Understanding EDS symptoms

Gen at 4 months

The light hurts – my then squinting baby with EDS

Yesterday I came across an interesting page on dysautonomia (failure of the autonomic nervous system) and some of its symptoms. For some reason, it seems as though it is not well understood by a number of physicians; at least the ones I’ve come across over the years.

The autonomic nervous system is “not subject to voluntary control” and “regulates organ functions”, etc. Here’s a reliable source for a more in dept understanding of what it is.

When my daughter was just a tiny baby – less than 6 months of age – I remember thinking it was odd that she couldn’t stand the light. Even when out in the shade, she used to squint her eyes and her body language was so fierce it was as though she was in pain.

Although dated, I like the way this article links pupil dilatation to the integrity of the ANS.  It specifically tells us that “The pupils are exclusively dependent upon autonomic nerves for their size and reactions and their assessment can give us information about the integrity of the Automatic nervous system.”

Recently, I have been worried about my daughter’s digestive issues which appear to get worse by the week. Going back to the page on dysautonomia, there is a clear explanation to gastrointestinal problems in patients who are affected by dysautonomia (not unheard of in EDS patients)

“… digestion is controlled by the autonomic nervous system. When the ANS malfunctions, the “victim” commonly develops gastrointestinal problems. Symptoms include nausea, bloating, vomiting, severe constipation, and abdominal pain.”

If there is indeed a clear link between the ANS and dilated pupils, then perhaps we should consider the real issue of IBS in these patients.

I was inspired to write this post after reading Final Tricks‘ post on IBS.

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4 thoughts on “Understanding EDS symptoms

    • My mom is legally blind and finds the sun very disturbing. I don’t know what it’s like for people with serious eyesight problems. I wouldn’t however be surprised if dysautonomia was associated with a variety of other conditions. In some cases (at least) it’s genetic and inherited in a autosomal recessive way (both parents carry the gene).

  1. I belong to a few “support groups” on Facebook and it seems that with both POTS (dysautonomia) and EDS, there are typically several comorbidities. Me… My eyes don’t adjust in the dark anymore, so I need glasses and have to avoid driving at night. I have also had GI problems my whole life. I have had several kidney stones 7 times, have non-celiac gluten sensitivity, and had my gallbladder out at 22. I’ve see there is some (though limited) research being done on the relationship between dysautonomia, specifically, and GI issues/disorders. I’m glad to see that more and more people are noticing the relationship. Hopefully it can become easier to deal with these conditions in one “lump treatment” as a whole in the future, instead of addressing them one by one as they appear, like I (and most other “zebras”, as I call us) have had to.

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