Dang...I always thought she had fibro...

I'm going to have to google now! LOL!

Hugs
LisaM

I looked at what he said in just the opposite way as you did Lisa, I saw it as a comfirmation that the disease is so debilitating that it does make most people have to get on disability. I would hate for him to have said everyone could work like she does with it.

As I told you, I do have a good friend that is a nurse that works with it and I also know a lady that owns her own insurance company and she has it but she sats her own hours.

I think also a lot of people that have it also deal with other problems as well such as Fibro and the injuries that brought it on. We also seem to develop other problems easily such as Interstital Cystitis and Fibro and depression

My depession is just that. I deal with major major depression and it came before the RSD with other medical problems and childhood problems. The illness just adds on to it.

It is good that a person can work, I would say it does help them a lot with depression but I also think it can make illnesses worse as time goes on. I feel a person can overwork themselves and they just reversed that survey where years ago they thought that more a person worked the better off they are.
Bill said he saw it on the news where a new survey showed the opposite.

I understand where you have to work to keep insurance and to have an income and that is with a lot of people. I went for years without any income and I know how that is. There are a lot of people on here that struggled for livelyhood until they got their SS or SSI. It's a choice we each have to make in our own way.

As for the heat issue. I also have cold part where the RSD is but I'm sitting here sweating like Jose said. I just never noticed anyone saying they were dealing with this before and It's interesting that it does seem to come with the RSD.

Thanks for all of the input.
Ada

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. :eek: 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. :D 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

Paula
 

I agree with you and I do not think Paula has RSD and like u said she would not be a good representative of what this disease is all about- We need a real celebrity with real RSD- I agree with you that IF she had it she would not forget what the letters stand for!! People would think RSD is not so bad-just look how good Paula is doing! Just gets me mad

Deb

Hi Jules,
 

On Paula's story on E they did say she had 16 surgeries on her neck due to injuries and botched surgery and they said she had arthritis.

I agree completely with you on the spokeswoman part. She has been pointed out for her off the wall behavior and I do believe it's from her meds. She said on that story that she took more meds then I think 15 people put together or something to that effect. I don't think none of us take that much.

We did discuss this on the old forum when it first came out she had it in 2004 or early 2005 I believe. I even have a newspaper article that says she acts the way she does because of the RSD itself and not because of the meds. I didn't quite get that one. I don't think it makes us act looney. I am very forgetful sometimes but not off the wall kind of things like she has been seen doing.

If you get to see that story you will know what I am saying. It lasted 2 hours on the E channel and I watched it just to catch the input on the RSD. It doesn't take a genius to see that she's not acting normal when they sat and talk to her personally in that story. We would need someone as a spokesperson that acts normal at least 99% of the time for anyone to take notice and have respect for them, I would think.
Ada

This is where I bought a couple pair last year. But you can go type Leg Warmers into your favorite search engine & it will bring up sites where you can find patterns to make them or buy them. But this one I found the ones I liked the best.

They also have arm warmers on some of the sites. So if you could use those you could probably type that in also.

http://www.sock-dreams.com/_shop/pag...egoryID_71.php

Hope this is helpful.

DebbyV

Well.... no offence but I would really dislike it if she was a spokesperson.. i mean..... honestly... can you imagine going - yeh, im in so much pain i can barely move etc etc etc and I can't do anything but yeh- that dancer on TV has it....yeh....

then try and explain why I can't move

If she really has it I am very sorry for her but also jealous that she has so much freedom. As it is the RSD is very sparse on full body RSD'ers with dystonia - so every reading of the literature I give friends means they go "....and you can't walk.........WHY?"

Temperature really affects me.... any change at all is agony, wind burns my skin, (as does rain, ice etce tc)... my chest and neck are bright red and burn whilst my fingers are blue and my arms burn - and my legs are ice cold to my hips and then I'm apparently ice cold to my stomach.. Also does anyone find they can't feel temperature properly? I have burnt my fingers so many times from not realising that what I am touching is hot - apparently thats cos my CNS is being attacked by the RSD...

Oh well.... (hope this makes sense... REALLY bad day atm but trying to keep going..)

rosie xxxxxxxxx