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  • Writer's pictureBhrigha

The Long Road to Diagnosing hEDS



May is Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorder Awareness month. Chances are, you’ve never heard of them and might be wondering, if I’ve never heard of them, then why do we need an entire awareness month for these two rare disorders? As a leading expert in EDS, Professor Rodney Grahame of University College London and Department of Pathology, School of Medicine, University of Washington Seattle says:


“No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome.”


I first heard of EDS back in 2014 when I started teaching Pathology at Everest College in Vancouver, WA. I was presenting a pathology slide show for my class that was made by someone else and went over the symptoms with them, thinking to myself, that sounds like me. I decided to research it a little bit and discovered many similarities to things I’d been dealing with my entire life.


EDS is divided into 13 different subtypes and each subtype can affect the body in different ways and different people can express symptoms is vastly different ways. Essentially EDS is a connective tissue disorder that affects joints, skin, organs, vascular bundles, eyes, and more. Hypermobile Spectrum Disorder applies to those who don’t meet the traditional standards for an EDS diagnosis but may fall somewhere outside that pathology. Hypermobility affects joints, tendons, ligaments, fascia and can cause chronic pain that can often be at best misdiagnosed as fibromyalgia, chronic fatigue syndrome, and at worst dismissed as “being in your head” and told you are “fine.”


My story

As a child, I still vividly remember the horrible leg and foot pains I suffered that would have me in tears. I have pictures of myself with visibly flat feet, ankles that rolled in medially and what I call “X-legs,” where my knees touched but my feet were apart. I grew in spurts, had long gangly limbs, and was taller than my peers. The doctors gave me heel lifts for my shoes and said it was just “growing pains.” I was a horribly uncoordinated Gumby-girl, so my parents started me in ballet, tap, jazz, and tumbling at age four. At some point I stopped tumbling I think because they were afraid I’d really hurt myself, but stayed with dance for many years and loved it. I fell off a slide when I was four and broke my arm and was twisting my ankles often. Around age 9, I stopped dance classes and focused on music, piano first and later added flute in band. When we moved to Florida, I was introduced to extreme heat and humidity for the first time and remember nearly passing out many, many times. I tried to play tennis, soccer, and softball but ultimately had to quit because of extreme heat intolerance. I didn’t sweat very much, if at all, and so my body couldn’t regulate its internal temperature well. My blue-green eyes were also extremely sensitive to the bright sun in Florida. Between fifth and sixth grade, my eyesight suddenly deteriorated. I had extreme myopia with astigmatism, needing glasses that literally were as thick as Coke bottle bottoms. Whereas before I was mediocrely trying to fit in, over one summer I suddenly became a total nerd. I was taller than almost all of my peers, gangly even though I thought I was fat, still uncoordinated and still doing my dance stretches. I could do weird things with my shoulders, elbows, arms, wrists, fingers, knees, hips, and could unhinge my jaw like a snake eating a giant rat. I was told I was double jointed and enjoyed grossing my family out. Miraculously I never broke anything else, but had lots of sprains, strains, and developed horrible Temporo-mandibular Joint Syndrome. I had random skin issues and rashes with bad abdominal discomfort, bloating, and food allergies. I was extremely sensitive to any pharmaceutical medicine, with a life-threatening allergy to Sulfa drugs. I had very low blood pressure - 90/60 was my normal, and low blood sugar. This added to my fears of passing out. Everyone else just thought I was pretty healthy. Unbeknownst to me for another thirty years, I was the poster child for hEDS. I also believe I was on the autism spectrum, which is also a comorbidity with EDS. I started avoiding doctors all together because most of the time, their recommendations just made me feel worse. I discovered holistic health care.


When I started going to massage therapy school in 1994, I found out just how unusual my jaw was. I thought it was normal to have near daily headaches, lots of neck and shoulder pain, and a jaw that would occasionally lock, and pop twice on the left and 3 times on the right just upon opening it. No dentist ever said anything about it. My teachers and classmates assured me that was absolutely not normal. So I went to a TMJ specialist dentist who confirmed this abnormality and made me a special bite plate for my lower jaw, as this was the only way to accurately reposition the jaw to relieve all that tension and reset it. I had one of the worst cases he’d ever seen. I was supposed to wear this for a year, going in weekly so he could shave off a bit to help realign my unhinged jaw joints. In school, I was nominated to be the demo person for a special guest who specialized in TMJ therapies, including Craniosacral Therapy with Intraoral work. That first session was miraculous and afterwards, my mouthpiece no longer fit. The dentist was amazed when I went back. I continued to see that therapist and the dentist. In six months time, I was out of the mouth guard. My jaw had realigned and no longer popped or locked and my pain levels had significantly decreased.


In 1995, I started dancing again, this time it was bellydance, which was much better for my body. Until I became a professional performer, and in 2004, was in the worst car accident of my life. All the pain I used to have came back multiplied by a thousand. I was the passenger in a car that was hit multiple times by a drunk driver. We were stopped at a red light with one car in front of us and she hit us at approximately 60 miles an hour on initial impact. My poor hypermobile body was thrown forward and then hit from behind by a flying suitcase, then as I was trapped in the car, she hit the car multiple times leaving the scene of the accident with injuries. My body instantly went into shock and then a flare response with inflammation. The health care providers I saw after that also mentioned hypermobility as the reason for my delayed healing. I became a certified mat and apparatus Classical Pilates Instructor to deal with my own symptoms. Then in 2007, there was another drunk driver incident and again I was the passenger in the car that was hit but this time I was turned around talking to someone in the back seat on impact. This caused scoliosis, and just about every single rib now would disarticulate, along with lateral whiplash and nerve damage. And again hypermobility was mentioned as a cause of prolonged and chronic pain with delayed healing. At this point, still no one knew of or talked about Ehlers-Danlos Syndrome. I wonder if anyone even knew about it then.


It would be another seven years of struggle with fibromyalgia-like symptoms, extreme chronic pain that raised my pain tolerance to superhuman levels because I still refused to take any pharmaceuticals. I did meditation, yoga, and bodywork to manage my symptoms. And still kept performing professionally. I had to wear super tight bra tops to avoid costume malfunctions with my large chest and these tops caused severe pain. I would often cry before or after performances from the pain. I also had more sprained and strained ankles and knees, constant foot pain, and my hips now popped constantly. I remember actually falling in one performance where I was doing my signature Irish dance fusion and I jumped right up and kept dancing like nothing happened. My ankle was not happy with me and I’m lucky I didn't tear anything. It took months to heal. My left shoulder (the one not constrained by the seatbelt) also dislocated on a near daily basis since the first car accident. The ligaments that held it in place were so overstretched from the impact, I felt like Mel Gibson’s character in the Lethal Weapon movies. I learned to put my own shoulder back in. My sacroiliac joints loved to dislocate, sliding around and impinging nerves, making movement near impossible some days. I could still bend over with straight legs and place my palms on the floor. I could score a 7 out of 9 on the Beighton scale which is used by health care professionals too diagnose EDS. As an adult, 5 is the minimum for an adult diagnosis.


And so in 2014 when I learned of Ehlers-Danlos Syndrome for the first time, I knew that explained my lifelong struggles. It put everything in perspective. It made sense. My food intolerances and allergies changed and grew and shrank for no logical reason. I believe this is Mast Cell Activation Syndrome, which is also a comorbidity of hEDS. I could eat something I’d been eating just fine for years one day and suddenly intestinal bloating and a skin rash could happen within hours. Currently, I avoid all nightshades (tomatoes, potatoes, eggplant- still upset about no baba ganoush, artichokes, peppers of all kinds, wheat, gluten, lentils, kidney beans, garbanzo beans- still upset about no hummus, and some other things I can’t recall at the moment. This means I’ve learned how to cook all my favorite recipes without these ingredients. And I don’t miss them, but still frustrating and eating out is challenging.


When my trusted chiropractor who also seemed to think I had some type of hypermobility disorder moved out of state, (miss you Cece!),I went back to another chiropractor I’d seen on and off for years and respected him as a colleague. When I approached him about hEDS, he scoffed and said he thought that was one of those new weird conditions he’d never heard of until about 10 years ago, that was a process of elimination diagnosis and not “a real diagnosis.” He also said “You don’t have that.” I looked at him like he was the crazy one and said, “I’ve been hypermobile my entire life. What you see now is a product of 2 bad car accidents and a fifteen year professional dance career, with parts of my body tensing up to create stability, and very unstable joints in other places. Plus I’ve used bodywork, yoga, Pilates, and other holistic care to get to this plateau.” Needless to say, I never went back to him and am still hurt that he didn’t really see me or my issues as valid. I felt betrayed, gaslighted, and dismissed. I have not been to a chiropractor since then.


In 2020, I started changing the way I do bodywork so that I could keep working. I was having tendonitis in various places including my thumbs. I stopped doing anything that hurt, which included Swedish, Deep Tissue, Myofascial, Structural work. I got certified in Neurovascular Release™ and Bowenwork™, combined that with other things I already did: Craniosacral Work, Sound Therapy, Energy Work, and prolonged my career. I pivoted my business during the pandemic, survived, moved, and am now thriving with a steady clientele doing only things my body tolerates. I have a ton of resources for those dealing with hypermobility issues, have taken courses on healing hypermobility and now help others who are hypermobile and may have a form of EDS or HSD. I plan to develop a class and other resources to share to help other bodyworkers understand these conditions. It is something overlooked, not really taught in schools due to lack of understanding, and I feel I have a unique perspective.


In 2023, I had to stop teaching yoga. Too much sitting and demonstrating while teaching was causing my sacroiliac joints to go out, which would then create a cascade of pain from my low back to my feet. I can now only do Restorative, Somatic, and Yin yoga in limited ways. I do apparatus and a bit of mat Pilates to stay toned and strengthen my muscles. I have to be very careful about positioning of my body, whatever I am doing. It is literally something I think about all day long, whether I’m working or hanging out. I consciously think about where are my feet/knees/hips/shoulders/neck, is everything aligned? It's exhausting some days. And I now swim and mermaid every chance I get. In the water, in one of my mermaid tails, I am free of pain and supported by the water, flowing and graceful. Mermaiding has become my favorite exercise, therapy, and pastime.


And so the newest chapter in this hypermobility saga seems to be that to create more stability in my left foot, my body has decided to grow bone in a place where there is none: in the space between my second and third toes. See photo of my Xray above. The new bony lesion or growth is not attached to other bone so it is not a bone spur. It did not break off of another bone. There are 3 new “bones” in my foot that are causing pretty intense pain on long days of standing. Urgent care confirmed this and sent me to a podiatrist who wants to cut them out but I’m terrified of surgery without anyone knowing my full story and getting the hEDS diagnosis, preferably with an additional one of Postural Orthostatic Tachycardia Syndrome and/or Dysautonomia. I feel this is important before anyone gives me anesthesia or cuts into anything.


And so, during this month of EDS Awareness, I went to the first primary care doctor I’ve seen outside of urgent care in decades. I chose a Doctor of Osteopathy, thinking she would be more open to holistic therapies and be more knowledgable about bones. My visit was a mixed bag and my “doctor anxiety” reared its ugly head, causing a panic attack or two. But, I got the first diagnosis: hEDS! Finally someone believed me. She even has other patients with it and so was familiar with the condition. I don’t think she understands just how low my blood pressure and pulse is because she did not believe me about POTS since my vitals were in “normal range.” “Normal range” is way too high for me though. The panic attacks and anxiety pushed those way up into what’s normal for other people. I felt like I was going to pass out. So I plan to keep pushing that issue and track it on my own with an Apple watch.


And so, after fifty-five years of living the hypermobile life, I finally have a diagnosis that confirms what I’ve known for at least 10 years. I know this is only the beginning of another part of this journey. I’m worried about having surgery on my foot to remove the extra new bones. I still feel stressed, dismissed, and a bit gaslighted, being told that my heart is “normal.” And this is why May is the awareness month for EDS and HSD: because so few doctors and health care practitioners know much of anything about these conditions. While there is some genetic testing for many of the 13 forms of EDS, there is no known genetic marker for hEDS. Much education about these not so rare conditions needs to come to the forefront. While hEDS is the most common form of it, it is more common than originally expected. According to the Ehlers-Danlos Society:


“Each type of EDS has a different prevalence in the population. Hypermobile EDS (hEDS) is the most common type of EDS by far. hEDS accounts for about 90% of EDS cases and is thought to affect at least 1 in 3,100-5,000 people. hEDS is currently classified as a rare disorder, but the true prevalence is not known and may be underestimated.”


Doctors are taught in school to look for horses when they hear hoofbeats, meaning look for the most common thing in the herd of pathologies. They often overlook the zebras and other ungulates, which causes harm in so many ways to people who just want to know why they feel so bad, and how to feel better. And so the zebra is the mascot of EDS. We are actually unicorns, magical zebra unicorns, with unique and sometimes baffling symptoms that are very real and not in our heads, as many of us have been told over the years. And there are more of us than originally suspected.


If you or someone you love suspects that they are a magical zebra unicorn, please visit:

The Ehlers-Danlos Society: https://www.ehlers-danlos.com

And if I can be of help either in person or sharing resources, please contact me through my website:

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