Old thread, but YES! I have this same exact problem and have been searching for answers just about everywhere you can imagine. Not even Mayo Clinic could figure it out for me; they blamed it on soft skin from my Ehlers-Danlos, but I don't necessarily believe that given how the phenomenon doesn't always occur. They said I've probably always had this but just didn't notice it, and I know for a fact that isn't the case. Now, it's getting better after eight or so months, but definitely still there!
Here's what I do know about my own personal situation, in case it helps someone else just as bewildered as I was:
- My sympathetic nervous system is indeed overactive - I've had some of the most experienced neurologists in Chicago clinically observe this, although it's been difficult to actually pick up on tests
- I've had multiple skin biopsies to check for small fiber neuropathy - NEGATIVE; I know small fiber neuropathy can be patchy, but the biopsies were indeed taken where I experience neurological symptoms
- I've had multiple QSARTs (a special type of sweat test) to check for autonomic small fiber neuropathy - NEGATIVE
- I've had a tilt table test to check for autonomic dysfunction and autonomic small fiber neuropathy - NEGATIVE; I do have documented orthostatic intolerance, but no documentation of autonomic dysfunction or autonomic small fiber neuropathy (that said, my heart rate does occasionally increase by 30+ BPM upon standing, but that's not a constant occurrence at all, and this test didn't pick up on it that particular day, so I wasn't diagnosed with POTS. This isn't uncommon in Ehlers-Danlos patients. Either way, it's clear that my sympathetic nervous system is very hyperactive)
- I've had multiple EMGs to check for for large fiber neuropathy - NEGATIVE
- I've had a brain MRI to check for MS and brain-related issues - NEGATIVE
- I've had a Doppler ultrasound to check for circulatory problems - NEGATIVE
- I've had dermatographia that is not raised observed, so I was diagnosed as having mast cell issues, although it is my understanding that autonomic nervous system issues can also contribute to similar issues
I also have issues with excessive sweating, especially in my hands and feet, as well as when a specific part of my body is touching an object (example = if I'm sitting on a chair, my rear will start to sweat; if I rest my forearm on a tabletop, sweating will begin). My distal sweating is one of the major reasons I was not diagnosed as having neuropathy, as truly damaged nerves will not sweat. Compensatory sweating can occur, but I don't seem to have a problem with sweating anywhere on my body, and it's rare for compensatory sweating to occur in the distal limbs anyway.
My feet will turn very purple and yellow upon standing on solid surfaces without socks or shoes. My hands used to become EXTREMELY mottled when walking around, but it's gotten way better. These are all signs of autonomic dysfunction/sympathetic overdrive, which is very common in the type of Ehlers-Danlos I have (hypermobility type / type III). Could this be blood pooling? I'm not convinced - I strongly believe this is a result of vasoconstriction, not too much vasodilation, as it's very similar to the Raynaud's I experience in cold water. An autonomic specialist told me the same thing. He also said the fact that I sometimes cannot detect temperature in my hands and feet is not due to nerve damage, but rather a Raynaud's-type process. My feet always turned SLIGHTLY purple and yellow (even as a young child), but it didn't become severe until this year after going through a very stressful time in my life, binge drinking alcohol once a week, and vaping high levels of non-nicotine vape juice for a week and a half.
Additionally, I noticed that my skin in general is MUCH more prone to dents. For instance, while it's normal for my watch to leave an impression around my wrist, it's literally 10 times deeper and redder than before. And it may or may not hurt me! There are times when it's painful for me to sit down on solid benches, grip pencils, rest my chin on my hands, etc., but that uncomfortableness is not always present.
Wrinkled fingertips became a common occurrence for me at the same exact time I began I experiencing the exaggerated symptoms described above. Interesting, right? Especially given the day-to-day inconsistency, and how each of these can be traced back to the sympathetic nervous system. I'm convinced that sympathetically mediated vasoconstriction is playing a key role here.
Below is an article that may be of interest to everyone who is affected by similar issues. Water-induced fingertip wrinkling been confirmed to be controlled by the sympathetic nervous system. Wrinkled fingertips can sometimes occur in Raynaud's cases. I've spoken to other people whose doctors say this all boils down to Raynaud's. Personally, I don't think everyone experiencing this phenomenon has Raynaud's, but I suspect we all do have overactive sympathetic nervous systems, which can cause conditions such as Raynaud's. Based on that, I think finger wrinkling can be very similar to - and even linked, for certain individuals - Raynaud's.
I should also note that my fingertips were wrinkling within just a minute or two of taking a shower. However, as I've started sweating less thanks to Cymbalta calming my nervous system down, the wrinkling now occurs later for me (it still happens, but simply takes more time). I've noticed my fingertips wrinkling while cold or stressed out, and in addition to cold-induced, Raynaud's can be stress-induced. Could this all just be from a faulty - but harmless - sympathetic nervous system that needs some calming down?
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0084949
I do indeed have that and I also have no idea why. Similarly, increasing my fluid intake along with my salt intake (to hold the fluid) seems to make no difference. It comes and goes in all seasons of the year, but in general seems to be worse when my symptoms in general are worse, but there are some exceptions. Stumped too.
