Is your neuropathy triggered by heat, as mine seems to be?

Posted by pegc159 @pegc159, Jan 1 11:24am

After months of trying to identify the triggers of my intermittent neuropathy, and episodes of very severe occurrence, I just recently observed that having the heat in my car directed at my feet sets them ablaze. Previously I found my heating blanket did this too. Is it a temperature regulation problem? At times I've complained to family that the way textures and shoes can make my feet numb, uncomfortable, and out of control remind me of the hypersensitivities experienced by some people on the autism spectrum. Living in WI, I thought I noticed a significant worsening of neuropathy as the colder months settled in with us. I seem to have preferred socks, shoes, and thermostat settings that keep my feet "regulated" more and more at home. But getting in the car and turning on that heat is sure to lead to much discomfort. Do you experience this? What strategies do you use to prevent episodes?

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Hi @pegc159, Welcome to Connect. I can relate to what you are feeling but for me it's more a sensitivity to the cold, especially during the winter months. There are a couple of discussions you might want to read through that sound similar to what you may be experiencing.

--- Heat Intolerance: Symptom of Neuropathy?: https://connect.mayoclinic.org/discussion/heat-intolerance/
--- Temperature intolerance and sensitivity - Autonomic Neuropathy?: https://connect.mayoclinic.org/discussion/temperature-intolerance-and-sensitivity-autonomic-nephropathy/

You mentioned intermittent neuropathy, have you been diagnosed with neuropathy?

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Yes my paresthesias get much worse under the covers during the winter if too warm and sun affects me too. This is common in MS I have read. (Not saying that you or I have MS.) Wondering if it is some form of dysautonomia. I have had this issue for so long I don't really think about it. I keep the temp under 60 in cold weather!

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Now that’s even more fascinating. My sister & a brother have had instances in which their blood pressure plummeted. So…this could still be caused by a Statin drug perhaps? I find the manner in which medications are prescribed so casually very frustrating, specially when WHY is this (“idiopathic” problem) happening is so unexplained. Perhaps that’s a disadvantage of our modern medicine. But how many are hospitalized or disabled by perhaps bad drug interactions?

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@johnbishop

Hi @pegc159, Welcome to Connect. I can relate to what you are feeling but for me it's more a sensitivity to the cold, especially during the winter months. There are a couple of discussions you might want to read through that sound similar to what you may be experiencing.

--- Heat Intolerance: Symptom of Neuropathy?: https://connect.mayoclinic.org/discussion/heat-intolerance/
--- Temperature intolerance and sensitivity - Autonomic Neuropathy?: https://connect.mayoclinic.org/discussion/temperature-intolerance-and-sensitivity-autonomic-nephropathy/

You mentioned intermittent neuropathy, have you been diagnosed with neuropathy?

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John, thank you! This is wonderful. While I'm frustrated by some of our medical challenges and "roadblocks," having a resource like this at our fingertips is astounding.
Yes, I was diagnosed with neuropathy. I have a arthritis in multiple joints, facing a third replacement surgery at the end of the month. So there is so much at work here - our vulnerable bodies. I am just learning to admit "I'm old" and that I have to expect these things to come along. Taking things day by day in a new way is a fact of life for people my age. One thing I found out about recently, is a genomic research project in which t I've been able to participate. It's a long term research project that will benefit scientists around the world and future generation. My five siblings and I now share such similar and yet different complaints and health concerns that it seems to me our genomes hold so many of the answers. The project, which is sponsored by the NIH but conducted in regions around the USA is described at the website AllofUs.com. They are especially looking for participants in our senior years to fill out that end of the Bell Curve. I encourage anyone who's interested to take a look and consider participating in the program.

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@pegc159

John, thank you! This is wonderful. While I'm frustrated by some of our medical challenges and "roadblocks," having a resource like this at our fingertips is astounding.
Yes, I was diagnosed with neuropathy. I have a arthritis in multiple joints, facing a third replacement surgery at the end of the month. So there is so much at work here - our vulnerable bodies. I am just learning to admit "I'm old" and that I have to expect these things to come along. Taking things day by day in a new way is a fact of life for people my age. One thing I found out about recently, is a genomic research project in which t I've been able to participate. It's a long term research project that will benefit scientists around the world and future generation. My five siblings and I now share such similar and yet different complaints and health concerns that it seems to me our genomes hold so many of the answers. The project, which is sponsored by the NIH but conducted in regions around the USA is described at the website AllofUs.com. They are especially looking for participants in our senior years to fill out that end of the Bell Curve. I encourage anyone who's interested to take a look and consider participating in the program.

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I joined the AllofUS research group also. Here’s the link if anyone wants to read about it - https://allofus.nih.gov/.

Actually got a free FitBit Versa 4 watch as part of a health data gathering study.

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I am more sensitive with hands and feet getting cold, and that can be a major distraction and performance issue in me feeling my feet. But heat is bothersome too. I try to stay in shade as much as possible during the summer, as I don’t seem to sweat to help release the internal heat. Getting in the swimming pool helps. I avoid hot showers and saunas. My water must be lukewarm, so I let my dishes soak awhile in hot water before I immerse my hands in the sink to wash them. It was extreme when my PN started 7 years ago, but once getting to the right dosage of Gabapentin for me, the extreme temperature sensations lessened in intensity and duration.

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@dbeshears1

I am more sensitive with hands and feet getting cold, and that can be a major distraction and performance issue in me feeling my feet. But heat is bothersome too. I try to stay in shade as much as possible during the summer, as I don’t seem to sweat to help release the internal heat. Getting in the swimming pool helps. I avoid hot showers and saunas. My water must be lukewarm, so I let my dishes soak awhile in hot water before I immerse my hands in the sink to wash them. It was extreme when my PN started 7 years ago, but once getting to the right dosage of Gabapentin for me, the extreme temperature sensations lessened in intensity and duration.

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The information about gabapenton helping is appreciated, as well as all the small adaptations needed. I hadn’t thought about the summer months and how that will differ. Thank you for the input.

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