Hi everybody,

In the past month or so, I'm pretty sure that my RSD has spread to my lower right leg. It really, really hurts, and my ankle and knee are starting to get very stiff at times.

Ever since the spread started, the bottom of my right leg and the ankle have been swelling and changing colors, and I have been hiding them under my clothes. I always wear long pants, even on weekends when it gots hot (unless I'm in the back yard where no one can see me). The only person that I let look at my leg is my husband. I don't even like to look at it, it scares me when I see that it's red, swollen or mottled, or has hives. Of course, sometimes, with RSD being so random and weird, it hurts like crazy but looks almost normal. I don't even want my PT to see it. It's almost as if I'm thinking "if I don't look it, maybe the RSD is not really there..." Plus, I'm embarrassed because I think it is ugly. Does anyone have an RSD arm or leg that is nice looking??? For instance, I was working in my yard one day about a month ago and my teenage daughter was horrified at the sight of my leg - she asked me what was wrong with it. She thought it was gross. It was the first time that I became aware that it had started to swell and change colors.

Do any of you ever act that way toward your RSD arms and legs? Do you hide them even from yourself?

XOXOX Sandy

Good question, Sandy!!

I am exactly the same as you! I HATE having my RSD limbs on display and always try and hide them if I can!

I usually wear my Ugg Boots so that they 'hide' the state of my leg apart from the foot rotation but they hurt my leg quite a lot due to the hypersenstivity so I can't always wear them.

I also tend to try and wear long sleeve tops to stop myself from seeing the swelling and bruising in my arm. That is REALLY hard though, especially when my arm is really swelt up as I usually can't get long sleeve tops over my arm and have to wear short sleeved, baggy tshirts.

It's becoming Summer over here in the UK so I can't wear my Ugg boots that much. I really want to wear short skirts and dresses but don't like wearing them due to the state of my leg! My hairs grow a lot so I am always having to shave otherwise I look stupid but then my RSD leg goes purple and blue lol - guess it's a no win situation!!

I don't think anyone would really like people looking at their RSD limbs lol ! I know I am VERY self conscious of how my leg and arms look and sometimes hate going out of the house if they look really bad - I guess it's slightly worse for me because I am already a self conscious teen lol!

Very good question, thanks for bringing it up! I'll be interested to see what others have to say!

I don't care who sees my arms and legs. I take the opportunity to educate people about rsd when they ask about the odd color or whatever. It has never bothered me though, not even when my leg swelled like a balloon. I've always looked at it as, I'm not ashamed of whatever rsd does, it's not my fault and I can't control it.

Hugs,

Karen

Sandy, The most color change I get is in my original injury area, my right hand. The areas Its spread to luckily seem to stay mostly normal in color though will sometimes get red but nothing like my hand. Especially in the winter it will turn purple & red. Or if I use it too much. The thing that kind of hurt might feelings is when I ran into a friend once & it was like that. She worked with me when I crushed my hand. She said she hated seeing it all purple & swollen because she could hear me screams in her ears. It was the way she said it. Like it was my fault some how that this happenened to me & was still happeneing & it was several years later. Now its almost 18 years later & its ruined my life. Wonder what she would say now. I get my nails done even though it hurts because my nails are so ugly from RSD & meds. I hate doing it but love the result. Have a good weekend.
Hugs, Denny

I dislike the fact that in the last year, I have gained at least 75-80 lbs..when Neurontin was introduced into my cocktail of meds. At first it was 300 mg..then 600 mg..then 1200 mg from family doc(35 lbs gained in short period of time).
PM doc doubled my Neurontin from 1200 to 2400 mg daily, in 1/09. The proof is in my chart..I have gained 35 lbs, more, in the last 5 months.

I am not use to carrying this weight around. I feel trapped with the RSD/CRPS I as it is..the weight gain adds insult to injury


Oh well, I just have to get over it, somehow.

I can barely walk with a cane. So much for working out.

I am not the only one that has had to endure weight gain from medications.
I am on a new diet and do eat healthier.

I know what you mean, Dew.

I have put about 35lbs on since developing RSD 2 years ago which is a lot, especially for a teenager. I never used to be really skinny but was just a nice size but now, I am way too big!!!

My GP was worried about my weight a bit and said that it could be making me feel slightly worse. I told him that I knew I was overweight but that I couldn't exercise because of my RSD. He said that he wanted me to lose some weight and told me to cut down on foods which didn't help so he decided to put me on the Cambridge Diet. You aren't supposed to go on it under 16 but my dr agreed that I had to do something about my weight.

All I can have a day is either 3 milkshakes or some soups. I guess i'm 'lucky' as I don't have to worry about the diet affecting my medications as I don't take any seeing as though they don't help.

I have been on the diet about 3 weeks now and have lost over 14lbs!!!! I still have a long way to go but it's a start!

The diet is really tough but it helps! I have started adding a small meal every day now as I felt pretty sick beforehand.

Please don't give up hope, Dew! I know it is hard but please know that we are all here for you!

Take care.

Dear Dew,

The cat is a scream...I really love the animation you add to your messages! It's great.

One of the reasons I hated Neurontin was the weight gain. Because I still work I have to dress every day - and I usually need to get "suited" because of my line of work (YUK!!). I can't afford to replace everything in my closet so I need to keep my weight in line.

I was only on Neurontin for less than 2 weeks and I gained close to 10 lbs. And I don't recall that I was eating much crazier than I already do. That stuff was like poison.

Good luck to you, and take care. Sandy

Of course my pain control is number 1 but with my rsd and my eye condition my appearance going down the tubes does not exactly boost the self esteem. I have a severe eye condition and have sores in addition can't wear make up and I just feel so ick about myself. With my legs I can only tolerate certain items and textures and only can wear tennis shoes. Like I said my number 1 is to be healthy and be pain free then vanity but still with both things going on it can be a downer so I can relate. I wish though people would not comment that makes it harder. I know the comments people make are very hard but reminding yourself what you need to do for the best quality of life and health and some things are not in our control. I am on weight gain again but am on neurontin but still just on 900mg. I know many of these meds cause weight gain. Dew I think you were asking of Topomax and that I was told makes you loose weight. Not to say you should go on that for this purpose but if you have that as a concern with meds but need pain relief Topomax may be an option. I wonder what causes the weight gain with these meds is it slowed metabolism if one is not eating more. I can't imagine it being that much water. I have no clue. You think there would be a med to counteract. Many thoughts

Thanks "Mom!"

I think we all needed someone to tell us that. You are the best.

Have a nice day. Sandy

Hi All,

I don't really care what other people think when they see me covered on my arms and legs in lidoderm patches. I take it as an oppurtunity to educate people about RSD. I also figure my comfort level is more important to me than what other people think. I wear flip flops all the time when out and shorts and usually just a baseball shirt. It hurts to much to wear shoes or long pants or a long shirt. I would rather be more comfortable pain wise then trying to hide my condition from other people. If a person has a problem with how I look it is there problem not mine.

Kate