HI, i'm usually on the Thoracic Outlet Syndrome forum here.

Personally, my RSD has calmed somewhat with the 60 degree cold here in California. But, crap this Fibromyalgia stuf is full body with the cold. My RSD calms with the cold. Increases with the sun & heat; obviously its the vascular TOS issues. The TOS muscle spasms increases with the cold. Love the cold much better than the heat. Its so messed up. 1 condition loves the cold, 1 condition likes the warm not heat 1 condition doesnt like either.

YES sk8ter it is out of control! Cant sleep nights, the days can be torture with the RLS and with constant constipation from the opiods.

Hi Cyndy,
I live in Arizona and know what you mean about temperature change. The heat is so horrible on me-I hate leaving the house in the summer. The winters are really warm enough to be pretty comfortable. I have fibro also.
I wanted to share with you about my sleep problems. I wasn't sleeping all night till about 5-6 a.m. My Dr. was doing a 200 person study on seroquel. He put me on the study-took me off ambien cr and put me on 300xl mg. I sleep 10 hours a night and it is wonderful. The study for the pharmaceutical company was for fbromyalgia and they found it also helped with sleeping. He is writing the report, which I will send to you when I get a copy of it. He is going to start another study with this drug. I'm so grateful for the sleep-less pain. I'm also on a high anti-oxidant diet-is tossociety.or your e-mail or the organizations e-mail? I don't have tos? What exactly is tos? I know a lot have it. I've had RSD 15 years following surgery-Wasn't diagnosed for 4 years also have fibro.
Take care, your friend, loretta

Hello Cyndy!

I was dx'd with Fbro long before I was with rsd, and I personally think that there's just a matter of degree's. Really, what's the difference, my chiro was able to dx the Fibro, it took a neuro to dx rsd. That's the diff, imho, and experience, which of course may not be enough!

I, like you have difficulty with temperature.

I was in two crazy accidents.
The first gave me rsd and tos.
The second added a tbi, and kicked up the rsd, up up up!

After the first, I just wanted to be warm. I couldn't be too warm.
Now, after the second, I run the A/C more than the heat!

I can't seem to stop sweating after a shower. I hafto take a cold shower, and I wish it were for the normal reason! (No such luck).
Anyway,
the humidity and barometric pressure changes make a big difference.
From the first injury, I found that when the barometer is "falling", I felt pain. Once it stabilized, even if it was raining/snowing, I was OK. Rising or High, was good.
The humidity, I just don't like it over 50% relative (to temperature).

You can buy gauges for this @ a place like Graingers, (they won't be fancy, but they'll be accurate), if you buy fancy gauges, they won't be accurate. That's the trade off.
But, you can tell with your body just as well. Unless you need to prove something to your doctor or insurance company.

For instance, now that cooler weather is coming...
And the heat will come on...
The heat takes the moisture from the air (This is where "Relative" comes into the equation),
and, as you raise the heat, you Lower the humidity. Thus, your skin will "give off" more humidity, just the same as if you're sweating! While it's warm! Yep! Then, you get the "chill", and the cycle starts!!!
If you don't have a humidifier in your home, here's some simple things you can do.
Water your plants, use a hand sprayer with just water in it, and spray it around! Yep!
Run the Shower, HOT, into the bathtub, with the stopper CLOSED! (Keep the hot water in the tub! don't let it overflow!) Be sure that any exhaust fan is turned OFF! The idea here, is to get that "Steam" into the house. Now that I'm stuck in a little apartment, I do that for 5-10 minutes every evening!
If you have "Radiators" buy some aluminum pans at the "acme" and put them on the radiators, and put water in them. This way, they'll emit the moisture into the air. (any nasty "scale" left behind is just minerals in the water. You can put them in the dishwasher, scrub it out, us tin foil, put some dish soap in there, or us Distilled water, like you SHOULD for your Iron, and CPap machine...(Now you see why your Iron calls for that)!

You can actually feel warmer, with a higher humidity! If you turn the heat Up, with no humidity, you'll "Feel" colder!
If you don't believe my 40+ years of experience in the business, google it!

This is why, in the summer, we feel much "cooler" with lower humidity! (I designed my home's A/C to work harder on humidity rather than just blow cold air!) It works well, and saves me $$$.. I have a few other tricks up my sleeves, too.

Now to the embarrassing constipation with Opioids.
Nothing easier to fix!
Go to your friendly drug store, and buy over the counter MiraLax. (RiteAid has a store brand now).
Go easy. This stuff WORKS!
Use it by directions, and once it works, go probably a little lighter. (you can tell you're OD'ing on it, if you use too much paper)
AS my Doc say, it keeps the world moving...
Be patient with it, it WILL work!


I hope, (after writing this book) that I've been some help!

Seriously, sorry for the tomb!

Pete

ASB

Oh Cyndy,
I am so sorry you are hurting. I had the worst flare for the past week too. I think it is the weather changing. I do better in the sun and worse with the cold. Go figure? Probably all those years in the ice rink with cold.

I hope you get some relief soon. Are you going to have any DVDs of your conference for sale? I would love to buy one. I saw Dr. Jordan two weeks ago and he said it was a good conference. How was your trip?