I have a very lengthy story so I’m going to attempt to abbreviate it here. Basically since age three I’ve had leg pains and chest pains, with doctors never understanding what was wrong with me. My entire life has been always been a mystery for doctors, every test, and procedure are always negative or inconclusive. Looking back through my life I can see the times when dysautonomia / hEDS affected my life.
In 1994 my condition took a turn when one day at work I had what we thought was an allergic reaction. After eating lunch I had severe abdominal cramps and ran to the bathroom where I had explosive diarrhea and vomiting at the same time. I also started sweating profusely and felt like I was going to pass out. They rushed me to the emergency room where the doctors informed me I had an allergic reaction and I needed to see an allergist. This is where my very long journey to diagnosis started. Throughout the years these “attacks” got worse and more and more frequent, including totally passing out, hand and face paralysis, and hives. The allergist said I wasn’t allergic to anything, the gastroenterologist said I had IBS, my doctor thought I had a bipolar disorder. After that first attack I decided to find my birth parents because I was adopted at a month old. This really didn’t revel much at the time. Looking back now I realize it probably wasn’t the best time to be asking medical information because they were all wrapped up in just meeting me. I developed a relationship with my birth mom but I didn’t with my birth dad. So years went by and the just lived with these attacks. I had found that if I took a Benadryl or two or three I could stop the attack during the cramping phase.
Then came the summer of 2017. I had severe abdominal pain and went to see my doctor again for what seemed like the hundredth time. He thinks it’s diverticulitis Again, and the tests are inconclusive Again. After 7 days of amoxicillin I had a CT scan, inconclusive Again. Now I’m prescribed flagyl and cipro and I get sicker. Antibiotics perhaps, I think. So my doctor sends me to see a surgeon. The surgeon thinks I might need surgery for my sigmoid colon but I’m dehydrated and in pain so he admits me to the hospital. They put me on IV antibiotics thinking I needed stronger doses of cipro and flagyl. I fight with the doctors as I think the antibiotics are killing me. I’m told to “hang in there“ and I’m also having pain at the IV site. This goes on for five days and I feel worse than when I went in. So I had a bowel movement, I ate some jello and they sent me home with more antibiotics. After 2 more days I convince the surgeon that I can no longer tolerate the the antibiotics and ask to get me off it. He does. I’m still in severe pain so I have a barium enema, this test is inconclusive. It’s now time to go in, so I have a colonoscopy. The surgeon thinks it’s colitis but doesn’t do a biopsy. I also develop supposed cellulitis. I’m prescribed APRISO, a drug for colitis. The pain is still unbearable so the surgeon orders a small bowel series and prescribed amlodapine. A couple of days later I get a call from the hospital and they inform me that my surgeon is no longer with the hospital and I have a new surgeon that I have to see next week. I was given no reason for my surgeons departure and they wouldn’t tell me where he went. So,I met with the new surgeon and he schedules me to see a gastroenterologist and prescribes me 10 more days of antibiotics!! After 3 days of antibiotics I started to get tingly lips, more severe cramps, many sore spots, swallowing issues, and acid reflux. I call the doctor and they tell me to continue the antibiotics unless things get worse. After two more weeks of pain my surgeon orders another colonoscopy. I have the colonoscopy 2 weeks later. A day before my 51st birthday, on October 9th, I see the gastroenterologist and he tells me it’s not colitis or Crohns and I need to discuss a colectomy with the surgeon. ( I thought that’s why I was seeing the gastroenterologist!?!?) The gastroenterologist orders a hida scan and sonogram for my gallbladder. Another painful week passes and I see the surgeon again, he says the gallbladder has to come out and cancels the HIDA scan. He then told me my sigmoid colon should come out as well. My surgeon suggests taking care of the things we “know of” first, and then tackle the other problems. (Urinary problems, joint pains, severe anxiety, the sores, and more, we never discussed my attacks and no one ever looked at my journal and diary, even thought brought them to every appointment.) The surgery is scheduled and I have to wait another painful month. I’m in pain every day but I’m not dying so they tell me I can wait. While waiting, I go to another city to see another gastroenterologist. This did not go well, he doesn’t think I should get the surgery but thinks it’s just IBS and prescribes me celexa. Of course this just confused me more and the medication made me sick. I meet with my primary care doctor one more time and he convinces me to go through with the surgery, his words, “we’ve been dealing with this for quite some time, it’s seems like the best option.” I op for surgery as I can no longer take the pain and I trust my doctors and surgeons opinions. Surgery goes well, about 1 foot of decending colon removed, sigmoid colon, gallbladder, and adhesions from previous appendectomy (1994). The surgeons reassure me that the surgery was definitely necessary due the condition of my damaged colon. (Although the 2nd gastroenterologist said my images showed a fairly healthy colon, some diverticula, but not bad) I opt not to go home with oxycodone for pain and instead use my medical marijuana license to get 100MG THC capsules. This goes well and I taper myself down to a mantanance dose of 40mg in the morning and 40mg at night. I go back to work (I’m a teacher at a community college and I had to take sick leave for the entire Fall semester)and make it to February break. At this point I’m feeling pretty well and life seems to be getting back to “my” normal. So on Valentines Day my fiancé and I get married at city hall, just the two of us.(No stress) (Now I have to say, if it hadn’t been for the love and support of my beautiful wife, I don’t think I could have done it. She has been fantastic, as she is the most positive supportive person I have ever known, she keeps my stress levels low, as that’s one of my largest triggers. ) My wife and I go to Jamaica for our honeymoon, and of course I’m stressed about traveling, food, and not having my THC supplements. But reassured by the best wife in the world, I reservedly go. While in Jamaica I smoke ganja from morning till dusk, drink beer daily, lay in the sun everyday, swim, eat anything I want, and have absolutely no STRESS. To my astonishment I did not have any attacks or even an indication of any problems. I have to say that again, in 30 years I’ve never felt so well. When we came home I continued with the semester, and decided not to continue taking the THC supplements as I was feeling great and thinking “I’ve been cured by the surgery “ and vacation proved it. I decided not to push the boundaries with food and alcohol now that vacation was over. So, I continued to follow my nutritionists 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 he started myself on the MCAS protocol, blocking the h1,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-dependant, 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 diagnosis’s.
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 just because of EDS. Now that I know that my birth mom and birth dad have multiple conditions (mother – Sjögren’s, Graves diseases, 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 be upright for about 15 minutes before getting so nauseous I can take it no longer and have to sit back down. Everyday I try to be active and do something like vacuum, put away the dishes, or take out the garbage and everyday my body reminds me very abruptly that I can’t, but I keep trying. Actually, reclining is my preferred position and the only position where my blood pressure is normal. I watch a lot of tv and research and read as much as I can before getting my daily headache and other maladies. I could go on for another 100 pages about that, but I won’t bother you with all those details.
The only time I leave the house is for doctors appointments because my blood pressure gets so high it’s a bit scary. It’s a very strange condition because the blood pressure medications don’t seem to do much. My cardiologist keeps trying new things but she’s been honest with me telling me its going to be a difficult road because I’m “a complicated case”. Most likely my Small Fiber Neuropathy is causing autonomic dysfunction which is probably the culprit but we’re still trying to figure out what is causing the SFN. One doctor thinks it’s because of my EDS or Mast Cells but I’m not satisfied with those answers. My neurologist thinks it’s an autoimmune disease that we haven’t found yet. I have more doctors appointments coming up. I feel like we are slowly crossing things off a list but my conditions continue to grow.