Skin and Hair Changes In RSD

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From: byrd45 (Original Message) Sent: 8/18/2005 6:47 AM
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 5/2/2004 10:30 PM
Hi everyone,
I decided to post this today since I know I will be tied up tomorrow with my doctor's appointment. This week I wanted to talk about RSD and skin changes. RSD affects so many things including your skin and hair. Sometimes there can be a loss of hair or a thicker growth of hair on the part of your body affected with RSD. I am bringing this up in case you have noticed this happening to your body. I know personally it is easier to handle these changes when you know they are part of the disease.There can also be changes in the skin as well. Some people call it the RSD rash and can appear without notice and can disappear or not depending on the person.Sometime the skin can get a tight shiny look in some people with RSD. Keep in mind that everyone is different and you may never experience these things from your RSD or you may. We are all individuals the disease can affect each of us differently. I am not trying to alarm anyone or saying this to scare you. I feel we all need to be aware of what RSD does so that we can try to understand it for our own sanity.I personally had a really strange rash about three months ago and the dermatologist had no idea what she was looking at. I received a strange look when I asked if this was connected to my RSD. She said no I think it might be a form of eczema. It didn't itch and was not sore or open. It looked like bruising under the skin in rings on the bottom of both feet and lighter areas on my leg stopping at the knee..I asked her if she knew what RSD was. She said oh sure it is a catch all they use when they don't know what is wrong. DUH? I wanted to scream but I didn't I stayed calm and told her that RSD was a disease of the nervous system. I then said how could she be sure it wasn't RSD if she didn't even understand what it was. No answer oh well I tried.I put the cream on for two weeks and it got worse not better. Went to my second appointment and she looked and told me she honestly was perplexed and really wasn't sure what was going on. She then reccomended a biopsy and I told her no way was she doing it without permission from my neurologist. Some things can spread RSD and no way was I letting her do that without talking to my other doctor first. She gave me a second prescription to try for another two weeks and we agreed if it wasn't gone at my next appointment she would confer with my neurologist. I was going to an appointment with one of my RSD doctors two days later. I showed him and he knew right away it was from the RSD. He told me don't bother with the cream it won't help. I had been using it for two days and it wasn't changed at all. I stopped using it and three weeks later it disappeared on it's own.I was told that the rash was a sign that the sympathetic nervous system was having problems moving the blood and little bits of it were pooling under the skin instead of being circulated properly. The good news was that it wasn't dangerous just another annoying symptom. The bad news it can come and go at will and there is nothing to do except treatments for the RSD. He asked me if I was going in for a treatment soon. It turned out I got an epidural done a couple weeks later and the rash went away during the following week after my treatment. I would love to hear your input or experiences if you have been through any of these changes as well. Just add them to this post.
Best Wishes,
Robyn




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From: byrd45 Sent: 8/18/2005 6:49 AM
From: <NOBR>therese521</NOBR> Sent: 5/2/2004 11:20 PM
Robyn,

That was really interesting info about the skin changes. Personally I
haven't noticed too much of a change of hair coming or going near my
original site (my right foot/ankle), although we have noticed some vague
changes at different times. But the RSD is now spreading to many other
areas of my body and I'm seeing wierd stuff all over. I have however
noticed that a lot of my hair falls out when I wash it, actually in
clumps, which is not new, but comes and goes and is much more obvious
recently.. Also, and this is very coincidental, I've had a new rash on
my face. On other sites/pictures of people with RSD I've noticed some
very drastic facial rashes on RSD patients at the later stages. Since I
was 14 years old I've used Noxzema on my face because soap always dried
it out. Because of that I never got "zits" or that kind of thing on my
face at all, except for literally one, once a month. However the past
couple of weeks Joe and I have both noticed a very distinctive rash on
my face. It's not really bright or horrible, but is definitely there and
noticeable. Obviously, I'm assuming it's something to do with the RSD.

Good luck on your appointment with your neurologist tomorrow. Personally
I've been through at least 6 neurologists in the past 9 years, all who
have either given up on me or I had real problems with and didn't want
to see them anymore.

I can COMPLETELY understand the "I don't know" or "I have not idea what
to do with you anymore" attitude. I think that's one of the worst things
for me. I get so depressed when I hear those words. As I said, right now
I'm dealing almost exclusively with my GP. His attitude of just wanting
to help me be comfortable, (although he said he will read up on RSD for
me) attitude is exactly what I need right now.

You're definitely in our Prayers, as is everyone on this site, as well
as their families, friends and caregivers. Thank you so much again for
making me not feel so lonely with this anymore. It's unbelievable that
after 9 years I've finally found others to talk to about this. Sometimes
that can help more than the best Doctors or the strongest medications!

Therese 521


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From: <NOBR>byrd45</NOBR> Sent: 5/3/2004 8:48 PM
Hi Therese,
How are you doing today?Thanks for your input I really appreciate it. I noticed the same thing with the hair falling out when I shampoo and for so long I thought I might be imaging things.I know better now and I am glad you brought this up too. It slipped my mind until you mentioned it in your post.Your GP sounds great and any doctor who is willing to try and make you comfortable and learn about the disease is excellent in my book. I think it really terrible that those other doctors gave up on you. You didn't ask to be sick and they obviously weren't willing to try and help you. I am so sorry you had to go through that been there and it is a terrible feeling. Of course you would feel depressed after that anyone would you needed their help and because it wasn't an easy fix they gave up and let you down. The good thing is your GP isn't willing to do that and thank god for that right! I'll post later and let you know how the doctor went I am so tired.Thanks for wishing me luck.
Robyn