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Total body anhidrosis and other issues


Jim67

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I began getting pins and needles in my toes nearly one year ago. This gradually progressed up my legs and then my forearms and hands bilaterally. It is always worse during hot baths and after walking. 

Then, this summer I suffered heat exhaustion and nearly heat stroke after being trapped in a very hot train during a heatwave. 

Immediately after this I noticed that my body wasn't producing any sweat. Since then, my whole body is completely dry. There is a tiny amount of sweat from my feet, hands and armpits. Additionally, I feel too hot to go out and I've become housebound. 

I've noticed my heart rate is sometimes quite high. 

I still don't know if this is autonomic neuropathy. 

But the anhidrosis and heat intolerance has severely changed my life. I cannot go out and I'm currently trying to figure out how I can get ac at home as even indoors temperatures are just too high in summer. 

How do you cope? Have you lost your job due to anhydrosis? 

What hope is there? 

Doctors have never seen anything like it. One doctor even told me there's nothing to worry about if I don't sweat.

I feel desperate. My life has changed permanently.

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Hi. I am sorry to hear that you are having such problems. I have similar issues. I have autonomic dysfunction and peripheral neuropathy. I also have sweating issues. I overheat easily and also my limbs freeze in cold weather.  The worst of my symptoms came on 10 years ago and for the nerve pain, I take Gabapentin (Neurontin) and Nortriptyline. I also have a fast heart rate. 

In the summer, I use a tower fan, drink lots of iced water and the best thing ever is my cooling vest which is a vest with ice packs inside it. I love my vest and bought it online and it is used all summer to stop me overheating. In the winter my torso is a fiery furnace and my arms and legs have to have layers of clothes to keep warm. 

If you need any help or advice or even a chat message me on here. I wish you well as I know all this can be scary at times. 

(PS I also have EDS, POTS and MCAS)

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Hi Jim67, welcome to DINET! I'm sorry you are experiencing this. Have you been able to see an autonomic specialist? I've been having periods of not sweating in the past (I think up to several years) but things came back to normal. Not sure why but it sure makes my life easier. Not being able to sweat can be quite dangerous I've been told. Hope you will find some answers.

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1 hour ago, corina said:

Hi Jim67, welcome to DINET! I'm sorry you are experiencing this. Have you been able to see an autonomic specialist? I've been having periods of not sweating in the past (I think up to several years) but things came back to normal. Not sure why but it sure makes my life easier. Not being able to sweat can be quite dangerous I've been told. Hope you will find some answers.

I've not been anywhere the last few months. Summer is over but it's still not cool enough to go out if the sun is out. A few days ago, I left home to get groceries. Bad mistake. The sun came out and I quickly began to feel too warm. Physical exertion + direct sunlight can easily overheat you if you can't sweat. 

Was your loss of sweating allover?  What made it come back?

I've read steroid therapy is the only treatment and results are varied 

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2 hours ago, TCP said:

Hi. I am sorry to hear that you are having such problems. I have similar issues. I have autonomic dysfunction and peripheral neuropathy. I also have sweating issues. I overheat easily and also my limbs freeze in cold weather.  The worst of my symptoms came on 10 years ago and for the nerve pain, I take Gabapentin (Neurontin) and Nortriptyline. I also have a fast heart rate. 

In the summer, I use a tower fan, drink lots of iced water and the best thing ever is my cooling vest which is a vest with ice packs inside it. I love my vest and bought it online and it is used all summer to stop me overheating. In the winter my torso is a fiery furnace and my arms and legs have to have layers of clothes to keep warm. 

If you need any help or advice or even a chat message me on here. I wish you well as I know all this can be scary at times. 

(PS I also have EDS, POTS and MCAS)

Can you tell me where you got the vest?

Have you considered air conditioning? 

I'm in UK too

 

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I bought mine off eBay, but you can get them on other sites. Mine has removable ice packs front and back. Yes, I have considered air conditioning but decided against it as the units are quite big and wouldn't fit very well in my cottage, also you have to vent it out of a window, which isn't always easy or convenient to do. 

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