Hi Thali, it is good that you can control something that is a result of your pain. So many times there is nothing to do but to let things go when it co9mes to our physical appearance. I have to let my hair and other things go when my head is pounding. Iam glad you brought this up. HUGS

I don't have RSD but just wanted to comment on the hair thing and I can relate to some of what you say.

A few years back when I was in my 30's this friend I had suddenly said "omg look at your hairy toes"
I looked at them and I have to tell you I had never noticed how hairy they were and I was horrified and embarrassed.
And from then on I have been conscious of my toes during the summer and make sure they are shaved. I don't know if the excess hair had anything to do with the RA which is an autoimmune disease and I do have foot pain but I just can't remember ever having hairy toes when I was younger and before i got the disease.

Now winter is here. I have cut back on the shaving. It's just more work for me. I also have hair coming out of other places. It's annoying having to shave and pluck unsightly hair from places it never use to. I think now it is just my age and it's probably hormone crap going on.

Hey, Perhaps those people in the waiting room also shaved their feet. maybe they were hiding it too.

I have RSD and I have the opposite situation. I used to have hair on my left toes (bad foot). As the years have gone by I have less and less hair there. I luckily had a procedure called a chemical symptothectomy shortly after diagnosis. It really helped my RSD! My foot does get very sweaty, but the burning pain is to a minimum.

Hoping you are having a low pain day.

Heather

Hmmm, maybe I'm just a hairy person. ;) LOL! Actually the hair on my left foot is uglier than sin but I can't STAND it so I shave it. And the nail thing is just so weird! If you look at my right foot compared to my left foot, it's night and day. And the hair grows more in Winter! Just another weird RSD complication.

I wonder if Paula Abdul had this problem? ;)

Like Heather, my affected arm has less hair than it used to. The fingernails on that hand are thicker than they used to be. The arm sweats inapropriately. Just a conglomeration of abnormalcies.

The sweating is normal, as are the thick nails. I'm glad I'm past the point of having to attract a mate b/c my foot is SO ugly with the nails and sweat (which comes and goes and leaves my foot generally shiny) not to mention the color problem. One day the toes went blue and the ankle area but the middle of foot just sweated. Looked like a flag.

But I guess I'm the only one with abnormal foot hair! ;)

It is interesting talking to other RSD patients b/c the few I've known all had it in other areas, not the foot. I'm suspecting that my knee might be affected but until I get proof I'm not willing to admit that my RSD has spread. Not after SO long w/o it spreading. When I broke the ankle on my right foot, my Fam doc was SO sure RSD would set in. When I hurt my arm and was in a sling for a month, my CP doc just kept waiting for the RSD symptoms to show. But luckily they didn't.

The fact that the RSD crept slowly up the leg shows that it has spread a little, but given the opportunity, it could've taken over my body! I'm very LUCKY that it has not spread to the point where I can't control it. So if a little toe/foot hair is the price I pay for ONE area of RSD, I'll take it!

Nope not the only one- I have gorilla feet too! And yes I remove the hair as well. I have to use a spray on hair remover because I can't stand the feeling of the shaver on my feet ( I have RSD in both feet, Both arms, and going into trunk area- so if the arms/trunk get more hairy I really will be a gorilla...lol)

I have to remove the hair for two reasons, one it's so darn ugly and reminds me of how much things have changed and two the slightest touch to the hair growing/sticking out on my feet and legs can be severely painful when touched by clothes or sheets.

Strangely enough, the original site of injury, my left hand got terribly hairy especially on the back of my hand, but it even tried to wrap around onto my palm, and when I used the hair remover on my hand, it never grew back, and now the hair on that arm is thinner and patchy. But my legs are just the opposite, the hair there is thicker, longer, and at times looks more like a pelt then hair if I let it go too long. However, it hasn't covered the bottom or sides of my feet just the top, especially the toes.

All my nails on feet/ hands grow thick, long and break off easily at least on my fingers. The toe nails are just nasty looking beasts. I trim them as often as I remember to, which is not often enough compared to how fast they grow.

During the summer, I am very aware of the hair and have to keep up with it because it's so darn embarrassing! So I know how you feel. During the winter months I wear ogg boots and they hide the hair well. But as stated, I still keep it down because of the added pain it can represent.

Hope that helps reassure you that your not alone in the hair problem.

Well I'm sorry to hear you have it too b/c I know what a pain it can be, but also in some odd way glad to know I'm NOT the only 1? LOL- does that even make sense?

Yes perfectly- I'm kinda glad I'm not the only one too...

Mine is in my trunk, so I don't have that problem. I'm certainly sorry to hear that you do though!

MMom - Your RSD started elsewhere and then moved to the trunk? That's pretty rare!

Italjen- Has your RSD spread? Mine hasn't, and they're hopeful that it won't. Still, you never know.

About Paula Abdul, I don't know. Could you keep her schedule? I couldn't, and I'm years younger than she is. She's done a few interviews where she was totally high. I don't presume to know anything (God knows I hated it when people have made that assumption about me before), but I do wonder a little if that's how she keeps with her lifestyle. I honestly don't know how else it's even possible. Did you ever see her reality show? It was pretty bad. I saw one episode where she acted like a t-o-t-a-l b-a-b-y. I have maybe twice in my life seen other adults act as childish. Stomping, crying, throwing a tantrum to get her way. It did make me wonder again if excess meds could have been involved, because the mood change was SO quick.

I hate that you ladies have this, but I sure am glad there's a way we can talk to others about it. When I was first diagnosed I was completely in the dark. It was awful. I'm sure you've been there.

S.

My RSD didn't spread for over 14 years, and then it only went up into my leg, past the ankle. Now the knee may be affected, not sure, but I went a LONG time before it spread at all. If you look at my photos in my profile, you'll see my foot in a BAD RSD flare before it spread above the ankle. It looks worse than it is.

As for Paula, I DID see the show- how could anyone look away? It's possible that she WAS overmedicated and didn't know it, but when I as titrated, I KNEW when the med and level were too high, and too low. That's how we titrated me to the proper dose. My questions is, after seeing that footage, was she STILL so messed up that she thought they could pass it off as her just being "tired". I saw her eyes, I've seen eyes like those in the hospice where my mom died. She was doped up- whether by docs or on purpose.

I REALLY didn't mean to start a war about Abdul- I just said that IF she had RSD she could've come out and helped a LOT of people. But then she works in Hollywood where any hint of using pain pills has to be either b/c of plastic surgery, or b/c one is an addict. So she may have been scared. But still, with ALL her help and she had plenty, how could they let her appear on TV like that? Why wasn't there a doc there 24/7?

She said she had it for 25 years, all through the Hollywood years. She moved normally, even gracefully and is an amazing dancer. I just don't think she had RSD. IF she comes back out and it was a "remission" I might buy it, but then I'd say, wait a minute, you can stand up and be a spokesperson for CP! But she could NOT appear
or be inebriated (she drank while taking pills? Who does that?) I didn't even sip the champagne at my wedding!

With her it is always wait and see. If she has it, I feel for her, but will always be angry at her doctors for not finding the right dose and sticking to it, and to her, for allowing herself to be seen that way. It took me a month or so to titrate to the right med and dose. I didn't work during that time b/c I was teaching kids and didn't feel that titration was good for any of us. Luckily I found another job in my time off that I thought would be better for me. After 4 years, I was happy to take my travel writing assignments.

Paula, Paula,. I'd LOVE to know how she did it all. Or IF she did it. Interesting, isn't it? We may have someone who has RSD but she claims to be cured (and later the doc comes out and says he gave her anti-inflamatory injections to cure her "arthritis", NOT RSD.

My 2 yr old son's trying to type this so time to go, LOL!

My RSD is in both of my hands and arms and possibly my back and legs. I've had many surgeries and my body is a disaster! LOL!

My fingernails grow like crazy and I about can't keep up with them. My hands and arms use to be hairy but just stopped. The hair on my legs grow real slow now and i'm not complaining at all about that! My toenails do want to grow in crooked and I get alot of hangnails and have to dig them out! Ouch! Very painful.

Also the hair on my head grows super fast! Figure that one out.

I have the shiny palms and shiny feet. I have the sweating.

RSD is a strange condition. It's a mean condition! It affects our whole body's system. The sympathetic nervous system runs through the majority of the body and is going to affect many parts of our body. How many of you have problems with your teeth? I bet most of you. It causes fatigue. It causes depression.

I hope you all find some relief.

Hugs,
Toni

I wish that the doc would just tell me that what I'm experiencing is normal for RSD. Instead, he just types in everything I tell him. You know..."patient states..."

I'm thankful to be able to come here and find that my symptoms DO fit RSD.

Last week I went to my doc with my unaffected hand wrapped in an ace bandage because the thumb needs help. It's been painful for several months, and I use a Lidoderm patch that he gave me for just that purpose. I wrap it in the ace bandage to keep the patch on. Now he's making me go to OT for BOTH hands. It's not gonna help, it's just gonna make it hurt worse. It's not in the joint or the bone, it's the nerve that hurts. I guess I'm just gonna have to turn my SCS up a bit on that side too. Does it sound like neuritis to you?

Keesha, your dr isn't telling you, because he doesn't know. You know what it feels like. Does it feel like rsd? Alot of people with rsd also get fibro and/or arthritis too. Just be real with yourself you are your best advocate.

Hugs,
Toni

Keesha- it may NOT be RSD. It sounds like it but there are SO many other things it could be! I just flinched when I saw that you hoped he would just call it RSD b/c I wouldn't wish it on anyone! Really-n it is VERY difficult to live with. It's cost me a lot and I keep thinking about how long I'll have before I end up in a wheelchair, or worse. I'm only 43 and I push myself to keep going. But if I could trade this for something treatable, I'd do it in a second!

I'm praying for you, that you find out WHAT it is, and that it's something fixable. I get where you're coming from- it sucks not knowing WHAT you have. But don't wish this on yourself. If it is RSD you have your entire life to deal with it, but if it is something they can work with, that is SO much better.

Good luck Hun, and keep me posted!