I have a lengthy story, so I’ll try to summarize it here. Since the age of three, I’ve experienced leg and chest pains, but doctors were never able to diagnose the issue. Throughout my life, my medical condition has remained a mystery to doctors, with every test and procedure yielding negative or inconclusive results. Looking back on my life, I can now recognize the impact of dysautonomia/hEDS on my health.
In 1994, my health condition took a turn when I experienced what was initially believed to be an allergic reaction at work. Following lunch, I suffered from severe abdominal cramps and rushed to the bathroom where I had simultaneous explosive diarrhea and vomiting. Additionally, I started sweating profusely and felt like I was going to pass out. I was immediately taken to the emergency room where the doctors informed me that I had an allergic reaction and needed to see an allergist, marking the beginning of my lengthy journey to diagnosis.
Over the years, these “attacks” became more frequent and severe, including symptoms like passing out, hand and face paralysis, and hives. Despite seeking medical attention, the allergist concluded that I wasn’t allergic to anything, the gastroenterologist diagnosed me with IBS, and my doctor thought I had bipolar disorder.
In an attempt to gather more information about my medical history, I decided to track down my birth parents since I was adopted at one month old. However, this did not reveal much information initially as my birth parents were preoccupied with just meeting me. While I was able to establish a relationship with my birth mother, I was not able to do the same with my birth father.
As the years went by, I continued to experience these attacks, and I found that taking Benadryl helped to alleviate the symptoms during the cramping phase
Then came the summer of 2017, when I experienced severe abdominal pain and visited my doctor yet again. He thought it was diverticulitis, but the tests were inconclusive as before. I was put on amoxicillin for a week, and a CT scan was done, but the results were still inconclusive. Next, I was prescribed flagyl and cipro, but they made me even sicker. My doctor then referred me to a surgeon who suggested that I might need surgery for my sigmoid colon, but since I was dehydrated and in pain, he admitted me to the hospital. They started me on IV antibiotics, but I began to feel worse and had pain at the IV site. I protested against the use of antibiotics, but the doctors urged me to “hang in there.” This continued for five days, and I felt worse than ever. Finally, I had a bowel movement and ate some jello, and they discharged me with more antibiotics.
After two more days, I convinced the surgeon that I couldn’t take the antibiotics anymore, so he stopped them. However, I was still in severe pain, so the surgeon ordered a barium enema, which didn’t yield any conclusive results. It was time to go in, so I had a colonoscopy. The surgeon believed it was colitis, but he didn’t do a biopsy. Additionally, I developed what was believed to be cellulitis and was prescribed APRISO, a drug for colitis. The pain persisted, and the surgeon ordered a small bowel series and prescribed amlodipine. A few days later, the hospital informed me that my surgeon had left, and I was scheduled to see a new surgeon the following week. The new surgeon scheduled me to see a gastroenterologist and prescribed me ten more days of antibiotics.
However, after three days of antibiotics, I began to experience tingling in my lips, more severe cramps, sore spots, swallowing issues, and acid reflux. I called the doctor, and they told me to continue the antibiotics unless things got worse. After two more weeks of pain, my surgeon ordered another colonoscopy, which I had two weeks later. On October 9th, the day before my 51st birthday, I met with the gastroenterologist, who informed me that it wasn’t colitis or Crohn’s disease, and I needed to discuss a colectomy with the surgeon. I was confused because I thought that was the reason for seeing the gastroenterologist. The gastroenterologist ordered a hida scan and sonogram for my gallbladder, which I had to endure after another painful week. I saw the surgeon again, and he concluded that my gallbladder had to be removed and suggested that my sigmoid colon should also be removed. He proposed that we take care of the known issues first, such as my urinary problems, joint pains, and severe anxiety, and tackle the other issues later. Even though I had been bringing my journal and diary to every appointment, nobody had looked at them, and we never discussed my attacks.
The surgery was scheduled, but I had to wait for another painful month. Although I was in pain every day, I was not dying, so I was told I could wait. During this time, I went to another city to see another gastroenterologist, who didn’t think I needed surgery but believed it was just irritable bowel syndrome (IBS) and prescribed me Celexa. This only added to my confusion, and the medication made me feel sick. I met with my primary care doctor once more, and he convinced me to go through with the surgery, saying, “We’ve been dealing with this for quite some time, and it seems like the best option.”
I opted for surgery because I could no longer tolerate the pain, and I trusted my doctors and surgeon’s opinions. The surgery went well, and about one foot of my descending colon was removed, along with my sigmoid colon, gallbladder, and adhesions from a previous appendectomy I had in 1994. The surgeons reassured me that the surgery was necessary due to the condition of my damaged colon, despite the second gastroenterologist’s opinion that my colon looked fairly healthy with some diverticula but not bad.
Instead of taking oxycodone for pain, I decided to use my medical marijuana license to obtain 100mg THC capsules, and it worked well for me. Over time, I tapered myself down to a maintenance dose of 40mg in the morning and 40mg at night. I returned to work as a teacher at a community college and made it to February break, feeling pretty well and starting to get back to my normal routine.
On Valentine’s Day, my fiancé and I got married at City Hall with just the two of us, and it was a stress-free occasion. I have to say that without my beautiful wife’s love and support, I don’t think I could have done it. She has been fantastic, and her positivity and support have kept my stress levels low, which is one of my biggest triggers.
For our honeymoon, my wife and I went to Jamaica, and I was initially stressed about traveling, food, and not having my THC supplements. However, my wife reassured me, and I decided to go. To my surprise, I did not have any attacks or even an indication of any problems while in Jamaica. I have to emphasize that in 30 years, I had never felt so well. I smoked ganja from morning till dusk, drank beer daily, lay in the sun every day, swam, ate anything I wanted, and had absolutely no stress.
When we returned home, I continued with the semester and decided not to continue taking the THC supplements since I was feeling great and believed that I had been cured by the surgery. I also decided not to push the boundaries with food and alcohol now that vacation was over. I followed my nutritionist’s advice and stuck to a low histamine, low FODMAP diet.
I felt pretty good until mid-April when I started getting cramps again. This was very distressing, so I started researching and found something called mastocytosis or Mast Cell Activation Syndrome. I brought information to my doctor, and he said, “I think you found it, I think that’s what you have,” so he started me on cromolyn and the MCAS protocol, blocking the h1 and h2 receptors.
I wanted to know what I had for sure and managed to get an appointment at Brigham and Women’s with Dr. Castells. Dr. Castells ran tests and ruled out mastocytosis but said I do have MCAS. She also suspected I had some form of dysautonomia and possibly EDS. I made appointments but had to wait until the next summer to see the neurologist, gastroenterologist, and geneticist. I managed to teach again until May when I started getting really ill again.
The summer of 2019 came, and I got a diagnosis from the neurologist of “small fiber neuropathy, mixed length-dependent, affecting sensory and autonomic fibers, biopsy-proven,” “supine and orthostatic hypertension,” “autonomic overactivity,” and “paroxysmal Dysautonomia.” I also received a diagnosis from the geneticist of EDS and POTS. The gastroenterologist agreed with the above diagnoses.
I’m now trying to figure out the underlying cause of my SFN. I suspect it’s hereditary, but the neurologist thought it was either an autoimmune condition we haven’t found or simply because of EDS. Now that I know that my birth mom and birth dad have multiple conditions (mother – Sjögren’s, Graves disease, rheumatoid, and cutaneous lupus, father – hEDS (undiagnosed but obvious), hearing loss in both ears, and prostate cancer), I’m suspicious that I have an autoimmune condition, but the testing is inconclusive, of course.
Lately, I can only remain upright for about 15 minutes before feeling very nauseous and having to sit back down. Despite this, I try to be active every day by doing things like vacuuming, putting away dishes, or taking out the garbage, but my body reminds me abruptly that I can’t handle it for very long. Reclining is my preferred position because it’s the only position where my blood pressure is normal. I spend a lot of time watching TV and doing research and reading until I develop my daily headache and other symptoms.
The only time I leave the house is for doctor’s appointments because my blood pressure gets dangerously high. My blood pressure medications don’t seem to help much, and my cardiologist has warned me that my case is complicated. Most likely, my Small Fiber Neuropathy is causing autonomic dysfunction, which is the likely culprit, but we’re still trying to figure out what’s causing the SFN. One doctor thinks it may be due to my EDS or Mast Cells, but I’m not satisfied with those answers. My neurologist believes it could be an autoimmune disease that we haven’t identified yet. I have more doctor’s appointments coming up, and while we’re slowly crossing things off the list, my conditions continue to grow.
In 2020, just before the COVID-19 pandemic hit, I received a new diagnosis of fibromyalgia and degenerative disc disease. The diagnosis of fibromyalgia was from my third rheumatologist who believed it was an additional condition due to the “hot spots” that people with fibromyalgia commonly experience. This diagnosis didn’t really change anything except for giving me one more diagnosis to add to my list, although it did provide some explanation for the random pains I experience. However, I was more concerned about the degenerative disc disease because I had been experiencing severe neck pain periodically. The MRI showed a progression of my osteophytes in my two pain spots – my lower back and the base of my neck. The report stated the following:
“IMPRESSION: 8/17/2020 Degenerative disc disease. There has been progression since 2009. Most significantly, right-sided C5-6 neural foramina/lateral disc space level. Almost certainly some component of nerve root compression. Some similar but not as prominent findings on the left side C5-6 and also the left foramina at the C6-7 levels.”
This was troubling to me because I could clearly see the compression on the MRI of my neck. I was told that it wasn’t “severe” enough yet to warrant any intervention, and I actually believe that the small statement “Almost certainly some component of nerve root compression” was missed by my doctor. Upon further inspection of the report, I found this statement within the document, which was not included in the summary: “C5-C6: There is a broad-based dorsal osteophyte. There is a right lateral component of this osteophyte which clearly impacts on the right-sided foramina. Some component of calcified extruded disc into the right-sided foramina/anterior spinal canal could be present. Some contact with the exiting right-sided nerve root is suspected. Left-sided foramina slightly narrowed also. No actual bony canal stenosis however.” After seeing this, I made note of it and made another appointment to see my doctor. However, the COVID-19 pandemic struck and everything was put on hold. The appointment was cancelled and I completely forgot about the neck problem because I was focused on not getting sick with COVID-19. My wife and I did get through COVID-19, and after more than a year, I finally got back to see my doctor. I had completely forgotten about my neck mainly because I hadn’t experienced a “lock-up” episode since before the pandemic, and other health issues took precedence, such as the swelling in my fingers and toes. This prompted more visits to the doctor, ultimately concluding that I most likely have rheumatoid arthritis, and I was prescribed Hydroxychloroquine (Plaquenil). The prescribed dosage was a bit too high and it made me even more dizzy and nauseous, so I cut the dosage in half and that seems to have worked for me so far.
Despite all of these challenges, I refuse to give up on my health journey. I am determined to find answers and improve my quality of life, no matter how long it takes. I have made changes to my diet and added low-impact exercise routines to my daily life. I have also started practicing mindfulness and gratitude to reduce stress, which can worsen my symptoms.
I have also found inspiration and support from others who are on their own health journeys. In online groups and communities, I have met many people who are dealing with similar challenges. Together, we share tips, advice, and emotional support. It’s comforting to know that I’m not alone in this.
This journey has taught me a lot about resilience and the importance of self-care. I’ve learned that it’s okay to ask for help, even if it’s just for small things like picking up groceries. I’ve also learned to listen to my body’s signals and adjust my plans accordingly. While my health journey hasn’t been easy, it has taught me to appreciate the little things and find joy in life’s simple pleasures.
As I continue on this journey, I am hopeful that I will eventually find the answers I need to improve my health. Until then, I am grateful for the progress I have made and the support I have received from loved ones and strangers alike. Health is a journey, and I am determined to make the most of mine.
Riven Waters 