Here is a really good overview of some of the strange body temperature and other problems we face I note that a few people who suffer with the heat have bought cooling vests.
Living in the UK, it’s not often that heat is a real problem. But when it is – it is very difficult to stay cool. Having said that, for me (and others) being hot is never the issue. We sit in the bright warm sun of a Summers day, wrapped in a shawl and shivering like crazy. To say our body’s thermostat is bust, is an understatement!
However, beware! Sometimes you feel shivery and cold when in fact you are hot and wrapping up to get warm without checking your temp can lead to heat stroke, even if you are still shivering. I only learned this recently. It’s a good tip because I have been in the habit of wrapping up if I’m shivering.
But in the Winter my temp drops signficantly. This is not uncommon with this illness. Like most dysautonomia/FMS people my basic temp hovers around 96.6 to 97.1 F which is about 35.8 to 36 cel. So pretty low. I get very cold, very quickly and along with the lovely Reynaud’s phenomenon I get real problems with increased pain and confusion.
Here’s a tip I’ve found helpful. First of all invest in a good pair of arthritis thermal fingerless gloves. You can wear them under a normal pair of gloves for extra warmth. They are great at joint pain control and I have found they reduce the Reynaud’s which is great. The very ends of my fingers are more or less dead now, especially my right hand, and the Reynaud’s just makes things worse. But these gloves genuinely reduce the pain and white wrinkled fingers that Raynaud’s can produce.
The other thing I’ve found helps me a lot is having some nice shawls. Not good advice for the men I’m afraid. But shawls are great. They go on easy, and when that heat wave hits, they come off, and go back on again as your temp drops so fast. I love my shawls. They also double as Montessori work rugs when required :)
You don’t need me to tell you to buy thermals. And ladies, those high waisted firm control panties – they help the nausea and the pooling as well as adding extra warmth.
Thick socks for warmer feet of course, and those ridiculous thick woolly animal slippers that come half way up your leg. I have overcome the children’s tendency to laugh at this by providing them with their own pairs.