Of all the secondary conditions I have which are caused by EDS, the one that causes me the most grief is Neuropathy. There are various different neuropathies, many of which effect me in varying degrees. But it’s Peripheral Neuropathy, and the pain I get from it, that is the most debilitating. This post, from one of my favourite EDS websites, goes into the condition in a lot of detail. It’s common in EDS as the weak connective tissue doesn’t support the nerves as much as it should, so they can get damaged.
The very first inkling I had that something may be going wrong with my peripheral nerves was a weird tingling in the soles of my feet. Like pins and needles, but milder. This alternated with intense itching. And odd periods of numbness. After about two years, I developed intense pain in my feet.
The pain is constant, but varies in intensity from very annoying to excruciating. It’s there from when I wake up, to when I go to sleep, but I notice it more at night. Probably because I’m less distracted. It’s also worse if I have to stand for more than ten minutes.
I’m not officially diagnosed with short-fibre peripheral neuropathy, but I know it’s what’s causing the symptoms. When my fingers and palms developed the familiar tingling, (which so far hasn’t progressed to pain) I decided to see a neurologist. The horrendous treatment I experienced has put me off pursuing an official diagnosis.
Initially he seemed caring enough. He nodded and said he ‘knew all about EDS’. That was the first red flag. He then proceeded to test me for long-fibre peripheral neuropathy. Which tested as normal, seeing it doesn’t test the short fibres. I was too frazzled from the electric shocks used to test my nerves to suggest the proper test, which is a skin biopsy. The next red flag was when I (stupidly) mentioned my fibromyalgia diagnosis and suddenly his whole attitude towards me changed. He stopped listening and started suggesting all sorts of things that are not suitable. He wanted me to undergo an invasive procedure that’s contra-indicated for EDS, plus he wanted to hook me up for steroid infusions, which are also not recommended for EDS. I overheard his secretary booking the same procedures for every other patient who was there at the same time as me. I suspect he has a ‘one-size-fits-all’ policy.
His secretary then phoned me a few days later to book me in for the procedure. At first she gave me a very unsuitable time. I phoned back and asked her to change it and she said she would. I then got a phonecall from the hospital telling me the original, unsuitable, time had been confirmed. I immediately cancelled. I had also emailed (since talking to the secretary on the phone was too stressful) asking could I please have a skin biopsy. That was last year. I’m still waiting for a reply! I visited my GP in the meantime, and she told me he’d diagnosed me with Chronic Fatigue Syndrome without bothering to tell me! This was dispite me telling him what a huge part of EDS fatigue can be. Needless to say, I never went back to him.
My GP prescribed me amitryptaline for the pain. Which worked ok for a while. Then one day it just stopped working, and increasing the dose made no difference. Right now, I use capsaicin cream on it from time to time. It’s a cream made from the active ingredient in chilli peppers. It does seem to work. It is supposed to burn a lot on application. But, an indication of how badly damaged my nerves are maybe, I don’t feel a thing when I apply it. Except, despite washing with plenty of soap and water, if I touch my lips or eyes it burns a lot! That, plus needing to apply four times a day and it taking two weeks to start working, is why I don’t use it as often as I should.
So, if you have ‘idiopathic’ neuropathy, that is neuropathy not caused by diabetes or other obvious cause, you may want to see if EDS may be the root cause of it.
[image of a yellow background, with the words ‘N is for Neuropathy’ in black.]