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I know this is weird but the last few nights when I lay down, I immediately feel like I'm on fire. And not like a hot flash where you sweat but more like an internal burning that builds. And if I turn on my side, it's worse. Have any of you experienced this?
@A MyLupusTeam Member Have you tried coconut oil in herbal tea an hour before bed? Such an odd thing. I found it in a medical article and tried it. To my astonishment it works! The tea should not be caffeinated or stimulating (camomile, hibiscus, Rooibos,...). Add 1-3 tsp coconut oil. It helped mine the first night. After five nights it helped arthritis pain in my feet 🤪. Let me know if it helps. 🤗
@A MyLupusTeam Member I can’t remember if you have done yoga before. Have you tried slow gentle yoga with Adrienne on YouTube? I started with her. Now I do Rodney Yee. Keep me posted. 😘
Yes, yes and yes. Sorry y’all have it too. Thanks for getting this discussion started. My inner thermostat is so unstable. Hard to find the right balance between clothing and room/outside temperature. Then I walk by a heat (or ac vent) or a draft and I’m undone. The burning has mostly been on one arm but sensitive to certain weaves of fabric. I hunt down those cottons that feel like liquid, buy several even in same color of something comfy. At least some of mine is SFN. It is common in autoimmune. When nerve density gets lower you become more sensitive. Today I asked neurologist about it. It’s the unmyelinated C fibers. I also believe some stems by an interplay with autoimmune and the hypothalamus. Maybe a dysautonomia. Then there is likely still some coming from cervical cord compression. Lotsa research down, more ahead. One thing that has helped is meditation, breathing exercises and yoga. It helps the body learn to better manage the sympathetic (fight or flight) nervous system and strengthens the parasympathetic so the body can calm more easily when stress and pain hit.
I do the same thing at night. It’s like my body trying to come down off of the day. I’m sure it’s lupus because I’ve been post menopause for years and I had a complete hysterectomy in 2017. I have the burning itching at times as well. Sometimes, I go into cold chills too?
Yes, I have problems regulating my body temperature at times. Sometimes half my body is cold to the touch half is very warm. I try and take a luke warm shower and it seems to help. I also have where my skin burns real bad and it’s super sensitive. Only way to describe it is when you burn yourself on the oven is how it feels. It seems like for some reason for me everything seems to fall apart in the middle of the night and I haven’t been able to figure it out yet. Hang in there it will probably go away soon. Hope you feel better.
Thank you for that advice as I go through terrible night sweats, too...Strangely when I get up into a standing position...then when I lie down it starts again...I keep my heating system practically off all night.
Went for a complete endrocine workup and they could find nothing...Must say all the doc could say....as he looked at me strangely....was it was CNS involvement. That was a guess on his part so not sure to the "why"....Sleep well tonight, my lupus friends...Susan
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