I do have Ehlers-Danlos; I've read that over 83% of us have autonomic nervous system dysfunction. In the medical field, it's referred to as a "genetic trifecta." I believe that because I'm genetically predisposed to autonomic dysfunction, a period of extreme emotional stress in my life led to my body getting stuck in one of the nastiest fight-or-flight modes ever seen (also referred to as sympathetic nervous system overdrive).
I've experienced:
- Burning skin
- Nerve pain (allodynia) - so severe that I could barely hold my phone, type on a keyboard, grip a doorknob, etc.
- Altered sense of touch in my fingers and toes - not true numbness, but similar in the sense that the senstation touching an object feels different than before
- Tingling (hands, arms, feet, legs, head, lips, etc.)
- Extremely heavy and stiff limbs due to blood pooling and tension
- Excessive sweating, especially - but definitely not limited to - my hands, feet, and armpits
- Increased skin impressions/dents whenever any object (even light wrapping paper) gently touched my skin - skin impressions/dents are absolutely normal to a certain extent, but it was occurring much deeper and faster than ever before. Additionally, the skin impressions were sometimes very painful, such as when I'd sit on hard benches, rest my chin on my hand, grip pencils, cross my legs, etc.
- Fingertips that wrinkled almost immediately in the shower, as well as upon gripping objects (even when they were not even slightly wet or cold)
- Headaches
- Dizziness
- Nausea and vomiting
- Dry eyes and mouth
- Blurry vision
- Red feet with bulging veins when walking
- Occasional blood pooling and overly dilated blood vessels in hands when walking
- Chronic fatigue/exhaustion
- Increased need to use the bathroom
- Increased heart rate, especially upon standing - this was picked up on a tilt table test, but was not considered severe enough to diagnose postural orthostatic tachycardia syndrome (POTS) that particular day. My heart rate does occasionally increase by 30+ BPM upon standing thanks to my Ehlers-Danlos, but this started occurring daily and on a much more severe level than ever before
- Increased Raynaud's-like symptoms and vasospasms where standing for even a few seconds would result in deeply yellow and purple feet from vasoconstriction, and my digits would become numb and red in the cold. Again, I experienced this to a much lesser extent as a child from Ehlers-Danlos, but I would say it increased by 85% and became seriously painful
- Mottled hands when walking, known as livedo reticularis. This is also common in Ehlers-Danlos, but later became increased for me
- Cold hands and feet - again, I had this as a child from Ehlers-Danlos, but it was worsened by over 50%
- Multiple chemical sensitivity - I had to stay away from alcohol, vaping and smoking anything, drinking sugary coffee with high amounts of caffeine, etc., and it was important for me to make peace with that
- Muscle spasms/twitching
- Facial flushing
- Dermatographia - commonly associated with allergies, but can also be from an overactive autonomic nervous system
... and so many more I can't even remember at this point. My list of symptoms was ridiculously long - one hospital listed 30+ in my patient profile.
Note that some of these symptoms (e.g., excessive sweating, fatigue, facial flushing, vomiting, blurry vision, dry eyes and mouth, increased heart rate and POTS-like symptoms, vasospasms, fingertip wrinkling, etc.) may not sound neuropathic to someone unfamiliar with autonomic neuropathy, which occurs due to damage of the small nerve fibers that control and/or influence these types of autonomic bodily functions. I don't have CRPS/RSD, but many of these symptoms closely mirror it given the role of the sympathetic nervous system.
I've also had to deal with some pretty intense nocebo situations. I saw a handful of neurologists, all of whom said there was no way I had nerve damage (although one did put down "toxic neuropathy" in my online patient profile, as I had begun to complain of neuropathic symptoms after a weekend of heavy drinking and a week and a half of vaping propylene gylcol- and vegetable glycerin-based vape oil; that particular neurologist never asked me about my individual stressors, and none of us knew I had Ehlers-Danlos yet. What he actually meant to indicate in the patient portal was that I had nerve pain after ingesting toxins, but he didn't truly believe I had nerve damage. That said, it still terrified me, and I didn't understand his intention at the time). One of the best neurologists in the country, who performs extensive research across the globe and has decades of experience, said I simply had an overactive sympathetic nervous system from emotional trauma and referred me to a pain psychologist who was supposed to teach me biofeedback to calm my nerves. The neurologist had written a study on sympathetic overdrive with the pain psychologist and thought very highly of him.
However, the pain psychologist messed with my head by saying, "Why do these doctors not believe that something is really wrong here? You've indicated having a sensitive nervous system since your childhood. You know, half of what doctors learn in medical school is later proven to be incorrect - medical students are often told they are the ones who are going to make a big breakthrough in medicine or prove the information in their textbooks wrong. What I think is that you've always had poor circulation, and when you drank heavily that one weekend, the poor circulation and alcohol destroyed your nerves." (EVERY single physician I've ever repeated that last sentence to says it's basically IMPOSSIBLE for that to randomly happen to a young person who used to be able to tolerate alcohol and has no vitamin deficiencies or extensive history of alcoholism. Also, if my circulation had truly been that poor, the alcohol wouldn't even have made its way to the nerves throughout my body. Not to mention the fact that symptoms like excessive distal sweating that disprove neuropathy, and the way my symptoms immediately occurred throughout my body was not characteristic of alcoholic neuropathy. Yup, the pain psychologist truly is an idiot.) I was having trouble believing I didn't have crippling neuropathy because the other neurologists didn't even want to perform certain "gold standard" tests on me (e.g., skin biopsy, etc.) - they just said there was no way I had neuropathy.
Well, my doctors performed the "gold standard" small fiber neuropathy tests (I had already passed some EMGs, but those really only look at large nerve fibers)... and everything was negative, just as they had predicted. My other neurologist was not happy when I told him about the pain psychologist. It was such a mess of a situation, but that's why I'm happy I didn't give up on life. Hang in there!
Also, to confirm, I've had the following large and small fiber neuropathy testing (includes testing for autonomic neuropathy): multiple skin biopsies, multiple QSART sweat tests, multiple EMGs, multiple neurological exams checking my sensory abilities, a tilt table test, extensive blood panels to check for toxins as well as autoimmune diseases that frequently cause nerve damage, etc. I've also had a brain MRI and a Doppler vascular study to rule out some other problems. All negative!
