Attending a learning conference helped me to understand my body

Posted June 3, 2020

Lyndsay's story

I was only 3 when I discovered how bendy I was, and at the time I just thought it was funny. Around age 8 I became symptomatic with joint pain. My GP told me that ‘it’s just growing pains’, ‘it’s weak ankles’. I gave up and accepted the pain. At age 12 I started getting daily stomach aches and bowel problems. My GP said, ‘you’re too young to have IBS.’

 Again I gave up and accepted the pain. And so it went on.

At 27, I fainted during pregnancy. At this point they discovered a problem with my heart – this was eventually diagnosed as a First Degree AV Block – it causes similar symptoms for me as Postural orthostatic Tachycardia syndrome (PoTs) except I have bradycardia.  After this diagnosis I also got my IBS diagnosis.

The pain wasn’t so easy to diagnose: I was told it was carpal tunnel syndrome – then it wasn’t; it was my diet, it was a vitamin D deficiency. This continued until I moved to a new GP. My new GP was looking at suitable medication for anxiety but this is limited due to my AV block. At the same appointment, she was referring me to physiotherapy for my hand pain and had the lightbulb moment. 

She looked at the screen, ran through my medical history, then looked back at me and said, ‘Ehlers-Danlos syndrome’. At the time I had no clue what it was. It was a confusing and scary time but suddenly pieces were falling into place. I met a lovely physiotherapist who scored me 8/9 on the Beighton scale and I was referred to rheumatology. Unfortunately, my meeting with them wasn’t so positive – I was in and out in five minutes, she dismissed my pain, confirmed I’m hypermobile, refused to discuss my other symptoms (hernias, dislocations, skin problems, etc.), and told me I was lucky it was ‘just’ hypermobility and sent me on my way. I was referred to specialist physio – this time I was dismissed when I said my pelvis was out of place, then told this wasn’t her area of expertise. Thankfully I was pregnant and my maternity physiotherapist confirmed it was and rotated it back in.

My journey to diagnosis has been a difficult one. It took 23 years from paint starting to getting an official hypermobility spectrum disorder (HSD) diagnosis. I struggle to approach doctors for help and have little faith that I will be believed and supported appropriately. 

One thing that has helped me enormously was attending The Ehlers-Danlos Society’s learning conference in Edinburgh. I gained so much knowledge and information that I wasn’t getting from my medical team. The Society has helped me to feel believed and helped me understand my body.

Tags: , , ,

Categorized in: