Have any of you seen the story on Paula Abdul on E News. I just watched it today but they run it every few days. She talked about her RSD. I watch her and how she acts and I know she has to be on a lot of meds like us and you can tell she is.

Her Dr. was on there and he says that one of the symptoms of RSD is that you are hot all of the time and can't seem to cool off. I really didn't know that was one of the symptoms of RSD. The idiot pain Dr. at the U. of Co.
said that not being able to control your body heat or cold is part of the Central Sensitization Syndrome that I have. I just know that Bill and I fight over the temperature of the house. He's on Cumadin to thin his blood so he is freezing and I'm burning up all the time. He has a choice of running around with a coat on or watching me run around this house naked. Believe me he wears a coat. LOL

I was wondering if any of you have this problem. I have not seen it discussed on here too much.

Have a great evening.
ada

Ada, I wish I had saw that.. You know this is crazy but I used to be so cold natured I could never get warm, but the past year or so I burn up all of the time. It can be cold outside and I will be sweating.. A friend of mine that is cold natured told me the other day that I had serious problems because I was sweating like crazy and it was in the 40's, and I had no coat on..

I have never even ready anything about this.. Thanks for sharing it though. I will have to do some searching to see if I can find anything more on this.

Love Ya,
Janet

How old was this enews show-? I remember her doctor retracting the statement that she had RSD. I do not believe she has it!

i find it both ways - usually im freezing...but feel like im burning up and way too hot... other times I'mburning and feel freezing. RSD really does mess with thermoregulation...

rxxxxxxxxx

Sometimes I can get so HOT that I become nauseated to the point that I actually vomit. I keep a med on hand to control the nausea. And I do all I can to cool down. This happens whether it is hot or cool outside. Same inside the house. It can be really warm in here or cool in here & I get hot & nauseated.

But also during the last year I now have times when I tend to get cold when there is no reason to be cold. And I have to keep my ankles warm but still can't stand to wear socks. So I wear leg warmers bunched down around my ankles. I bought them online as I couldn't find them anywhere else to buy. I am just sorry it took me 2 yrs to figure out that they might work & to go looking for them on line & to buy them. But hey they worked.

Take care ya'll.

DebbyV

The only thing her Doctor retracted was that Enbrel was NOT used to treat her RSD. It was Paula who said that it was used to treat her RSD. The doctor said Enbrel was used to treat the form of Arthritis that she has.

Altho some Neurologists will state that Enbrel has been used experimentally in the treatment of RSD, and used successfully most cases. I went to one who used Enbrel successfully during a study at a University hospital in San Franciso this. I feel the reason he actually did that retraction is because you are only suppose to use Enbrel for a specific type of Arthritis & a skin disease, psouriosis (I think I spelled that wrong), I think it is called.

DebbyV

I really don't know how old the show was but they discussed things in 2005 that has happened to her. Debby is right they didn't say she didnot have RSD.

I just wish she would have chose to be a spokesperson for RSD as well as diet problems such as bolemia.

They also said on that show that any other person that has RSD would be on disability. She's blessed to have enough money to get anything she needs to keep her going. There are people out there that can work with it but I don't think many. I have a friend that is a nurse and she has it in her right foot and leg and she has kept working. She says blocks has kept it in check for her.

Anyway back to the heat. Those leg warmers sound like a good ideal. I can't stand to have anything on my feet either. I get too hot if I keep socks on my feet.

Do any of you have trouble dealing with the summer. The summers are worse on me in a lot of ways then the winter. If I get too hot, I'm a mess.

In the winter, my worse times are when the barametric pressure changes is when my RSD really acts up.

It just really blew me away when that Dr. said that people couldn't control their heat with the RSD. I just never associated it with the RSD.

Ada

Well, I'm still working...and full time...my rsd is in both hands and other upper areas (I really should make a signature so I don't have to keep retyping where it is)...and I do all of the office work for a small office. All the biling, payroll, invoicing, etc. Luckily it's a very SMALL and very SLOW office. however, I haven't filed ONCE this year, so tht's a mess. Fortunatly my boss is like a second fther to me. I've been here 8 years, he understands how much pain I'm in. I MAYBE do one shipper a day....sometimes as many as 3, but I don't have to type much into it. It takes me about 30 seconds to do. I dont do letters to anyone, etc. The most typing i do is personal, here, to you gys...but I can take my time. And I'm on a huge dose of fentnyl, plus percocet. The doctors are working w/me to try and keep me working...cuz ppl generally DO do better when they work. It' good exercise, and keeps you from flling into a depression. So, I dont like that he said specifically "any other person that has RSD would be on disability." I'm another person...and I'm not on disability. I'm fortunate. I SHOULD be probably, cuz by the time I leave work, I'm in such HUGE pain that I am usually crying my eyes out the rest of the night. But, I need he nsurance, the paycheck, and my boss has said on MANY occassions that when he retires he's considering GIVING hte business to me nd my coworker (who is the only other person working here - told ya it was a small place!) So how can I give that up, ya know?

Secondly....Summer is HORRIBLE for me. Heat is my MONSTER. Heat from the stove when cooking....any slight increase in the temp. Winter, the cold hurts. I'm sensitive to BOTH ncrease an decrease in temps. STinks really! As fr my body heat...the only thing I've found is that I tend to sweat more easily when doing MINOR exertion. Like walking at a slightly increased speed from one place to another, or reaching high (when I'm feeling good eeough that I can) or helping to clean (again, when feeling good enouh). Minor exertion makes me sweat. And sleeping. i wake up SOAKING WET - but that could be a med side effect.

Hugs
LisaM

Ada,
Well..I reckon that I am a weirdo. LOL. I can't deal with being cold. Not at all. And, I tend to stay cold. All the time. It is awful.

My RSD parts tend to be colder than my non RSD parts. There are sometimes when they are hotter...but usually it is that they are colder. Like now. My right hand and arm and foot and leg are like ice, while my left ones are just cool. And there is absolutely nothing that I can do that will get them warmed up. Not enough. I stay chilled, literally to the bone, all Winter.

But, in the Summer? AHHHHH! When it is nice a warm outside? You can catch me out there, soaking up the heat like some sort of lizard. LOL, that is why I say I am a Lizard Woman. The only thing that keeps me from being outside all the time is the humidity here. I can't deal with the humidity. It causes me problems. When we have spells of nice dry warmness, then I am out there like a shot, soaking up heat like that lizard on a rock. I can't get in the sun, because I burn so easily. I always have, because I am pretty fair skinned, but that has gotten even worse since RSD come along(not being fair skinned, but the burning. LOL)...and one thing I have learned is that you DO NOT want to deal with any type of sun burn, no matter how mild, on RSD places! YOOOWWWIIEEE!!!

I found out just how much better I feel in places that are very dry and warm when we went back out West to visit my Folks during the Summer a couple of times. Once was just out to Vegas during the Summer (Temps up to 117!! Felt like someone was blowing a hair dryer at you whenever you got out of the car! AHH! Finally WARM! LOL), and the other was a couple of years later when we went down to Tucson for a Family Reunion in July (Temps between 110-115, if I am remembering correctly..although there might have been a 120 in there one day. Have to go back and look it up). I was in Heaven! Seriously. The only problems that I had, were the same ones that I have when ever we go back out West to visit, and that is that my ankles swell something awful. I think that it has something to do with the flight out there, the changes in pressure and possibly altitude? They swell horribly, and become very ugly. My RSD one worse, and on that side, even my lower leg swells, all to the point of it being kinda weird to move it, because of the skin being so tight. I also get more back pain, but I think that is because my Mom does not have one single solitary back friendly chair in her entire house. I kid you not! So, I wind up sitting in the wheel chair a lot, with a pillow behind my back for some lumbar support, which does seem to help (at least it feels better!). Plus, that mattress she has that I sleep on there is hard as pavement (converted waterbed, with rock hard mattress and no box springs). LOL. But...It is all worth it to see them, so I don't complain. And...all of that aside, my RSD Pain actually lessens. So, back pain goes up some, but RSD pain lessens. I'll take back pain any day over RSD pain, thank you verymuch! LOL

All of that only goes to tell me even more that I think it would be a good idea for me to move my kester out West, back where I belong, and away from all of this damp humidity. Because even in Winter when we go to visit my folks in Vegas at Christmas (which we are going next month! Yay! I can't wait! Will get to spend Christmas with my brother too! First time in...well...too many years!! I am soo excited!), and it is cold and windy, I STILL do better there than I do here (apart from the weirdo swelling, that is). Not as well as I do in the Summer when it is so very warm (some would say HOT..LOL), but much better than I do here.

But, back to what you were asking....I tend to most always run cold. Occasionally I will be warmer...but that doesn't bother me, whereas I can not stand to be cold. It hurts me, badly. Warm feels good. Heat helps me. It iskiling me to not be able to use my heating pad this year...but my doc has scolded me so much about it, that I can not. See...I over used it so badly, that I put all kinds of marks on my back that took the entire Spring and Summer and into the Fall to fade away. I *think* that they are all gone now...I can't twist around so good to look, but from what I can tell, I can't see any. Finally. He told me that I was "Burning" myself with it. I told him I was not. It never felt too hot. He said that was the problem. I couldn't tell that it got too hot. SO, I am grounded from using it, because doing that to myself can cause some pretty bad problems in the future, evidentially.

Hmmmmm. I couldn't tell that it got to hot. Maybe that is kinda sorta similar to what you are doing...just in a kinda sorta bass ackwards type of way? ROFLMAO! Leave it to me to be the bass ackwards one! I mean...I am saying "AHHHH" to 117 degrees that feels like a nice hot blow dryer in the middle of Summer heat. I must admit, that can sound kinda weird, and like someone that can't tell when things might be "too hot". My poor kids were melting. I freeze in here all winter, partly to keep the electric bill down, and partly because if I warmed it up enough in here so that I was "Warm", the would be stripping clothes off and running around red cheeked and sweating. Hmmmmmmm.

Man. This is making me really miss my heating pad. LOLOL. I am like some kind of adict. It is sad.

Ok...I am going to go. This has gotten long (what else do you expect from me? ROFL) again.

Love and ((hugs))
Jose the Lizard

My feet and ankles are freezing a lot of the time. Socks don't even seem to help. Where did you get those leg warmers on line. I have the same response to temperature. Sometimes feels hot and then sometimes cold. Confusing. I have RSD and FM and Meralgia paresthetica. The MP is really affected by the heat. It sets the nerves wild in my legs - electric shocks. Ugh!
Thanks
Sydney