Sunday, it was beautiful where I live. It got up to 75 degrees Fahrenheit. We turned on the fan and opened all the windows… I have indoor and outdoor allergies, so it isn’t like it matters whether they are open or not. J mentioned it was warm in the house. I was in my jacket and sitting with a blanket on my lap. My mom who was upstairs said “The hallways says it’s 80.”
Yep, it was 80 degrees Fahrenheit in my house and I was chilly. This is one of the things I have a lot of trouble explaining about my disease, CRPS. I don’t have “hot nerve pain” I have “cold nerve pain.” I’ve heard of people with CRPS sleeping in commercial sized refrigerators because their nerve pain sets them on fire. Obviously, they have the more common and well known version of nerve pain “hot nerve pain.” One of the women in one of my support groups stacks ice packs in her 13 year old daughter’s bed so she can sleep at night. She has it in her shoulder and arm after a car accident dislocated the girl’s shoulder and broke her arm.
Hot nerve pain doesn’t just make the person feel hot internally, it can make the skin feel hot. And about 98% of the world experiences hot nerve pain, whether it’s from CRPS or some other neurological issue like diabetic neuropathy.
I’m in the 2% that experiences “cold nerve pain”. My pain doesn’t make me hot, it makes me cold. The higher my pain, the colder I feel, and at the time I was out of pain meds after I accidentally got rid of 1/3 of my prescription last month. A doctor has in fact, taken skin temp readings from my hip, thigh, right arm, and hand. Those areas are 4 degrees cooler than the rest of my body. 4 degrees doesn’t seem like much, but when it’s internal, it feels like that part of your body has been frozen solid. Meaning at 80 degrees, I was cold enough I could have shivered, even under the blanket.
This results in some weird biological things happening. For example, during the summer I’m more likely to have hot flashes, god bless hormone changes. My face will turn beet red, I’ll start sweating profusely, and even though I look like I’m on the verge of a heat stroke, I’ll shiver because the hot flash affects my head and chest, but does not warm up the cold areas created by my hyperactive nerves. And frankly, that area is bigger than what is affected by a hot flash.
It also means that like a lizard, I am constantly searching for warmth. I sleep under a heated blanket year around. I use electric throw blankets year around and I even travel with an electric heated throw in my car that plugs into the 12v. And J who is part polar bear is constantly fiddling with the air conditioning, because I’m cold and he’s hot.
Here’s the thing, wearing more clothes doesn’t actually make me warmer. Radiating heat is about the only thing that helps, hence the smograsboard of heated blankets. A regular blanket doesn’t make me warmer. More clothes don’t make me warmer. And during the winter, I tend to wear a jacket instead of a coat, because even wearing a heavy coat won’t make me warmer. And it means while most of my fellow support group members are looking for ways to cool off, I’m looking for ways to warm up.
In one group, there was a conversation going about where would you move to help your pain. A lot of them were talking about Alaska, Northern Canada, even Siberia, and I’m like “somewhere tropical.” When you have hot nerve pain, heat triggers your pain. When you have cold nerve pain, cold makes your pain worse. Packing myself in heated blankets, works exactly like packing the body in ice packs or sleeping in a commercial fridge.
I mentioned I use heated electric throw blankets all the time. I do this by plugging in the throw, putting it over my lap, tucking it in around my hips, and putting a second throw blanket over top of it. I pack them nearly everywhere, even during the summer, which gets me some strange looks, but you do what you have to do. Heat will also soothe my pain some.
And that is why I shiver even when it’s 80 degrees. Oddly, a lot of nights, when I’m in bed, I’ll cover up with the heated blanket and the comforter and then stick my feet out from under the covers.