Autonomic Dysfunction Explainer

#POTS has been in the headlines frequently due to it being a Long Covid problem. Much has been written about it – meaning docs should be knowledgeable (HA!). I’m thrilled to this #EDS comorbidity becoming a more researched and known condition.

Among other things, POTS now has its own ICD-10 code in the US. That’s major and driven by the increase in diagnosed POTS sufferers with Long Covid. Long time sufferers with POTS do appreciate the new attention and research.

I’m one of the weird ones though and don’t have POTS, thank heavens! I write about my issues in order to explain medical problems and I do have another form of autonomic dysfunction – autonomic neuropathy. Autonomic neuropathy is usually a consequence of diabetes which again I don’t have.

The most obvious symptom is sweat – or in my case, lack of it. If you don’t sweat (or sweat too much), your body can’t regulate your temperature. If it can’t, then you get sick from heat and get colder faster and worse than “normals”. As a southerner, I’ve been living inside for months of the year in heat. I stopped enjoying outdoor activities – like summer holidays – decades ago.

So we moved from Georgia to Virginia in 2008. The summers there were definitely easier. I realized that maybe a colder clime might be better? So we moved to Maine in 2017. Whew. What a relief!

I knew ahead of time that staying warm would be a challenge. I live on a heating pad and now have an electric throw as well. If I get too cold (possible no matter how “cold” it is), then I frequently have to take a warm bath to get my core heat back up to normal. But also I’m now having trouble with Raynaud’s, another common result of diabetes. Cold hands and feet have turned into interestingly colored appendages within minutes of exposure (inside gloves!). The pain can be a problem.

In addition to heat and cold intolerance, I also have pain intolerance – touch sensitivity. I promise you that feeling pain worse than other folks is a problem with docs who don’t believe you! I’ve said for years that I was the princess with that darn pea below all those mattresses – (I can still see that image from a old version of the fairy tale I was exposed to many decades ago). I’ve realized that touch is the source of my ear pain and recently the discomfort of wearing a cpap mask. (I reported that ENT who laughed at me when I told her about my ear pain.)

It can affect your gastrointestinal tract and that was a pre-ordained thing for me due to all my conditions that can drive that. I ended having my colon bypassed with an #ostomy some years ago and take meds for other gastro issues. I like to say my colon quit and I had it taken out but that’s not the full truth. The colon did quit but I had 18 months and 5 surgeries to get to a final “fix” for that.

Other issues with autonomic neuropathy depend on what nerves are affected. I’ve escaped a number of possible issues but the combination of that neuropathy with other conditions have highlighted some other milder neuropathy symptoms.

So I don’t have POTS per se nor diabetes. I just am me – an interesting mix of life-long problems which probably all stem from #EhlersDanlos. If you are interested, this CNN report and video is the best explainer ever for EDS.

If I use a Venn diagram with all my symptoms and diagnoses, it’s easy to see how all these problems have some of the same symptoms. That makes getting diagnoses much harder for a patient like me and I am a typical #EDS patient. But I’m not even completely diagnosed there – officially, it’s an unknown variant of #EDS. I may be really rare! Or the correct classes or genes of EDS have not yet been discovered. So it goes on. In the meantime I hope you’ve learned something about autonomic dysfunction today!


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