In 2015 I was diagnosed with osteoporosis, which is a common side effect of living with Ehlers-Danlos Syndrome. EDS causes joint pain, which makes it difficult to exercise, and inactivity over many years can lead to weak bones. I was diagnosed after a bone scan, which is a brief non-invasive process that measures a person’s bone density. I’ve had several scans since 2006. You can read about my previous scans (HERE).
There are drug treatments for osteoporosis which apparently work well but can cause difficult side effects, for example osteonecrosis of the jaw (progressive death of the jawbone). Thankfully in 2015 my bone density wasn’t considered low enough to justify drug treatment. However I did have additional calcium added to my parenteral nutrition bags and I started taking a vitamin D supplement called Colecalciferol. Regular exercise is the best treatment for weak bones, but unfortunately due to chronic joint pain that’s not achievable for me. I stand upright for 45 minutes a day so some strain is put through my bones. But as I can only walk a few paces I spend most of my time sitting in my wheelchair or lying down due to dizziness. Overall I’m highly inactive and there’s little chance of that ever changing.
I had a further bone scan in 2016, which surprisingly showed an improvement in my bone density. A scan in 2017 showed a decline, and my latest scan was a few weeks ago just before the lockdown started for coronavirus. The results take a couple of weeks to process. Due to the pandemic my GP is currently working from home and couldn’t access my full scan results, or my 2017 results. He was only able to tell me that the rheumatology department described my results as ‘a bit worse’. Thankfully they still didn’t think I needed drug treatment. Realistically that was the best result I could have hoped for and I saw it as good news.
Osteoporosis isn’t a painful condition to live with, but I think it affects my behaviour. People with osteoporosis suffer fractures more easily and often recover from them poorly. In some people with low bone density fractures can remain permanently painful. I’m aware my bones are brittle and my body overall is pretty frail. I’m over six foot tall and weigh less than 9 stone. Consequently, when I move around I’m pretty careful, as one fall could be life changing.
I have regular blood tests due to being fed by parenteral nutrition. They show healthy levels of calcium and vitamin D and I’m as active as I can be, so I’m doing everything I can for the condition. My next scan is in another two years. Note to self: remember you have to lower your trousers for the spinal scan. I forgot for my last visit, and after giving my age as 47 I had to reveal a pair of Star Wars boxer shorts. I felt rather daft, and I’ll be nearly 50 next time!
Thanks for reading, Ceri.
A rare photo of a camera shy contortionist.