[Pinksweetpea]

I am still searching for answers and interested to know if any of our members who have autonomic neuropathy, have the symptom of heat intolerance? I have been diagnosed with large fibre polyneuropathy, but I think I may also have autonomic neuropathy?

For many years I suffered from urinary retention and three years ago had to have a permanent indwelling catheter because of this. There was never a diagnosis for the retention, but now I am wondering if it is caused by autonomic neuropathy, as I have read that this can affect the bladder as well as other organs.

I have noticed that I am more sensitive to heat than anyone else I know and it doesn't feel "normal" to be the odd one out. Because of this, I am trying to find out if there is a possible nerve connection to do with the heat sensitivity? I know that its not caused by the menopause because I am now in my seventies and have had this problem since my forties. If anyone can shine a light on this I would appreciate it very much and any comments would be very welcome.

Thanks for reading this, Pinksweetpea

[en bloc]

HI and welcome,

Heat intolerance is a common element of autonomic neuropathy. Since you have other symptoms (urinary retention), then it IS likely to be related. There are also common aspects of autonomic neuropathy...like orthostatic hypotension (BP drops when you stand up -- making you dizzy/lightheaded), increased heart rate, and stomach fullness, bloating, nausea from gastroparesis. Do you have any of these other problems? Do you sweat easily in the heat...or not at all.

Either way, you should consider testing for autonomic functions. A QSART is a very detailed sweat test to see how you respond to heat. If you have other symptoms I mentioned above, there are more testing options.

Do they know the cause of your polyneuropathy?

[Kitt]

Originally Posted by Pinksweetpea

I am still searching for answers and interested to know if any of our members who have autonomic neuropathy, have the symptom of heat intolerance? I have been diagnosed with large fibre polyneuropathy, but I think I may also have autonomic neuropathy?

For many years I suffered from urinary retention and three years ago had to have a permanent indwelling catheter because of this. There was never a diagnosis for the retention, but now I am wondering if it is caused by autonomic neuropathy, as I have read that this can affect the bladder as well as other organs.

I have noticed that I am more sensitive to heat than anyone else I know and it doesn't feel "normal" to be the odd one out. Because of this, I am trying to find out if there is a possible nerve connection to do with the heat sensitivity? I know that its not caused by the menopause because I am now in my seventies and have had this problem since my forties. If anyone can shine a light on this I would appreciate it very much and any comments would be very welcome.

Thanks for reading this, Pinksweetpea

I have CMT and heat intolerance and also am sensitive to cold. Kind of no happy medium other than the 70 degree days are fine. Anything below zero is not good. My feet and calves are always cold to the touch no matter what the temperature is. Nothing warms them up except they are warm when I get out of bed in the A.M.

[Pinksweetpea]

Originally Posted by en bloc

HI and welcome,

Heat intolerance is a common element of autonomic neuropathy. Since you have other symptoms (urinary retention), then it IS likely to be related. There are also common aspects of autonomic neuropathy...like orthostatic hypotension (BP drops when you stand up -- making you dizzy/lightheaded), increased heart rate, and stomach fullness, bloating, nausea from gastroparesis. Do you have any of these other problems? Do you sweat easily in the heat...or not at all.

Either way, you should consider testing for autonomic functions. A QSART is a very detailed sweat test to see how you respond to heat. If you have other symptoms I mentioned above, there are more testing options.

Do they know the cause of your polyneuropathy?

en bloc
Thanks for your welcome and all the information. No I don't know what the cause of the polyneuropathy is, but the Neurologist mentioned that there had been an injury to L5 which has now resolved but left the nerve damage. She was not certain about this though. As for the bladder, I wasn't getting the message to urinate and it stretched over time causing "nerve damage" but again they didn't seem certain.

I do sweat a lot yes, my clothes are soaked sometimes during summer and also if I am in a hot room to the point that I feel clammy, faint and dizzy. At these times, I try to observe other peoples reaction to the heat and they don't seem to be feeling hot at all? The winter months I tolerate very well, I am dry and I don't seem to feel the cold like some people.

I can get night sweats at any time of year to the point where the bed is soaked. I have looked into this but no answers so far, they seem to come out of nowhere and are very unpredictable.

The light headedness on standing I can relate to, especially in the mornings when I go from a lying position to a standing one when I usually need to just give it a minute to go away. Also bloating but not the feeling of fullness. Does this sound like autonomic neuropathy to you or do I just feel the heat?

I would value your feedback and in the meanwhile I will look up the test you mentioned. and thanks again for your response.

[en bloc]

Since you have other symptoms in the same autonomic class (the urination and dizziness upon standing), you should consider a tilt table as well, for possible orthostatic hypotension or POTS.

Just a hint: In the morning, try sitting up in bed first (don't get up) and stay there for a few minutes. THEN, stand and see if it helps your BP to adjust to the position change a little better and reduce (might not eliminate it though) the lightheadedness upon standing.

You can check your own BP while you are laying in bed, and then check it standing. If your BP drops more then 20 mm hg systolic (first number), then try it again the next morning after using the hint and see if your numbers (and symptoms) improve. Also see if your heart rate is increasing significantly when you stand.

[Waddles]

Originally Posted by Pinksweetpea

I am still searching for answers and interested to know if any of our members who have autonomic neuropathy, have the symptom of heat intolerance? I have been diagnosed with large fibre polyneuropathy, but I think I may also have autonomic neuropathy?

For many years I suffered from urinary retention and three years ago had to have a permanent indwelling catheter because of this. There was never a diagnosis for the retention, but now I am wondering if it is caused by autonomic neuropathy, as I have read that this can affect the bladder as well as other organs.

I have noticed that I am more sensitive to heat than anyone else I know and it doesn't feel "normal" to be the odd one out. Because of this, I am trying to find out if there is a possible nerve connection to do with the heat sensitivity? I know that its not caused by the menopause because I am now in my seventies and have had this problem since my forties. If anyone can shine a light on this I would appreciate it very much and any comments would be very welcome.

Thanks for reading this, Pinksweetpea

I have small fiber neuropathy, but it manifests itself in burning of hands and feet when I exercise or get hot. The name for this manifestation is Erythromelalgia. You may want to look into it. Generally diagnosed by a sweat test. For me, I had a punch biopsy at my hip, knee, and ankle showing decreased nerves at my ankle. This is characteristic of small fiber (PN). Erythomelalgia hurts like the dickens but my symptoms are only when I get hot and can be relieved if I cool the area by soaking in cold water, or putting cold air on my feet. Wondering if you experience the same thing?

[Sallysblooms]

PinkSweetPea, has your doctor checked your A1c, B12, D levels? Has he or she looked into Autonomic Neuropathy and helping the nerves heal with cutting the carbs, supplements and the right foods? There are SO many problems with autonomic neuropathy, OI is really a bad one.


Before you sit and stand in the morning, you can eat something salty and drink water. I sleep with my head up on pillows, never flat.

[Kitt]

Welcome Waddles.

[Lewie]

I second the tilt table test. It will tell you if you have a dysautonomia. I just had it done and it sucked after the nitro.

[Pinksweetpea]

Its Pinksweetpea back again. Just come out of hibernation after a few days in bed with a nasty virus and just catching up with everything. For now, I want to say that I appreciate all the input you have given me, very helpful.

When I feel my old self again (and simple chores don't make me feel like I have just climbed Mt. Everest), I will look into all your ideas and let you know how I go. Meanwhile, thanks to you all.