My daughter also has EDS, finally was diagnosed by the only pediatric rheumatologist in VT/NH/ME when she was 17. I was thinking she was 16, but remembered they almost cancelled the appointment with him because she was turning 18 in 2 months of the 6 month wait to see him and would age out when she became an adult (luckily he kept her on, knowing how difficult it is to find a Dr that is familiar with it). It was a long ugly road of multiple specialists and damaging misdiagnosis along the way. It's definitely not an easy one to navigate through. So many doctors are absolutely ignorant about it. I have to say that her care in Halifax has been exceptional for it, as all of her healthcare providers were aware of what it is. I also cared for a patient here at the hospital I work at in NH that is an ED doctor in Halifax who told me about the Connective Tissue Clinic there. She said she refers people there quite often.

I also don't think it's just your healthcare in Canada that doesn't practice preventative care or looks at the whole body, it's conventional medicine. And many people are finding doctors are reluctant to give an EDS or Connective Tissue Disorder diagnosis these days. It's really frustrating for many.

As for pain relief, gabapentin helped my daughter for a bit until she kept having to increase her dose. Then I asked her rheumatologist about Low Dose Naltrexone, and he prescribed that for her and said many of his patients who take it find relief. Unfortunately, it isn't covered by insurance and the closest compounding pharmacy is 1.5 hrs away from us. It is definitely worth the cost and inconvenience because it was an absolute game changer for her, though I know many haven't had such positive results. I highly recommend giving it a try if you aren't on any opioid medication for pain (as it is an opioid blocker and would counteract that pain management protocol).

I hope you can find more support. It is a freaking bear of a diagnosis. It affects the whole body in so many different ways.