[mountainwoman]

Hi, everyone, I am new. I am in a power wheelchair and when I go out people pat my arm, hands etc. Even when I explain, they then will touch the other hand. I am getting to the point I am afraid to go out. People I don't even know do this. Any suggestions?

Thanks mountain woman

[firegirl]

When I first had the RSD symptoms & wasnt diagnosed yet, my doctor told me to put my RSD arm in a sling. Thinking back, that is the only time that people did not come up and slap my bad arm when its obvious that my arm is not ok. People touching me is usually the worst part of leaving the house. For some reason its better if someone roughly hits my arm. When someone lightly rubs my arm it is excruciating. If i didnt have to deal with this, maybe I could stay out a little longer. So, I would recommend putting a sling on your RSD arm when you go out. That way people will know not to touch it. You can buy slings cheap at a drug store. Only wear it when you are going to be out & around people that dont know not to touch you. You dont wanna wear the sling too long. It is good to bend & use your arm the tiny bit that you can. Hope this helps.......I need to go back to doing this myself.

[peppermintpatty]

I honestly don't know. Mine is in my leg. Yesterday we had to go to the ER. The ER doc swore he knew what RSD was, but then proceeded to *squeeze* my leg in the worst possible way. I seriously thought my sweet husband was going to punch him. Then the doc was like, oh, that hurts? Really?

I mean, I realize that if our specialists don't know much about the disease, ER docs know even less, but it's not THAT hard to listen to a patient. Really, it's not.

[finz]

Shy of hanging a big sign around your neck that says "CONTAGIOUS", I don't have any great ideas.

I am lucky to not be as super sensitive to touch as most RSD'ers are. My issues are mostly to the left of my neck over towards my shoulder and the left front of my neck to my collarbone. I'm okay with the perfect bra and tank tops most of the time and those aren't areas that strangers normally touch.

I do have issues when socializing with friends. My family does the peck on the cheek for greetings and saying goodbye. My friends are more huggers. Parrothead friends who have enjoyed too many cocktails and HANG on me when hugging is the worst !

If I see the hug coming, sometimes I can dodge it and say, "Oops, no hugging today, bad neck day" but often I'm trapped. It must be so much more difficult for you....stuck in the wheelchair, you're more of a sitting duck

[finz]

On reading the thread title, I had my response of "Just tell your husband/bf/so.....not tonight !"

[Jomar]

If you can see it coming try to head it off by simply saying my skin is very sensitive & painful, please don't touch me. (meaning no touching at all...)

Or if you have an appropriate/ acceptable non RSD place that touchy people can touch without causing you pain just tell them where it is OK to touch you..

They should remember if you keep it simple.
Like- It's Ok to touch here, but not here or there..

[daniella]

Hi I can relate. I have had RSD for 4 years. Anyhow no doctor touches my legs which are the rsd area that is my rule. The ones who deal with RSD a lot are ok with it and understand more. At the start of the condition I used to allow touching by the docs but it served no purpose other then to add pain. As for people being it my legs it is less of an issue then with the arms for you. I do keep a distance from people. At stores everyone I let go ahead of me etc. I wish I had more answers for you. I would just tell people you can't be touched at all and you are sorry. I would not even explain to people I didn't know why. I don't get why people as I say have to enter my square. I feel that way even with close talkers. I hope you can find a hapy medium. I know that for example I love plays but won't go to one cause of crowds. I am trying to take more risks but you know it just takes 1 knock to not want to anymore.

[mountainwoman]

Thank you all so much for your kind words. It just helps talking to others who understand. I am going to have to wear a large sign until I get some large buttons made that says " Do not touch me at all, severe spinal cord injury, touching me anywhere could cause medical emergency."

[nevadabound]

hi im new here hubby has rsd 3 yrs now and has that same problem people wanting to pat you on the arm or back he has rsd right hand now traveling up right arm, im happy to found this site for him and me. i bought my husband a nice sling it come up higher on his arm then the ones from the drugs stores and nice padding on it seems to help with warmth as well , and his arm can relax instead of always trying to keep it in a bent postion becasue he cant let it hang straight down. you all are great here.

[Lisa in Ohio]

HI All, I have discovered a strange thing this winter. Since I have gotten to the point that I am always freezing to death I have started carrying a pashima shawl with me at all times. They are very lightweight and very warm and the fit in my purse easily. But the odd thing is that if I have this draped over my shoulders and I can tuck my arm underneath it and it is not available to be touched. This had been a real problem at my church, but this shawl thing seems to have eliminated most of the unwanted touching, plus it helps keep arm/shoulder/ neck warm. Lisa