Hello and welcome to my blog!
With this blog I hope to document some of the challenges of living with Ehlers- Danlos syndrome (EDS) hypermobility type, a hip condition (acetabular retroversion, femoral retroversion and femoroacetabular impingement) and degenerative disc disease.
This is the first time I've written about any of my 'quirks' - I'm often reading about other peoples' journeys & experiences and the idea of writing it all down always felt quite scary to me.
However, after an exhausting journey towards a diagnosis of EDS & my hip problems, I finally decided to speak up and start this blog for a number of reasons - as an outlet for me to vent (it really hurts!), a way for me to keep track of what is going on, to help others who are perhaps suffering with similar conditions to me & hopefully raise awareness of some of the pretty rare things I and a few others are unfortunately living with.
My real problems began in 2008 when I was 17 and riding a horse. I had been riding since I was 9-years-old and it was my greatest passion as a kid, nothing could beat spending all of my free time with horses! One day as I was popping over little jumps in the field, I felt the most painful & strange sensation in my lower back which was made worse when the horse moved. I attempted to wriggle out of the spasm and weird pressure pulsing in my back, but to no avail. I remember getting home and not being able to stand up straight, but it was weeks until I got to a doctor as I was just dismissing it as being something that would go away by itself. How I was wrong.
A few months went by of excruciating pain, GP visits & an MRI, when I was finally told I had a herniated disc. Doctors were all shocked for my age and I was met with many variations of "you're just very unlucky". I had two epidurals & they both worked wonders for a few months. I will never forget joyfully skipping out of the hospital with a beaming smile on my face, feeling free from the shackles of pain - then my dad bursting my balloon by telling me I had to take it easy as the problem was still there.
Fast forward a few years and I was again met by chronic back pain, this time coupled with an aggressive burning and sharp groin pain. I had another MRI which showed I now have 3 slipped discs. Around this time I was also diagnosed with arthritis in my first metatarsal (big toe). My groin pain was long being associated with my lower back and it took a lot of persuasion for me to finally get my hip checked out! Physios were also beginning to tell me about the the huge range of flexibility I have in most of my joints and the strange lack of internal rotation I have in my hips.
And the true story of my health has been slowly unraveling since...
In February of this year I was finally diagnosed with EDS hypermobility type after a visit to UCLH. This means that I have a genetic condition which affects my connective tissues. It explains the elasticity of my skin, instability of my joints, dizziness, fatigue and many other symptoms that come with faulty collagen.
A few months ago I also found that I have an extended labral tear in my right hip (damage to the cartilage in my hip socket) - and have since been told that I have some complex and reasonably rare hip problems. You'll see what I mean...
I have acetabular retroversion (the mouths of my hip sockets are facing backwards), femoral retroversion (the ball parts of my hip joints are also facing in the wrong direction), femoroacetabular impingement (FAI) - cam & pincer (the shape of my ball socket is slightly deformed & my hip socket also has extra bits that aren't supposed to be there). This can cause a lot of friction and I'm sure feeling it. I'm very thankful to have my awful hip pain explained, but very nervous for the journey ahead! I have since had an x-ray guided steroid injection as a diagnostic tool and I know that I'm soon going to need some sort of hip preservation surgery.
This is all really new to me, confusing & frustrating, but hopefully I'll be able to use this blog to document the rocky road of my conditions.
If you can relate to any of my conditions it would be great to hear from you!
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