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Support for small fiber neuropathy with cold intolerance sensory nerve

Posted by gcattnu39 @gcattnu39, Jun 23 4:29pm

I have idiopathic autonomic peripheral small fiber neuropathy that has damaged my cold and hot sensory nerve endings. I am extremely sensitive to cold temperatures and my body is sensitive to cold and hot objects when I touch them.
My symptoms became a lot worse three years ago and after getting Covid this winter. I am freezing all of the time from head to toe.

Does anyone have these symptoms and has anything helped with the symptoms?
This all happened after a car accident and I injured my neck again!

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julbpat | @julbpat | Jul 11 8:27pm
In reply to @sbtheplumber1 "@julbpat Do you have trouble with sweating after taking the pilocarpine? First day I took it..." + (show)
@sbtheplumber1

@julbpat Do you have trouble with sweating after taking the pilocarpine? First day I took it I went to work at a factory and had temperature check for Covid and I had a temperature about 15 minutes later it was gone , so I started waiting until I got to work to take it. Sometimes after I took it I would just start sweating so much I asked to be switched to another medicine which they put me on Cevilemine big mistake I would wake up soaking wet from sweat. I just recently switched back to pilocarpine and the sweating is not as bad

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Well, that could be true for me! I think I’ve been taking it for about four years. When I started, I sometimes only needed it twice a day. Now I really need it 4X a day. I even keep some by my bedside in case I wake up early with a parched mouth.

My sweating has progressed as my SFN has progressed. I don’t sweat as much in most of my body anymore. It is concentrated in my scalp and face. And I mean dripping within 10 minutes. I know that excessive sweating is part of SFN, and I would expect it to get worse over time. But I never paid attention to the pilocarpine intake, and timing! I’m going to start monitoring that. The pilocarpine is effective for up to five hours, I think. That makes it easy to monitor whether it’s causing an effect.

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sbtheplumber1 | @sbtheplumber1 | Jul 12 10:38am
In reply to @julbpat "Well, that could be true for me! I think I’ve been taking it for about four..." + (show)
@julbpat

Well, that could be true for me! I think I’ve been taking it for about four years. When I started, I sometimes only needed it twice a day. Now I really need it 4X a day. I even keep some by my bedside in case I wake up early with a parched mouth.

My sweating has progressed as my SFN has progressed. I don’t sweat as much in most of my body anymore. It is concentrated in my scalp and face. And I mean dripping within 10 minutes. I know that excessive sweating is part of SFN, and I would expect it to get worse over time. But I never paid attention to the pilocarpine intake, and timing! I’m going to start monitoring that. The pilocarpine is effective for up to five hours, I think. That makes it easy to monitor whether it’s causing an effect.

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Yes mine is mainly the scalp , face and arm pits, usually within 10 minutes. Since starting back on it the new rheumatologist just put me on one pill but my tongue is parched all the time!

REPLY
julbpat | @julbpat | Jul 12 1:09pm

I did some reading. Pilocarpine starts to work in about 20 minutes. If you pay attention, you will notice increased saliva then. Also, it helps with my dry eyes, and I feel this. It peaks in about 1 hour, and lasts 3-5 hours.
This info should be enough to convince your rheumatologist to increase your dose. I follow the recommendations for Sjogren’s, although I test negative. I am also labeled as having SICCA syndrome.

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