Hi everyone,

I was just wondering whether any of you have any lesions on your RSD limbs? Over the last few weeks, I have developed some scratches that look a bit like I have just cut myself with a knife (I promise I haven't lol), They don't seem to be healing that well and they keep bleeding quite a lot, even if I haven't caught them on anything.

We spoke to my Physical Therapist's about them and they said that they looked somewhat like Lesions, to keep an eye on them and if they don't get any better soon or start getting work then they will give me something to try and help them heal. I am due to go into hospital next week on the 22nd to have my leg manipulated and a splint made under General Anaesthetic but one of the concerns is that with the Lesions, the splint is going to rub and make them worse. My PT's say that I have really thin skin as a result of the RSD.

I was just wondering if any of you have any Lesions. They are pretty ugly looking and are scaring me a bit because I have seen pictures of them on the internet.

Any ideas/suggestions is greatly appreciated.

Thanks!
Alison

I've gotten lesions almost since day one with this crud! LOL Mine have always looked a bit like tiny blood blisters, then one day they're an open sore! Usually they're very small sores but can take up to 2 weeks to heal. It's a pain but nothing that can be done about it. I've had rsd for going on 6 years and they've never gotten any worse or come close to looking like the ones I've seen online. They scared me too. I've known 2 people in all these years who had sores on them as bad or worse than the ones I've seen around. So don't fret too much.

Just keep them clean and keep an eye on them. They're caused by not having proper circulation in our limbs. Hope this helps.

Hugs,

Karen

Hi Karen,

Thank you ever so much for replying! I'm sorry to hear that you also suffer from the lesions though I am glad to hear that they are not as bad as some peoples.

I did speak to my PT's about the Lesions and they said that they looked to be the start of Lesions and that they didn't look very nice. They told me to keep an eye on them but if they get any worse I have to let them know and they will give me some cream or dressings to try and help them heal. I have had the Lesions for about 8 weeks now and they don't seem to be healing - they started off pretty small but now they are quite big. One of my friends suggested to try some special healing honey has they can help lesions heal.

Thanks again for replying and I will keep you updated

Hugs,

Alison

Everything about rsd just sucks but I think the lesions, behind the pain, are the worst! I know other people have been given creams that seemed to help. I can't remember the names of them but I sure hope yours heal up soon!! 8 weeks is quite a long time. Try everything you can at this point to help out. Please do keep me up on how things are going and I'll be thinking good thoughts for speedy healing for you.

Hugs,

Karen

Hi Ali and Karen,
I'm sorry you have the skin lesions. I do too. Sometime, it's a rash. Sunlight is not good for our skin, so always use sunblock, my Dr. says. Some of mine itch real bad. so I use a salve or clear lotion for like poison ivy. Some of them turn into a light colored, grayish, brownish raised mole. I asked my Dr. if I could have them removed, and he said no, not for a rsd person, risk of making the rsd worse. I have full body rsd, so they are everywhere. I'm so sorry Ali, you are young and have beautiful skin I'm sure. How is it going with your new school program.? Thanks for the info on why, Karen, circulation problem makes sense. Take care, Loretta

Don't always assume RSD causes these places either. I am going back in Nov. to see a Dermotolgist for the 3rd time to deal with Precancerous places. He says they are from too much sun. I have never been a sun lover as far as laying in it or going to beaches. I do use sunblock, I use hats also. He said mine were in unusal places but they are still what they are.

I do understand that RSD can cause lesions but not always.

Ali,
I do read on here but don't post much, I hope things start looking up for you what with school and your Grandparents. Not everyone understands the shape we are in, so we just have to try to deal with it as best we can. You have a lot of friends here that know what you are going through.

Ada

Thank you all ever so much for replying, I truly do appreciate it.

I will definitely see a Dermatologist if the Lesions do not heal - I just always automatically seem to assume that every symptom I got is from the RSD (I guess it's natural) however I have spoke to my PT's about the Lesions and they said that they have never seen Lesions in an RSD patient before however they do feel that the Lesions are from the RSD. I was told to keep an eye on them and if they get any worse, start to spread or don't heal etc I have to let them know straight away and they will try and get me some cream or something that may help.

One of the main concerns that my mom, the PT's and myself have is that I am going into hospital this coming Wednesday (the 22nd) for a Splint making and my leg manipulated under general anaesthetic. The thing that concerns us it that with me already having Lesions, the Splint could possibly rub them and make them worse or even more painful. Thankfully the Splint is removable so if I have any problems I can take it off straight away. My PT's explained that my skin breaks really easily (probably because of the RSD) and that we will need to keep an eye on things. I will let you all know how I get on in hospital on Wednesday ... I have to be at the hospital 8.30am English time (3.30am) and I am going into the Operating Room at 9.30am. Thankfully I will just be staying in for the day!

I'm sorry that so many of you also suffer from the Lesions, I know they are no fun

Love,
Alison

Hi Ali, sorry to post so late on this, infact i thought I had posted! But I have Lesions and they are definitely rsd lesions as diagnosed by Dr. S. Mine are dreadful, extremely painful. They appear ususally first thing in the am. The most severe was on my right knee( my orginal injury leg) I am in my fifth year of RSD.
This particular one began as a lesion -so painful, even a tiny movement causing air against it could nearly cause me to black out- that stage lasted about 4 days. It was about 4 inches long and two to three inches wide, them it ulcerated. A huge dark scab that bored deep into my knee, felt like it went in two inches. it was so sore it put me in my wheelchair for a aobut 10 days, I could not bend my knee for allmost 4 months and it took 4 months for the ulcer stage to go away and the scab to disapate. The scar remains very painful and when I flare up one a day, it is a hot spot. Just like a dog! I have to try and keep a sense of humor with this! When I flare up it will turn a deep red or almost black and be extremely hot, which is unuusual as I have cold rsd. but I have severe burning with flares but freezer type burning in my feet andlegs, This burning is similar to what I have in my spine. The other lesions I have had, the wrost were - one behind my left ear, huge, swollen, red hot, took several weeks to go away, I had to pin my hair back as one piece of hair hitting it could send my whole body in to a flare up and antother very large one on my side. which looked like long fingers of blood bllisters. All have left terrible scars. I am terrified of them. I have been told there is nothng I can do to prevent them, just try to wathc stress adn not let my pain get too high. So all my meds were increased once again.
Iam now taking, Opana 80mg a day, with 30mg Oxycodone 4 times a day for breakthrough pan pllus the other usual 9 scripts. I severly limit my activities to keep them from occuring. It is very depressing. As often I feel like ding more- but if I over do and cause a flare up it result in one of these lesions now. I was told this is just part of Stage IV RSD. Sorry for the "bad news" I sincerely hope no one elses go to this stage. If anyone could tell me how to post pictures I will gladly post pictures of my lesions.Good luck Ali, CZ