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
Hi Andy...
I've not had the blisters but to me that is something that is not ok just to be dismissed by your Gp.....I would contact your pain team again and ask to see someone it sounds to me that you need a referral to tissue viability or dermatologist .......when you take your pain medication do you take just the garbepentin ? Or do you take paracetamol as well.....it's just in my none crps life .....I would give the information to people that unless there's an underlying cause for them not to ....always take paracetamol as a foundation block of pain relief then build on this with other medications....I hope you get some sleep and furthert treatment soon it's a horrible diagnosis......x
I don't have crps but I asked a question once so follow the discussions now. I just wanted to say I am so so sorry for your pain. I just did a little searching around and a website does list skin changes as symptom. I've pasted below the information I could find.
I would definitely go back to your GP or your pain team or a dermatologist. There must be someone who can help. I have read in the past that treatment with vitamin c early on in the process has helped and alpha lipoid acid is also touted as a nerve regeneration supplement. Ala is supposed to help nerve pain also but most studies have been for diabetic neuropathy. I know they are supplements and probably won't help massively or quickly but it's worth reading about and perhaps A try as I can imagine you are at your wits end. I am honestly so sorry for you and everyone with crps, it sounds like an awful awful disease. I hope u get some relief or at least a Dr who tries to help.
Skin Symptoms of CRPS
Other symptoms of CRPS may be present in the patient’s skin. Patients most notably experience temperature or color changes. These changes are typically caused by issues with proper blood flow in the affected limb.
The skin of the affected area may change colors. It may appear reddish, bluish, or purplish. Paleness or blotchiness may also occur. Additionally, the temperature of the skin in the affected area may change. The affected area may become hotter or colder than non-affected areas, such as the opposite limb. The temperature of the affected CRPS area may continue to fluctuate.
Rashes and Eczema
Symptoms of CRPS include the development of skin conditions such as rashes and eczema. Eczema is a category of dermatitis conditions. Eczema is characterized by redness, swelling, and inflammation of the skin. Some patients experience itching. If the skin blisters, bleeding or oozing may occur. The skin may also become dry, scaly, crusty, or shiny.
Hi, I just had another quick look around on the web and some people say dmso is helpful, I don't know a lot about it other than you have to be careful with it as I think it acts as a transporter so anything you put on your skin after using dmso will be absorbed and it supposedly smells like garlic or makes you smell like garlic but you should look it up and read about it. I doubt you can put it on broken skin but if there is a point the blisters heal then maybe try it. Check with Dr first.
Maybe some people on this forum have tried it and can give you an honest review. There are some reviews on it for other things on web m d.
Hi again,
I also just remembered seeing mirror therapy once on TV. Please see the link below which goes into more details but you can do it at home and make your own mirror box so it's a cheap convenient thing to try. The link gives more details on how to do it.
Jpegs, Charlotte,
Thank you both so much for your replies, it amazes me that people know more and suggest more than the actual people who are supposed to be there to help. I can't do any form of physio at the moment due to the placement of the blisters, most are on the joints so bending fingers is difficult as the blisters crack and bleed.
I have been referred back to my pain management team, nearly 4 weeks ago, but I've not heard anything yet and I have chased it up plenty. My GP centre is like a conveyor belt for patients and to be honest I've seen two different GP's, several times and neither seems to have an understanding of the scale of the pain.
I've never tried paracetamol with my Gabapentin? I'm just wary that I'm taking four different types of medication and adding another just makes me feel anxious.....but to be fair, I'll try anything to make this pain go away.
Thank you both again for your replies.
Hiya Andy, I also have CRPS or craps as i like to call it. About 2 months ago a small blister bubble came up on my finger I thought nothing of it until it got bigger and eventually popped and went to a huge gooey mess since the 5 have appeared on my fingers. Has been dismissed by my gp who in my case is as much use as a chocolate fire guard !!! My specialist pain nurse has said its just another crps mystery as the nerves inside are just hay wire, i have has huge brusies ect also....
I have just had a spinal cord stimulator fitted to help with my pain.
How are your blisters now, and are they just on crps parts of your body ? X
I don't want to worry you, but u drag and ulcers can be very bad with crps. Check out the lady on burning nights web page, she's had the most horrendous ulcers. Get it seen to quickly. Also check royal college of physicians guidelines for crps, this gives different guidance for GPS, physio, pain management, dermatology Tec. It's interesting what they are supposed to follow.
Sorry predictive text again, u drag not what I wanted to say. Aghhh
Check out appendix 9 on www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf.
Hi Lorna, it sounds as if you're going through the same frustrations as me, when it comes to GP's and the pain management doctor. It just feels like there's no real understanding of the condition....in all honesty I've learned more from the tinternet than from the 'specialists'. I started off with the bruises and these weren't just on the affected part. They then developed into the blisters I now have. Luckily they are only confined to the thumb area for now. May I ask, is it your hand(s) that are affected? As I'm wondering what the spinal cord stimulator does for the hand?
Hi Maddy, do you have the link for the lady on burning nights? I can't seem to find it, I'd be very interested in reading this. The frustrating thing is, I had these blisters on the day of my second nerve block and the pain consultant was extremely dismissive of it. My GP's have been exactly the same, so I'm not entirely sure who else I can go to in relation to the blisters. Thank you so much for the suggestion of the royal college of physicians....I'm going to look for that now. Thank you so much for taking the time out to give your advice, it is greatly appreciated.
Andy, one of my messages had a link for royal college of physicians, but it's been blocked for now. As far as the other site is concerned just search burning nights and the lady's blog should come up, she's had dreadful ulcers, pictures quite upsetting though. I understand she's a rare case, but not something you can leave if it is a problem. Appendix 9 when you get on rcp site is quite informative. If you feel it's appropriate go back to go and insist on a referral to a dermatologist. I've been diagnosed since October/November last year, I found such a wide variety of knowledge and help or not as the case my be. I'm not impressed
Sorry, I found it after replying to you. That poor lady, that is such an awful condition to be in I'll await the links to be unblocked, I'm sure it won't take long. Funnily enough, whilst typing my last message to you, one of my blisters cracked and started to bleed, in for a great night tonight! I'm looking at the RCP site now, I'm definitely going to insist on a referral to a dermatologist. I know the Internet can be quite misleading with some things, but I've found that those suffering with CRPS, are extremely knowledgable and it's helped me understand more, I just couldn't seem to find anything linking it to blisters.
My crps started in left knee. Now has spread down both legs into my feet and right hand up to right shoulder. My scs is for my arm and leg had it in 13 weeks now. 60% less pain but as they say its not a cure only preventative measure... My pain consultant now e mails my gp telling her to change my meds ect.. As gp is still a non believer.....
The scs is like an internal tens machine with pulses to my hand and knee its weird but getting used to the sensations...
my blisters where on crps affected fingers and 2 on opposite hand also which i have started to loose grip ect with x
It sounds like you have a fantastic pain consultant and clearly one that knows what they're doing, unfortunately like most GP's, they do not understand it or try to pass it off as something else. I went to my GP a week ago, after a really bad bleed overnight, and left the dried blood all over my hand and where it had dried down my arm....her answer "keep taking the prescribed medication" and take 7 weeks off (yes, 7 weeks is a very random number). Your scs sounds like a great bit of treatment and I really hope it's improving your quality of life. Like you say, Its not a cure, but it's helping. It feels like a weight has been lifted from my shoulders by just talking about it all. Thank you x
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
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!
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.
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