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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 08-03-2008, 07:08 PM   #1
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RSD Lesion?

Can anyone tell me if they have ever got Lesions from your RSD/CRPS? What do they look? Anyone have a issue with the Dr about them? She told me they have a handful of people with CRPS, and she's never seen anyone with this and have Lesions or sores on their limbs from it.. They are sending me to a Dermatologist on Tuesday. We will see what she says I suppose. Thanks for anyone in advance that can help me with information

 
Old 08-04-2008, 05:05 AM   #2
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Re: RSD Lesion?

I've had lesions about 1 1/2 yrs into having RSD.. They are totally normal.. I was treated some type of topical cream.. I can't remember the name of it.. I did help alot. When I get a chance I'll look through my cabinets for it...
Going to a dermo is probably the best thing to do.. It sounds like your dr probably doesn't know how to treat it...
Its weird.. When I first started with RSD 7 yrs ago.. I had all those skin problems.. My hands peeled like sun burn would.. Both palms.. this was before I even knew I had RSD.. I had those lesions all over my ankles.. I nails would grow like weeks, and my hair would fall out like crazy.. But after having it for about 3 yrs it all seems to disappear.. Which is a good thing.. LOL..
I mentioned in another posting that I swear by the lidocaine infusions. That is what saved me.. Since I had them everything seemed to calm down so much.. It didn't stop the spreading.. but it did get me off alot of meds.. Which is the goal of treatments..
Iam getting off course here. sorry.. I just wish other drs out there would do this treatment more often..
Michelle

 
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Old 08-04-2008, 06:07 PM   #3
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Re: RSD Lesion?

I was happy to read about these lesions. My RSD started in my right foot which is where I had my bunion surgery. It has since spread to the other foot and up both legs to just short of my knees. It has also recently spread to my wrists.
I have had these "sores" or lesions behind a few toes on my right foot. At first I thought they were from athletes feet. But it never spread like athletes feet can. I used an antibiotic cream and a athletes foot spray on it. Eventually it would go away. I get this lesion every couple of months or so. When I have the lesion and try walking it feels like the lesion is breaking open and it starts to sting.
It's not as painful as it is bothersome. Can anyone tell me how the RSD can cause these lesions? And what other treatments have people have used to help them go away? Thanks,
Chris

 
Old 08-04-2008, 07:07 PM   #4
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Re: RSD Lesion?

Ahhh, the beauty of the "rsd rash" LMAO! I've "seen" more people that get a rash or lesions with rsd than those I've seen without them! Drs like to think they know it all but they don't! If they say something "can't be" rsd then they haven't seen enough rsd'ers! *rolls eyes*

I've had lesions since the beginning. I didn't know what they were at first. Mine look like blood blisters, some big, some small. They sometimes stay looking like red dots and others open into a sore. No matter how small, they usually take up to 2 weeks to heal fully. Longer sometimes if it's big enough. I'm thankful none have been very big but I've seen some truly horrible sores on others, some that look like craters almost. *shudders*

Rest assured, it's not in your head! LOLOL

Hugs,

Karen

 
Old 08-05-2008, 08:52 AM   #5
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Re: RSD Lesion?

Hi, I had alot of trouble with sores in the begining and the doctor gave me a round of prednisone and a cream called Triamcinolone Acetonide usp .1%. This is what help me and now I only get them ever so often and I still have some cream just in case of another break out.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 08-05-2008, 07:31 PM   #6
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Re: RSD Lesion?

Hi everyone,
I just found out last Friday I have RSD as a result of ankle surgery and re-injury..I am out of my mind with fear.....between yesterday and today, I have a rash on my foot and a little pimple-like thing that will probably break open tonight or tomorrow....I don't have an appt. 'til Aug. 12 with the newly assigned next step: Pain Management!!!
Should I soak my foot in epsom salts or is this not a good idea. Any other advice, hints as to how to slow it down is appreciated. Pelae understand I am very frightened and new to all this. Thanks for being there!!!!

 
Old 08-05-2008, 09:41 PM   #7
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Re: RSD Lesion?

Soaking in epsom salts in the bath feels really good and does help. It's also very good for everything else!

I know you're scared. *hugs* The 12th will be here before you know it. I hope the visit is a good one and you get the best care possible. When was your surgery that caused the RSD?

Unfortunately with RSD there really isn't anything you can do to control what it does or where it goes. The best thing anyone can hope for is a very quick diagnosis (dx) and aggressive treatment. What I mean by that is, getting physical therapy to keep blood flowing to the affected limb as much as possible and so as not to lose any movement. This also helps prevent atrophy from non use of the body part. Getting nerve blocks, lumbar for the legs and ganglion for the arms, and very important also, medications to help control the pain and/or any other symptoms so you can get the most out of all the treatments.

One BIG thing since it's so new to you...NO ICE!!! Ice isn't good for RSD, especially when your skin already feels cold to the touch. Ice actually does more harm than good as it ups the pain level as well as further constricts the blood vessels when they're already shut down so badly to begin with.

Keep us up to date with how it goes and in the meantime....take a deep breath and try to relax. Easier said than done I know but getting upset only makes the pain worse and there's nothing you can do until you see the doc.

Also, if you have other questions you might want to start a new thread since anything you want to ask about tend to get lost when put into someone else's thread about other things.

Big Hugs,

Karen

Last edited by moderator2; 08-09-2008 at 02:17 PM.

 
Old 08-06-2008, 02:57 PM   #8
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Re: RSD Lesion?

I too was dx with rsd after a foot surgery. I saw a neuro to confirm. He put me on Lyrica, so far it cuts down the burning-pain. I don't know about lesions yet. Foot is in a cast. Epson salts sounds really good. It is a scarry disease, I have read a few articles on the internet about it. We who have it will need all the hugs we can get as it progresses. Pain management is the first avenue of defense. Keep posting. Big hugs!!!!!!!!

 
Old 08-06-2008, 10:52 PM   #9
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Re: RSD Lesion?

I thank god everyday for you Karen, You have gave me amazing info on this horrible part of our life. They changed my appt so I go on Friday now 9:30 it's a 41 min drive there and back. I get so upset, All these years of school these dr's go through and you would think Bedside manner would be course 101. I visited my new PT, and OT on Tuesday, they are amazing.. They don't look at me like you are 26 get over it. They treat me like I'm someone they are trying to do everything they can to make sure I don't lose my leg. She gave me great things to do at home to keep the blood flowing in my ankle and foot. I told my Pain clinic dr i think it's going into my hand. I had broke my finger about 2 months ago and my hand isn't getting any better it's starting to get really sensitive, she's like oh well you are too early I think your fingers just sore from braking it.. I want to look at her like are you serious...
You treat people with RSD.. And You know almost nothing about this.. I'm really thinking about changing pain clinics. The best part what my pain clinic PAC.. I don't see the dr just her, is like are you sure they aren't just bug bites that you have been My mouth dropped I'm like I have a HUGE hole in my leg, not unless I got big by something that was really hungry. Thank you everyone else that have givin me advice and to the new people here you really came to the right place.

 
Old 08-06-2008, 10:56 PM   #10
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Re: RSD Lesion?

Thanks, everyone, for your responses regarding the rash, etc. I did go to urgent care as my appointment with the specialist (pain manaagement, yikes) isn't until next week. She gave my the same cream (triamcinolone acetonide .5%) and I put it on the rash tonight. The M.D. on duty was wondering if it could be shingles...at least she had heard of RSD...the pharmacist where I filled the prescirption had never heard of RSD...wow, all that training and didn't know what it was!!! Hmmmmm !! I'm trying to keep up beat..I work full time work keeps me distracted as I am still in the dark about the next step for me...I am walking to keep my post surgical/injured ankle mobile and trying to keep the blood flowing, etc...but the ankle hurts like h--- from walking on it!! Thank goodness for this posting site and I will try to start my own thread once I figure out how to do it!! I am trying to deal with my fear. I made the mistake of reading everything on the net about RSD and I shouldn't have..becasue I read evrything about the worst case scenarios....I hope we can all go into remission!!!! Healing light to all of you!!

 
Old 08-07-2008, 06:21 AM   #11
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Re: RSD Lesion?

Hi Tigerlily, I hope the cream helps you out, it was the only thing that helped me especially when it start itching. Also, I used the Wal-mart generic brand of Eurcerin cream which comes in a big round jar and it's only like $3 or $4 compared to the original brand which is like $12. It helps with the dry itchy skin and it is a real thick cream but it helps. I can see why the doctor thought you had the shingles because you break out with little tiny red bumps with the shingles. My mother had them one time but they really hurt from what I was told.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 08-07-2008, 09:48 PM   #12
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Re: RSD Lesion?

I'm so happy to be able to help you and everyone else understand all the crap we deal with. I have read and still do read some amazingly dry articles with lots and lots of big words in them! Good thing I like big words!! LMAO I always try to take all that gobbledygook and put it in words everyone can understand, use my own experience, and so many others I've talked to, to help everyone.

I remember seeing somewhere just lately someone asking why we get these sores. The closest thing I can come to explaining the why part is the lack of proper circulation. We should think of our limb(s) with rsd in it (them), like a diabetic's legs. Diabetics are at high risk of getting sores or even risk amputation all because of the lack of circulation due to diabetes. For them though, they have no warning, the sores just appear. For the majority of us, we do have some warning, the dots, spots, whatever you want to call them. I've come to feel the difference in my spots and to tell which may become sores or not. The ones that do, tend to feel slightly raised off the skin. Sometimes it's very subtle, but it's there. The ones that aren't always go away. If I'm lucky the raised ones go away too without a whimper. LOL

There's another tidbit of info for you!

I'm so happy that your pt and ot are so awesome. We meet enough of the idiots, that it's so great when we find ones, docs or pt's that treat us so well. It's never "too early" to spread. Geez.....*rolls eyes* It goes where it wants, when it wants! With all the new info out there, you'd think these docs would be more educated for sure. Never ceases to amaze me how stupid they can be. It will also often go to a spot if you injure yourself. Not always, but it can. Just keep an eye on things. I'd change docs too if I were you. See a sore so deep and call it a bug bite! OMG....ROFLMAO!!!!! Yeah, it was done by a mosquito, ya know, one of the prehistoric ones!!!! LOLOLOLOL And to think....you didn't even feel it bite you! Wow....amazing! *yes, sarcasm included* ROFL

Ok....off I go!

Hugs,

Karen

Last edited by moderator2; 08-09-2008 at 02:17 PM. Reason: unnecessary quote

 
Old 08-07-2008, 09:51 PM   #13
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Re: RSD Lesion?

You're doing everything right and a good attitude is one of the best things we can do for ourselves. Hang in there!

As to how to start a new thread. On the main page you should see up top, a big blue button that says, New Thread. Click on it and wa-la! Give it a Title, make your post and submit, you're done.

Hugs,

Karen

Last edited by moderator2; 08-09-2008 at 02:16 PM. Reason: unnecessary quote

 
Old 08-08-2008, 09:44 AM   #14
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Re: RSD Lesion?

I went today.. As I walk down the hall out of this very strange dr's office.. I laugh to myself.. I look at my honey and I get that look like are you going crazy.. She looks at the huge sore I have in my ankle and the 6 other spots.. I KNOW for how much my Pain Clinic Dr wanted me to go to this other dr and was so sure it would come up Cellulitis or shingles, when she gets the report back that this lady says it's folicolitis - Folliculitis is most often due to something occuring on the skin with bacterial infection, friction, trauma to the follicles, plugging of the follicles, etc. The dr said, these sores can be causes by the RSD like what you said the lack of proper circulation. I kinda would love to be the fly on the wall when My PAC gets the report back, yet I would probably laugh so hard I would fall off the wall. She gave me this foam and has me coming back in 4 weeks. So If this doesn't help her with what my PCP has already said in CRPS, then I really have not much hope for this place.

 
Old 08-08-2008, 06:22 PM   #15
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Re: RSD Lesion?

I really hope the foam helps the sores to heal fast and also that it helps with the dumb doc! LOL I know what you mean about laughing so hard thing...I still think I'd be that fly on the wall anyway, falling off due to hysterical laughter or not. LOL

Hugs,

Karen

Last edited by moderator2; 08-09-2008 at 02:16 PM. Reason: unnecessary quote

 
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