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Zebra Adventures (managing my EDS - new post series)

This year marks a new start in handling my health. I’ve finally started to get a team of doctors together to help my manage my Ehlers-Danlos syndrome after 2 years of not getting much help after diagnosis and not getting proper medical attention when my mom first started taking me in for my symptoms at age 11. I’ve decided to post once or twice a month to document how I’m progressing and maybe it will help me see actual progress and help others in similar situations.

Context for the title: the EDS community refers to themselves as zebras because doctors are taught to look for the most obvious cause of an ailment, so if they hear hoof-beats it must be a horse. Except with rare or underdiagnosed conditions like EDS, sometimes the most obvious answer is wrong and you find a zebra when you expected a horse. Hence the title. After over 16 years of seeing doctors and not being listened to, I finally got my diagnosis of hypermobile EDS with the help of a coworker who also has it. My doctors were looking for horses and coming up with no answers. So this will be my story of how this new adventure goes now that I know how to advocate for myself and better communicate my symptoms. More info on EDS here:


Onto the actual post:

The day after Christmas, I saw my GP (who I dislike) to get referrals. I spent most of November and December in extreme pain and missed a week and a half of work. So, I decided it was basically time to just demand what I know I need. I managed to get referred to PT, pain management, and physical medicine (more on that later). After getting my blood pressure taken, I got dizzy, so I took this as an opportunity to ask him about getting tested for POTS (which can cause changes in heart rhythm and blood pressure). Despite the fact that he knows next to nothing about EDS, he waved off my complaint as “just dehydration” and refused to give me a referral. After an EKG and some more pushing from me, he said he would call the office that can do the testing and see if they recommended I be seen, not without mentioning that even if I do have POTS there’s no treatment. Let’s just say I’ll be asking for a new GP.

Yesterday I had my initial appointments with PT and pain management, both of which went suprisingly well (I’m used to being waved off by doctors who only heard of EDS once, if ever, in medical school). My PT knew of EDS, but only because the son of another PT in the office happens to also have it. She brought in her coworker to consult and they decided they would treat me as a team. They also were very open to using the Muldowney Protocol for EDS that was developed by a PT who has been treating patients with EDS since the early 90s. I bought a PDF of his book last night and will be printing a copy to give them in a binder on my next visit. Maybe now PT will help me instead of increase my injuries.

Next was pain management. It’s always shocking to doctors when I tell them I don’t drink, smoke, do drugs, plan on having kids, or take any pain killers. I guess it’s rare. I have lots of reasons to abstain from these things, not the least of which is my shitty health. Anyway the doctor was very nice and actually listened to me. He referred me over to get accupuncture on my upper back and neck, so I’m sure that will be the center of a future post. I also received injections on the left side of my upper back, around my injured shoulder. Six total. I got dizzy and needed to be given juice and rest with a cold towel pressed to my head —partially because of the injections, but also because the chair I was in was moved up for the injections then lowered back down to normal. The motion of the chair plus sitting back up definitely contributed to my dizziness. I was also prescribed lidocaine gel and an NSAID (though I don’t want to take it as it has a mild to moderate chance of interacting with my Effexor).


Overall, I’m hopefull to possibly improving my quality of life that has taken a sharp nosedive in the past 5 years. I was the youngest patient in any of the waiting rooms though, so I think I’ll always feel like and old lady wearing the skin of a younger person (and I have the cane and groucinesd for prove it). It was a long 4 hours in the clinic, but I got some help and managed to finish the book I started on Thanksgiving break. Hoping 2018 is a better year...

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