Originally Posted by crpsage16:(

Aw im sorry Bramble . I also have major temperature issues. My mom says I have "manopause" LOL. Anyway I also get these things I call them the "bee stings" and my body also has major temp issues. It is 81 degrees outside and I am freezing, then I could walk into my house and be too warm, etc. Like when I'm driving (about to get my license), my mom always has to change the air conditioning at least every 5 minutes from cold to hot! I hope you enjoy my response as I did writing it hehe.

Originally Posted by Brambledog

WARNING: Angry rant / pity party.

I don't know what the heck is going on with the weather here in the UK, but there's another storm coming in, the barometer is dropping, and every cripsy bit of me is shouting loudly tonight...

The last couple of days this has been coming on, I've been feeling crappier by the day. My body doesn't know what to do, my temperature regulation is all over the shop - I'm freezing cold, but the heating is right up, my knee is blue cold, my shin is red and hot. My whole left leg is burning from lower back down to the purple corpse-like tips of my toes. My hips and back ache. My original site (left knee) is alternating between fiery hot and icy cold every few minutes. A new region, the left side of my groin FFS, is acting all kinds of crips. My R (unaffected) knee feels hot and sore. My hands ache, my arm skin is hyper sensitive. My side burns, all the way up the side of my neck and into my hairline. My head aches, the skin between my eyes is permanently furrowed with lines from pain. I feel about a hundred years old.

I hate it hate it hate it. My cheerful outlook has deserted me tonight and I just want to burst into tears. Wouldn't do much good, so I'm doing the traditional VENT out to all you kind folk who I know:

A) get it.
B) have experienced this kind of crap and lived through it.
C) give two hoots.
D) aren't going to patronise me.
E) know more than pretty much every single frickin useless doc out there.

Like all of you, my normal persona hides a lot of pain. Tonight the mask is off. This is me. And I want it to stop.

Bram.

Originally Posted by Brambledog

Wel I've lost it. Hip pain is horrific today every move I make, burning and shooting down my leg and around my crappy knee too. Burst into tears after even playing piano made it worse, no relief in any position. Don't know what to do with myself, poor husband and daughter don't know what to say so say very little...I hate this damn disease, it's so awful on a bad day, you just can't put those feelings and emotions into words.

Hope you guys are doing ok, hope someone out there in the research world is pushing hard to find a way of relieving this pain...

Bram.