Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-25-2007, 08:48 AM #11
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Originally Posted by frogga View Post
Heya

I have those - both on my bum (from pressure) and over my arms and legs - I get ulcers from the RSD and weird lumpy sores - especially at the end of my toes? (Bizzare).

I use magnesium sulphate to draw the infection out and then leave it to the air - I also have the nurses come in to help with them. Have you considered HBOT? I have had that for nasty ones.

Hope it imrpoves!!

Rosie xxxxx
Thanks Rosie....I know you have full body rsd, and that you are in a chair. The ones on your bum (which I do also have them there), do you think the pressure is from sitting all the time, and does your rsd extend to your bum? My lesions are on my legs, and my rsd is NOT on my legs. I'm wondering if pershaps the lesious are a sign that the rsd is getting ready to move there.

I've heard of HBOT, a lot, but to be frank, if something is posted here that doesn't relate to me at the moment, I don't really read it right away. Can you explain it to me a little? Is that something that is common and paid for by insurance?
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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Old 01-25-2007, 08:52 AM #12
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Originally Posted by GalenaFaolan View Post
I get those sores too. Most of the time they're on my legs. I've had quite a few and they always take a couple of weeks to heal and leave a scar. My skin has gotten so bad a small cut even takes a long time to heal and leaves a scar. My sores come from small red spots that look like blood blisters. It started not long after the RSD started. It sucks but just keep them clean and if they get big or look infected go to the doc.

Hugs,
Karen
Karen, are the sores on your rsd affected parts of your body, or the non-rsd parts? Yes, some of them start as blood blisters. I do know that some of them itch, and really without thinking about it, I scratch, and THERE THEY GO! Off and running. And some of them get so bad that they actually "crater" - get really deep. I haven't been putting anything on it, mainly because (and this will sound silly!) recently one of my puppies had an ear infection which made him scratch so badly that he had a hot spot near his ear. I put some neosporin on the spot and the vet said it was a no-no, cuz the air couldn't get to it to dry it out. That thought went thru my head when I started to get these sores. That if I covered them, they wouldn't heal. Welll......they still aren't healing! I shower every day, and they remain clean, but there are so many, I really can't put bandaids over every single one, and the nuskin I believe Curious spoke about....it would probably take a whole bottle each time I did cover them once! LOL!

Have you talked to your doc about them? If so, what has he/she said? Do they leave scars afterwards? Raised skin or just a discolored spot?
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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Old 01-25-2007, 10:15 AM #13
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Hey Lisa

Firstly - I think you should be checked for folliculitis - as it sounds like you may have a type of this - the drs can then rx a steroid cream - it does work. Folliculitis causes itches, almost dark purple blood blister spots, which then pop and leave a crater/ scar type thing.

My bum is mostly pressure - cos I can't change my position independently - I also have the "spots" there as well but my bum is more pressure stuff.

I personally would recommend mag sulph - it is cheap, simple and does make a difference - or alternatively a barrier cream. Leaving sores to the air is all very well - but a) risk of blood poisioning b) unless your skin is totally open to the air (eg wearing skirts or something) then you are likely to get your clothes stuck on the sores - which even without RSD hurts like hell.... ).

HBOT - hyperbaric oxygen therapy - has worked wonders on cleaningup my ulcers (I had them all over my legs and feet). i don't know if it is avaoible on insurance - it is high pressure oxygen - so oxygen is forced in to the nerve cells which gives extgremeities oxygen etc.

Hope this helps!!

Rxxxxx
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Old 01-25-2007, 11:09 AM #14
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lisa, you might want to try regular ole skin lightening creams, like Porcelana. they are in the beauty products isle. the are mainly for lightening age spots, freckles and the brown patches women get get called Melasma. it contains Hydroquinone. usually just 2%.

i had used a product that was 3% after getting a some freckles across my nose and cheek bones. i thought i had used sunsceen...oops. it was called Nadinola. i got it at WalMart. about $5 for the jar.

the Mederma is very expensive. my daughter tried it about a year ago hoping to reduce a scar from surgery. well, nore like trying ot get rid of the last of the red of her hememgeoma. didn't work. i should have called and asked plastic surgeon.
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Old 01-25-2007, 11:17 AM #15
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Thank you Curious and Frogga. Frogga, I looked up the folicalwhatchamajigger and it doesn't look reallylike what I have. But, I will drop my drawers at the pain doc on monday and let them see for themselves

Curious, that's what I was thinkign. A skin lightening cream. But I wasn't sure if they made anything like that. Thank you so much for the recommendation!
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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Old 01-25-2007, 11:25 AM #16
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you're welcome lisa. i hope you get some relief from the sores and can get the spots to go away.

daily i am amazed at all the wealth of information the rsd and other forums here have.
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Old 01-25-2007, 11:54 AM #17
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Quote:
Originally Posted by Curious View Post
you're welcome lisa. i hope you get some relief from the sores and can get the spots to go away.

daily i am amazed at all the wealth of information the rsd and other forums here have.
Me too! I thought I was just weird! LOL! Now I know I'm not! WE ALL ARE! (just teasing!!!!!)
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~
right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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Old 01-26-2007, 12:22 AM #18
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Quote:
Originally Posted by LisaM View Post
Karen, are the sores on your rsd affected parts of your body, or the non-rsd parts? Yes, some of them start as blood blisters. I do know that some of them itch, and really without thinking about it, I scratch, and THERE THEY GO! Off and running. And some of them get so bad that they actually "crater" - get really deep. I haven't been putting anything on it, mainly because (and this will sound silly!) recently one of my puppies had an ear infection which made him scratch so badly that he had a hot spot near his ear. I put some neosporin on the spot and the vet said it was a no-no, cuz the air couldn't get to it to dry it out. That thought went thru my head when I started to get these sores. That if I covered them, they wouldn't heal. Welll......they still aren't healing! I shower every day, and they remain clean, but there are so many, I really can't put bandaids over every single one, and the nuskin I believe Curious spoke about....it would probably take a whole bottle each time I did cover them once! LOL!

Have you talked to your doc about them? If so, what has he/she said? Do they leave scars afterwards? Raised skin or just a discolored spot?

I have full body so yeah, they're on the RSD parts. LOL I mostly get the sores on my legs but I get the blood blisters everywhere, arms, fingers, torso. I had a couple of really small ones turn into sores on my torso and it's one of the few spot I don't have any rsd. I know about the scratching thing, I've just reached down to scratch an itch and bam! Oh, one thing I absolutely love, adore, worship is Gold Bond Body Lotion. Rub it on itchy spots and in seconds it stops itching! I wouldn't recommend rubbing it on a sore, burns a little, but for all other itchiness it's wonderful!! My boy cat Seamus loves the lotion too. It's sooo funny, I rub it on my legs and feet and he comes trying to lick my feet and then he rolls on my feet and go nuts!! LOL It's hilarious and I guess it's his "catnip".

I can see you trying to cover them all. LOL That would be a BIG bandaid huh? I think air is the best thing for them personally and just make sure you keep them clean and if any look a little inflamed then neosporin is a good thing to use, just a dab.

I have quite a few scars now but they're just like any old scar, like when you cut yourself and it heals up. I've never had any raised spots other than when they're sores then they're raised up off the skin a bit. I did bring it up with my pm when I first saw him and was told it's the RSD. He told me that keeping them clean and keeping an eye out for infection or inflammation is the right thing to do. He told me that if any started looking inflamed at all to call and come in so we could make a decision on what to do. Whether I'd need to see a dermatologist or if he could just give me something to help. Thankfully none have gotten that bad so haven't had to deal with that aspect. Hoping I won't either. The slow healing is part of RSD too. Anytime I get cut anywhere on my body it takes a long time to heal up. I noticed that right away cause I've always been a fast healer. Last year I stabbed myself in the hand with a pair of scissors. Oh man did that hurt!!!! Left a nice hole and now a really nice scar. Well anyway, it took 2 months to completely heal up and it should've healed up at least in 3 weeks or less. *sigh* RSD does suck!!!

Hugs,
Karen
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Old 01-26-2007, 08:10 AM #19
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yep it does suck - the slow healing is horrible - any small graze or anything lasts for AGES! I scrapped my thumb in November and I now have a nice hole going through it... (i did't realise my arm had slipped and caught it between the bed and wheelchair) - suppose it's not as bad as my bum (4cm hole going through that).

I sometimes feel like a piece of cheese....... (though I, hopefully, don't smell like one).

Sorry the foliculitus stuff wasn't helpful! only other thing I can suggest is that it's just one more stupid thing the RSD does... (out of interest - if they are not on your bum, do you have a pic? I reckon we should start a comparison sticky - so people can post pics of things like that and ask other people if they have had similar - cos purple spots could be anything (thus my suggestion).

Hope things are improving!!

Love Rxxxxxx
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Old 01-31-2007, 10:58 AM #20
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Well, I spoke with my doctor about it on Monday, and basically she wants me to see a dermatologist. At this office (my pain doc) if anything comes up, they won't give opinions...they either refer me to my MD, or they refer me to another specialist. They won't dx me, really. HOWEVER, she did say that she has seen this before, and not ONLY in rsd patients, but also in patients who are on pain meds. Even though I may not have had a reaction to the pain meds before (I've been on the same ones for quite a while) I may have suddenly contracted some type of allergy to it. But she won't say that's for sure.

And now...I have one on my BACK! Arggghhhh! So it's traveling. It's moving. the only thing I REALLY hope is that this doesn't mean the rsd is going to move along with these sores. And they are DEEP! Yes, some are crater-like, with a deep hole in the center. Others are just flat...but they are LARGE - they dn't even start small and get bigger...they just start out large. And I turned and lookjed at my "bum" the other day, frogga, and there is a large purple spot on it...almost like I pinched it on a door or something. But it's not sore, and isn't breaking open, so it's not like th others. By now, the others would have turned into these sores.

the doc didn't want me to put anything on them, cuz she said if there is infection in it (whcih, in looking at them, she does't think ay are infected), she doesn't want it all covered up keeping the infection inside. So, I'll let you all know when/if I get to the dermatologist what they say....

thank you all so much for your responses and advice. Yo are an awesome group. And frogga, I do think your idea of a comparison photo gallery is great. But may take up too much bandwidth. I'm not sure. I'll try to get a good pic of my OWN sores, though. I won't take a pic of my rear ones, that may scare ppl. I have plenty on my legs and the one on my back that I can take a pic of.

And I'm sure you dont' smell like cheese
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~
right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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