I started noticing small things that didn’t seem right with my body when I was a young child and just starting school. I had really hot feet and nothing seemed to relieve this symptom. It would turn on and off on its own. I could cool the surface skin by submerging them in ice water. They also would itch and burn when I had to stand in place but was at a loss finding any other pattern. The itching would sometimes start to engulf my entire body. I was squirming around because I was uncomfortable. Then as a teenager my back shoulder blade area started hurting, I had GERD, and a chronic pain in my right side. When I rode an elevator I noticed when I took my first couple of steps to exit it I would feel like my legs were going out from under me and I would be light headed. I didn’t know it at the time, but my body was having a hard time balancing out the change of movement on the outside with what was inside me was out of sync. I would later find out this was due to my bodies Homeostasis being off.
My body started getting roaming pains and also chronic pains that never changed. All types of different pains including: soreness, zapping, aches, throbbing, sharp, and more. False sensations of warm or cold as well as numbness also occur. These symptoms would be random and seemed disconnected. Sometimes I would get a pain for a brief moment and never have it happen again. Other times times a pain would show up and never seem to fully go away. This chaotic pattern of problems has stuck with me for life. Early on, It also made me wonder if it was real or imagined. My hot feet were actually my first sign of a neuropathy. No evidence unfortunately has often led to neglecting treatment and having it replaced with, “it’s all in your head” or dismissed as “idiopathic” meaning unknown. This frustrated me because it would often stop at that and the “WHY” was not looked into.
So I began looking for concrete visual evidence to validate what I was feeling. I saw five neurologists, numerous family physicians, vascular surgeons, urologists, gastroenterologists, and nutritionists, who couldn’t find the whole problem. I wanted a name for what I was experiencing. I had one source say I definitely had arthritis or small fiber neuropathy only to have another say I definitely did not. Spinal torsion, CIDP, high blood pressure, anxiety, and more diagnosis would come and go with each visit to a specialist. Massage therapy and physical therapy greatly increased my pain. I later found out why and wished the cause was found before the damaging treatment was administered. I was told to “do more exercise” after I already explained I exercised plenty but had to STOP because of the pain. I swam laps 3 times a week, lifted weights, jogged, did yoga, martial arts, walked, rode a bike and more. I knew it wasn’t due to inactivity and this line of treatments with “working it out” was making me worse. Exercise is a treatment I use today but now it’s within my limits that I set, not someone else.
Fighting with health Insurance and finances seemed to impact my health and make it worse. Was it, “all in my head”? When the traditional western medical system was failing me I began looking into other things. I started trying to play with different diets, chiropractors, and acupuncture. It was my acupuncturist who first told me about POTS. Building on this, I went to the Cleveland Clinic to see a doctor who specializes in dysautonomia and got diagnosed with POTS. With terms that I could use to define what was happening to me I also could find others with similar experiences. This helped with the isolating feeling of chronic illness. Having to go through all this made me want help others have an easier path finding information. Finding a doctor trained specifically in dysautonomia is important for getting an official diagnosis, medications, and testing. The best weapon against much of this fight however, is educating myself about it so I could help create my own treatment plan and get answers to my “unknowns”. No one even with the best intentions will ever understand like I do living it. The minor and major fluctuations that I constantly am scanning my body for from the moment I wake up and considering the dreams I have related to pain, even after I fall asleep. Everyone with dysautonomia is similar to a certain point then we all have unique experiences that are only a part of our lives.