Paula.... I saw her on Larry King in the last 6 months. She did not say she had RSD..she sort of skirted it, saying she was treated with Enbrel for Arthritis - I think she actually said arthritis in her neck, but I am not 100% positive of that. The thing that got to me was the got the words that RSD stands for wrong. She did get "reflex" right. And her explanation of it to Larry was not very good. I don't know about you, but after about 2 days of being diagnosed, I don't believe I have forgotten what RSD stands for.
That's what made me wonder if she indeed did have it. I stayed up and watched the re-run in the middle of the night, just to be sure what she had said. I don't remember now exactly what she said. I think I posted about it on the old forum, and may have written there what exactly she said. I think it may be a good thing she is not a spokes person for us.
Temperatures -- My understanding of this is that our Sympathetic Nervous system does control our body temperature. Part of the Fight or Flight thing. I can take my temp. and one hour it will be 96.2 and couple hours later, 100.3. It is all over the place. I have become the queen of the cardigan sweater.
I feel very lucky I am not sensitive to touch - I don't know how you all do it. Although, I used to be able to wear any kind of wool or fiber - now I cannot unless I put a cotton Mock-T under.. so I am a little bit sensitive. A doc at the Clev. Clinic told me that is because I started so soon with deep tissue massage after my RSD hit - that it can keep you from developing the full blown touch sensitivity. Similar with wind - I can stand most wind/air.. unless it is a constant wind of some force... then it makes me worse, if it is summer or not. Intersting that massage could help that - but she said that you have to start it very soon after getting RSD to avoid the problem... other wise, your only hope is the desisitization. (shivers thinking about that one - I don't know how all of you do it that have this horrid pain and the full blown sensitivity)
My RSD started in my shoulder this time, and my forearm and hand on that side will be ICE cold sometimes - then just 5 minutes later can be normal... other days it is ice cold all day and the is nothing I can do to get it warmed up, sometimes it is just a little cooler than normal. It is not predictable... I carry one glove with me almost everywhere.
I used to be able to go out in winter here in Ohio, down to at least 30 degrees with only a light shirt on to work in the garden. I loved winter. Now, I get so deep down chilled even if I am properly dressed, it takes me hours and hours to get warm. But, there is no way to know when it's going to be a deep down bone chill day, and when it's going to be an ok day -- so I never know how to dress. It does seem to be linked somewhat to the barometric pressure - when it is dropping -- I will be colder - but this has not been 100% of the time.
I used to sleep all winter with just a flannel sheet and a thin cotton blanket. Now I have an electric bed warmer and 3 polartech blankets. (bed warmers are great if you have RSD in your back! It's like a giant heating pad you lay on)
In the summer, I used to be able to go out and garden in the heat all day - even if it was 95. I didn't like the heat, but I could do it. I was what you could call an extreme gardener. I used to sell plants from my home garden, and I spent many a day out selling when it was 105 out. Now, if it is over 80- 82 or so, I don't dare go out and try to do anything, or I get heat stroke symptoms. My gardens had become a weedy mess because I physically can't do anything like I used to -- and now, I can only do things in certain temperatures. So - this fall, I cut the size of my perennial gardens by 3/4.
There is no question in my mind that RSD has affected my actual body temperature.... as well as the way my body reacts to the air temperature around me.
Geeez.. it's affected about everything in my life.
Jules