I was in hospital last week for an x-ray on my shoulder. This is the latest investigation after two years of searing pain in this shoulder (which I have always been able to sublux at will). It was found that I’d grown a spur of bone (common in the elderly I’m told!) which has been digging in – not the dozens of things they tried first before actually x-raying it.
While I was waiting, a young girl was playing in the corridor. I noticed her joints were bending interestingly, and when she did the splits I started a conversation with her mother and asked if she could do the typical Beighton tests. Of course she thoroughly enjoyed showing me her bendy thumbs, fingers and knees. Yes, she could sit in the ‘W’ position and yes, she had flat feet, etc. She didn’t look symptomatic (but we all know that experience!), and may well not be. Her mother looked surprised at my own finger movements. “I’ve never seen anyone else’s fingers bend like that! I thought my children were the only ones who could do that.” As we continued chatting it emerged that her adult son had all sorts of symptoms consistent with EDS. He had severe health issues, especially with his feet. His ankles were causing him so much pain that he had had one amputation and was going to have a second foot amputation in a week’s time.
I was rather shocked, to put it mildly. She had never heard of EDS or hypermobility and her son had never had a proper diagnosis for his foot pain. I was left feeling perplexed that even doctors are still so ignorant of EDS, and told her to start googling! A chance encounter……but then we didn’t know what was wrong with us until a chance encounter with a physiotherapist who we were visiting for something else.
I started to become curious about my strange body after a trauma at work in 1999. Won’t go into it here….it’s all in the section My Story. But after five years of sleeping the greatest part of each day and not being able to concentrate to read even a page of a book, and a further five years of continuing not to work (sixteen years later I still cannot work full-time and probably never will be able to), I knew something was dreadfully wrong. Kind and well-meaning people gave the normal advice: all in the mind, in some way or other. I had a pretty shrewd idea it was all in the body, triggered by trauma. In January 2013 my daughters and I were diagnosed with Ehlers-Danlos III, Hypermobility Type. Diagnosis means freedom in the sense that at last I knew that the invisible aches, pains, subluxations, dislocations, chronic fatigue, depression and inability to function had a real physical cause.
There is no cure. Yet.
Daily I am trying my hardest to make sense of this newly-discovered condition, unknown to most people, and which has little research or media coverage (no doubt until someone famous starts to tell the world about it).
Welcome if you too have Ehlers-Danlos, or if you’re supporting and loving someone else who has, and want to understand more. I wrestle with a feeling that it is indulgent omphaloscopy to write a blog. Who wants to listen to everyone else’s aches and pains when they have enough of their own! But I’ve found it surprisingly helpful to join forums and read about the journeys of others with EDS, and my aim is to make this something of a diary as well as a repository of helpful articles, links and progress in EDS research. If it helps others too, then I couldn’t be happier. Please contribute. Your ideas and thoughts matter to me. Thank you for your love and support.