy but even though this crps is driving me mad ,i'm not quite so mad yet !!! THIS IS WHAT WE ARE UP AGAINST !!! has anyone tried witch craft ???lol Just for information though CPRS was discussed in parliament last month and is now accepted as a recognised condition . don't know if it will help or if they will get more funding for reserch ,anyway keep up the struggle and good luck to you all you fellow sufferers x  
    • charlotte1824
      charlotte1824 david12876

      Posted

      Hi David, my reply which is waiting to be moderated is a link to a study which the results will be mid 2016.

      Have you tried mirror therapy???

      Here is what the trial info is:

      mplex Regional Pain Syndrome (CRPS) is an often debilitating condition, resulting in severe pain and other highly unpleasant symptoms, generally following limb trauma. In around 85% of those who suffer from it, some level of improvement is experienced within 12 to 24 months. However, 15% of people who develop CRPS do not obtain any relief and are left with the intrusive symptoms indefinitely.

      The cause of CRPS remains largely unknown and as a consequence there has not been a consistent method of treating the condition, much to the despair of sufferers. The only thing that can be said for certain is that established CRPS is difficult to treat. For many sufferers, medication has little if any effect, and even more invasive treatments such as Spinal Cord Stimulation (SCS) can produce disappointing results.

      Recently, however, following clinical trials under the lead of Dr Andreas Goebel, Senior Lecturer in Pain Medicine at Liverpool University, it seems that low-dose immunoglobulin treatment may significantly reduce pain from longstanding CRPS.

      Patients suffering with moderate to severe CRPS for between one and five years were randomly selected to be injected with either small amounts of immunoglobulin, a protein produced by antibodies, or a placebo.

      Early results are encouraging, with patients given the immunoglobulin reporting reduced pain at the affected site. This would suggest that CRPS is an inflammatory or autoimmune condition, caused by a biological stimulus. Whilst it is not yet understood exactly why or how CRPS is being caused, it seems that patients with CRPS appear to display an increased level of antibodies directed against their own nerves (autoantibodies). Accordingly, CRPS could be due to a reaction of the immune system against the body. Whether or not this is the cause of CRPS or simply one element to it is yet to be seen.

      A larger scale clinical trial (known as the LIPS Study) is underway to investigate whether low-dose intravenous immunoglobulin is effective in reducing pain in sufferers of CRPS over a 2 ½ year period. The results are likely to be published in mid-2016. These results may radically alter the way in which CRPS is considered as a condition by the medical world at large, and also the way in which the condition is treated.

    • lorna35019
      lorna35019 david12876

      Posted

      Hi David, i have also tried touch testing with cotton wool and fabrics, capsicane cream, gabapentin. Mirror therapy was the worse I burst into tears as saw a normal leg... When phycologist got me to close my eyes and described parts of my body, was weird as my affected crps parts I couldnt see or describe them except a stump or nothing there... 

      My SCS cervical and back, is only 25% coverage at moment as dumb gp wants it taken out I said NO as 25% is better than nothing when I first had it done in June 15 was a range of 60-80% so hoping when warmer weather comes along scs will work better. Only worry I have now is a my further spread which isn't covered by scs...

      its not in our minds as the pain is god damm real and hurts like hell, yes no injury, but thats nerve pain for you.... 

      Painfree hugs to all xxx

    • david12876
      david12876 charlotte1824

      Posted

      hi charlotte, i saw Dr Andreas Goebel at Walton Clinic in Liverpool and he said he could'nt help me as my symptoms were not servere enough , he was a very nice guy but left me feeling very frustrated as my pain feels very severe to me and i have it 24/7,i accept there are people alot worse off than me and i really feel sorry for them,but it does'nt help me and i am running out of people to turn to for help i feel that i am not getting any support from my GP or the medical profession as a whole . You sound very knowlegable about cprs and the medical studies you mention ,are you in the medical profession yourself  or is this just what you have learnt from the internet ?? regards David
    • charlotte1824
      charlotte1824 david12876

      Posted

      Hi David, I'm so sorry your Drs aren't helping. I am not in the medical profession, I have my own pain conditions and I have done alot reading to try and find out what it was etc as again I have only been in contact with useless Drs. I read a bit on crps and thought it sounded horrendous. Have you tried any supplements, I know I read vitamin c is supposed to beneficial to crps. The other thing is LDN (low dose naltrexone) is being used to treat pain conditions with some success including crps. Not cure but reduce pain levels. I'm not sure how well this works but it might be worth having a read about it. You can contact the LDN research place directly and they can give you info to take to your GP but as you know the gps can refuse to help when it doesn't suit them. The LDN is a well known medication for its original purpose of opiod dependence and was somewhat more recently discovered to help many other conditions that involve pain, I think they are still researching at the moment as they aren't entirely sure why it helps but some ms patients have left very positive reviews online about it. the list of what it treats is quite long so I was always a bit suspicious but if it works for some people then great and it's a very low dose so hopefully side effects would be minimal.
    • david12876
      david12876 lorna35019

      Posted

      hi lorna sorry for the late reply,your reply was very humbleing as your condition sounds to be worse than mine and i feel such a wimp as my pain is only in my hand and arm ,it makes me realise that there are people much worse off than me.just hope you find some relief soon .stay strong and don't let cprs beat you !! god bless you David x
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