About my symptoms leading up to my diagnosis.

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Let me tell you a little about my medical history.

When I was young (from about 7 years old) I would tell my mom quite often that my joints and muscles hurt, she says I brought it up often enough for her to ask the doctors about it but they always replied that it was just growing pains. I began gymnastics at around 12 years of age and was an all around athlete so was physically strong through my teens. I had my baby at 18 years and even though I gained weight, I never really lost that much muscle. Through my 20’s I eventually lost all the weight, was very active and social which was enough to keep me fit.

I’m not sure this is relevant even though part of EDS includes gastronomical/intestinal problems but at 30 I developed a gallstone and this was allowed to build up for nearly a year, constantly being blown off by doctors as indigestion for which I was given antacids. For the last 8 months I could not eat a meal without vomiting most of my food. I lost too much weight and looked gaunt. Eventually I went to the US to get a quick and correct diagnosis then went back to the UK for a surgery to remove my gallbladder. At this point I became jaundiced which meant my liver was starting to fail.

At age 31 I began experiencing uterine pain and cramping, it progressed to the point that I had to quit going to university and became pretty attached to my bed and hot water bottles. This wasn’t just a monthly visit either, this was almost everyday accompanied by some level of spotting or bleeding. They put me on hormones for about 8 months which made me gain like 40 pounds (which came off as soon as they stopped). This also meant that I was no longer physically active though and so lost a lot of muscle mass and turned a bit ‘soft’ for the first time in my life. I was diagnosed with Endometriosis.

At this point, age 34, I started to have really bad back pain. Some days I couldn’t move very much and a couple of times I couldn’t even bend my torso to sit down! The doctors didn’t understand why it would be related to my Endometriosis pain but I knew it was linked somehow to what had been going on (it was linked to the inactivity caused by the Endometriosis) and kept pestering them because I wanted to be active again so badly! I was misdiagnosed as having Sciatica at least, by a caring GP.

One year later after some gentle physio and traction (which did nothing) I finally had an MRI scan (this is in England where we have the National Health Service, our taxes pay for ‘free’ healthcare so it’s totally SLOOOWWW!). The MRI came back mostly clean (the top of my spine at my neck is curved completely in reverse) but luckily they transferred me to a physio specialist in December 2011. It’s weird they make you wait so long to get tests but they wasted an MRI on me because the physio specialist could have just diagnosed me with an exam(!). She shared the results and was so puzzled. She started giving me a physical exam while chatting and noticed that I was quite flexible even though I was in so much pain. I explained that I used to be a gymnast so I’ve always been flexible. She asked if I was naturally flexible before I started, which I was and that’s when she had a light bulb moment.  She immediately had me take the Beighton Score test which gives you nine flexible poses to try (like pulling your thumb down to touch your wrist) and I scored perfect 9/9. Unfortunately I’m very flexible which I always thought was really cool and made me feel like I was just naturally talented but no it was just a symptom.

I was glad to finally have a diagnosis after so long and was eager to know how to get rid of it. Sadly she said there is no cure for this and the only way to get back to normal is to become ‘extremely physically fit’. I was pretty happy actually at that point, it’s the perfect motivation to stay in shape for the rest of my life, awesome. I could live with that and immediately immersed myself in a new plan to get better.

Eventually I realised the pain still wasn’t going away which led me to finding my support groups… see next blog post…

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