It’s time to meet another member of our community! We are all different, and yet, so many of us are the same. See if you can find a piece of your story reflected in “B’s,” a Canadian living with Ehlers-Danlos Syndrome (EDS).
The Malleable Mom: Tell us a little bit about yourself!
B: I am presently 28 years old, born, raised and still living in the beautiful province of Ontario, Canada. I am currently the only one in my family with an EDS diagnosis, but I see a lot of the signs and symptoms in my mother’s side of the family. When I am not preoccupied with my health, I love to spend time with my sweet senior dog, who I recently taught to pick things up off the floor when I can’t bend over, hiking, camping and snow-shoeing, when the body allows it, and plenty of homebody activities like reading, watching Netflix, puzzles and playing board games.
The MM: When did you first notice that something was wrong with you?
B: From the outside I always seemed like a healthy child, no serious illness or injury, but for as long as I can remember, I’ve always had aches, and pains. I can remember as young as 8, crying because my back hurt. I headaches and stomach aches and other digestive issues constantly, but with a lot of family stresses, my doctor chalked it all up to “growing pains” and psychosomatic symptoms, said I was just an anxious and depressed child and referred me to a psychologist.
In addition to those aches and pains, I was always injuring myself – sprained ankles too many times to count, dislocated knees, multiple strains – all attributed to being a competitive dancer. Although I can always recall being tired, periods of intense fatigue began leaving me mostly housebound around age 15, and several times throughout my early twenties, but doctors never seemed to look beyond the usual suspect of mono. In my early twenties with the pain and fatigue getting worse, I was finally referred to a rheumatologist, who told me it was “probably Fibromyalgia” and handed a prescription for Cymbalta, without much else offered in terms of support or advice.
As I entered my mid-twenties the joint pain became worse, and I often was stuck in bed due to both fatigue, as well as low back/SI and hip pain that made it extremely hard for me to get out of bed, or to walk. My boyfriend, suggested I see a physiotherapist – someone I hadn’t seen since my dancing injury years. They pointed out that I am hypermobile, but I thought nothing of it – I was a dancer after all, wasn’t I supposed to be flexible?
The MM: How long did it take after that to get a diagnosis?
B: In my community, there can be a long waitlist to get a family doctor. Having initially only moved to my current city for school, I did not want to risk losing my family doctor back home, so I bounced around from walk-in clinic to walk-in clinic, trying to get help for the myriad of issues, and I spent approximately 5 years without a primary care physician which made it challenging to get much help. I did not get a doctor until mid 2015, who then referred to another rheumatologist – initially because my blood work showed signs of Lupus or Polymyositis. He confirmed that I, thankfully did not have either of those conditions, but diagnosed me with hypermobile EDS (hEDS). When I read the symptoms of hEDS, I cried for what felt like hours – it felt so validating to finally find a name for all of my symptoms.
I have since been referred to a number of specialists to try and manage the myriad of symptoms and conditions EDS brings, and am still working on building my ‘Dream Team” as you call it, Ashley . I have attended a pain management program, and the specialist has been amazingly helpful and supportive in my journey. As of September 2017, I have received a diagnosis of hyperadrenergic POTS, and am seeing a Mast Cell specialist within the next month
The MM: I am so glad you finally have the correct diagnoses, and you are finding your Dream Team! What do you want people to know about your experience with having hEDS?
B: I’m very fortunate that as a Canadian, my doctor visits are covered by our healthcare system. Also most of my drugs are covered as well because I receive government support. The downside of our system, particularly in more rural areas, is that you wait a long time to get into see doctors and specialists, and often have to travel a lot to see specialists – It took me 8 months after referral to see a rheumatologist, 1 year to see a POTS specialist, and I am still waiting to see an immunologist. Waiting for many tests such as MRIs, can also take a long time. It can be a frustrating experience waiting for answers and help. We aren’t generally able to choose which specialists we see, as it has be our PCP who refers us to someone, and obtaining second opinions can be challenging when we have fewer specialists in each area compared to much of the US. The upside, however, is I don’t have to worry about finding someone “in network” or co-pays which has been a great relief – but I can see some of the advantages of both sides.
The MM: What advice do you have for other people who are struggling right now?
B: 1. Advocate for yourself! Especially in a condition that most doctors are not knowledgeable, we sometimes have to educate them about what works best for our bodies.
2. Keep lists for all of your doctors – questions you have, medications you have heard about, symptoms you’re experiencing. Google Keep has been my go-to app for this.
3. Seek support of others – I have started a local EDS group which has been so rewarding and validating to meet others, many of us having never met another EDSer in person before. It has been so helpful to exchange our strategies for coping.
The MM: Thank you so much for talking to us!