Loretta, I was referring to skin lesion, described as occurring in stage IV. Mine range in size form 3-4 Inches wide and long. On the day they appear- always open- the pain is excruciating. 9-10 i can barely stand it. If it is on my leg, like the last one , which ulcerated, I can be in my wheel chair for 2 weeks. The one on my knee took almost 6 weeks to dissipate. But thee scar, deep black or red during a flare is still there and it is still active under the skin.I sent pictures of all of my lesions to Dr. S he wrote back that they are caused by "cytokines being released from the nerve cell." Thus damaging the tissue, Neurological burns. He said he has consulted with all the big dermatologists and they have nothing to offer. You just have to Wait it out and get through them. My pain management doctor told me in my case he knew thy were coming. I was rather angry he didn't tell me. But they have there reasons- stress apparently aggravates them. the only thing we can do is keep stress low(lol)As far as treatment I was told to keep them clean and dry. I was given scripts for Elma cream, which I can apply very carefully by the third or fourth day and then wrap in Saran wrap for a few hours and the area goes numb.There are not enough pain meds for this type of pain, at least with mine.If I knew how to post pictures I would send them to you and you could see if they look like yours. Or if you send me your email I know how to attach pictures to the email and will send them to you. I am so so sorry to hear you are having these. They really set me back, I find them horrifying. I have strictly limited my activity even more as I am terrified of getting more, I have now had 6 very scary lesion. The one on my knee ulcerated and lasted 6 weeks and is still active- when ever I flare it flares turning black, blue then red hot on fire. Hope this helps, Please don't hesitate to write me or send you email address and I will send you the pictures. If you know how to post maybe you could post them for me.:: Thank you again so very much, Loretta(we are both full body)- Not that it really matter, pain 24/7 in one limb has all the same complications don't you think?God Bless.CZ

Hi CZ and Loretta,

I'm not sure if you can answer this or not. But I have a question for both of you. First, I am not full body RSD. I have it in my left arm and now in my right. But, my question is - if you can remember back to before you were full body - if/when you got a scratch or cut from something (which is very painful) did you see a problem with it healing? I have scars that are red. Even if it's a scratch, it doesn't heal right. I'm assuming that this is the RSD. Any scratch that I get doesn't go away - no matter where it is.

I have a scratch on the side of my nose that I got from my dog and it's still there - red - months after it healed.

Did you have this before the lesions started? Thank God I haven't received any lesions yet.

I hope this e-mail finds you having a good day... Atleast one good day...

Hi ,
I did go to the doc. She could not tell whether or not my face was swollen. I know it is.
I have been feeling so terrible. My whole body hurt so bad. My back and spine are hurting me crazy. The pain was burning and radiate to my upper arms. I also have pain in front of my low thigh and calf. I do have intermittent back pain before but not to this degree.
My question is how do i know whether or not my back pain is RSD related? About 5 to 6 weeks ago, i did have a very painful nerve block in my buttocks, therefore, i am wondering whether or not my RSD in my hands and feet have spread to my spine and back and legs and face.
Take care and wishing you all have less pain and symptoms,
Numb

Hi numb,

My name is Loretta and I have RSD,12 years, full body or generalized as it is sometimes called. I'm sorry you have all these additional symptoms. Have you made a followup appointment with your Dr. since your block? I've not had a block before. it was 4 years

I've read on this forum that blocks help some and others it can cause a spread of rsd. I would definetly get with my Dr. about your symptoms. I certainly hope it isn't spread.

Have you ever tried massage therapy. I can calm your system down. Try everything you can to stay calm and relaxed. Music? Buble Baths, Candles, lotions, comedy movies. Meditation, photo albums of fun vacations and memories.

You could be having a flare, has the weather changed, I had the stomach flu last week, and hurt everywhere. Please let us know what the Dr. says. And don't let them try to tell you RSD doesn't spread. IT DOES. Take care and please write us. Loretta

Hi dealing with tos,

Greetings, I'm sorry you are dealing with RSD too. That's not good with it moving into your right arm. That's what happened to me. Started in left arm shoulder day following surgery. then over a year later moved to right hand shoulder. Both shoulders were frozen and had extensive pt and massage therapy.

Yes, I have a cat with her claws. Since RSD affects our circulation system, we don't have the advantage of adequate or normal blood supply which carries oxygen to the injury site to heal properly. That's why I want to try the HBOT treatment center. It's all about getting 100% oxygen to our tissues to promote healing. It's used with a lot of different wounds and disorders. I haven't been researching long, but there are at least a couple on this forum that use it regularly and get relief from it. I hope this helps some, My Dr. I saw yesterday is doing more research on it as regards to its effectiveness for RSD. Take Care, Loretta

Hi CZ! hugs,

Thank you for writing back. I'm so sorry you have those awful painful lesions. Mine are really more like a rash, lots of small red dots in a pretty large are, actually several areas. My chest was an area about your size of lesion. Mine itch and skin gets like painfully raw. My chest is better, but now they are going up my spine.

Yesterday I saw my Dr. He manages my rsd and pain. I see him once a month. He is a neurologist, psychiatrist, and pharmacologist. From New York City, practiced there for years and now has a very limited practice and teaches. Now he is building two clinics. I asked him his opinion on HBOT. I know Diana A has a home unit. He explained how this treatment supplies the blood with 100% oxygen in pressurized chamber. Our RSD, in our case our body, especially hands and feet turn purple, bluish, mottled color because of lack of oxygen, from poor circulation. Didn't you try the HBOT or are you on that form of treatment. My Dr. is doing research in respect to the help for RSD patients. I can't wait to talk to him next appointment. I'm definetly going to try this. There is a RSD HBOT treatment center in Florida, I think it's Palm Beach, will need to look that up for sure. I just did a google search using HBOT and saw a website mentioning RSD as one of the disorders that they use it for.

The swelling I know goes with high blood pressure, RSD is an automic condition, which means involuntary organs are effected by RSD, like heart, lungs, kindneys, High blood pressure patients have to watch their salt intack. I don't use it at all, just what is naturally in foods and always choose low sodium or no sodium if have a choice. To me it makes sense if our circulation isn't good, we are going to retain more water than we should. I try to each fresh fruits and veggies and low sodium foods.

CZ, didn't you try the HBOT? To answer your question, We all suffer, having full body, is tough, but when I read about others like yourself having leisons, it sounds so bad. My Dr.
is really a stickler about working on how we react to stress. I use meditation, scented candles, calling old friends, We moved 10 years ago from Oregon. keeping in touch with friends here, and all of you on the forum. I love to read. Distraction is the only thing that helps, the pain meds aren't strong enough. We are having a weather front come in, and I feel like the flu. It's just so hard to get out of the house and even do an errand isn't it?
I really force myself to even get out of bed. My e-mail is out right now. Should be fixed next week. You can always PM me. Thanks for your interest, Take care, Loretta

Loretta- I had to write you back, my husband and I were just talking about moving to Oregon today, that s such a coincidence. Yes I have far too much stress. Talk with you soon. CZ

Hey,
I went to see my primary doc twice for my puffy face, but doc can't find anything wrong. Now my face not only swelling but also feel some burning under and around my eye and feel hot sometimes. Is there any natural remedy for the puffy face?
I have felt so much better now for my back. However, my calf, feet and toes are feeling tingling, numb and burn. Not sure whether or not it is RSD related.