Published: 25/02/2021

My journey with cEDS and CCI

Hi! My name is Paul and I’m in the UK. I have finally come to the realization that Ehlers-Danlos syndrome (EDS) may be behind my ‘troubles’, but more importantly in relation to Craniocervical Instability (CCI).

A few facts to start with. I was, what we call over here, ‘double-jointed’, as a child mainly around the hips and was good for laughs at family gatherings. In my 20/30’s my knee joints would extend, allowing me to out-jump men who were a lot taller than me when competing to head the ball in competitive soccer games. Apart from that, I was pretty normal. Naturally fit. Lots of walking/hiking, gymnastics (basic), canoeing, soccer, five-a-side, handball, etc. I’ve never smoked, I’ve always had normal bloods and a really healthy heart rate.

My issues really started at the age of around 50. I ruptured my ACL in a non-impact moment in a soccer game. Tiredness then stomach issues and breathlessness bending over to tie my shoes. All investigated separately, nothing found. Onto concentration issues (picking up inferences in my work assessing people) then a feeling of about to pass out. I had to finish work eventually. 

Sure enough, I had a full syncopal episode and badly injured my head. I was investigated for a number of possibilities including POTS. Eight weeks after being told my heart was strong and no cardiac issues, I had a cardiac arrest and heart attack and subsequently had two stents fitted. Right up until the event I had a 120/80, 55bpm heart rate, and normal cholesterol. I had pain in the arms and chest for twelve months before but was told it was unrelated.

I started cardio rehab but couldn’t finish it. The dizziness had become a type of vertigo and was affecting my vision, and I still had pain in the arms.

Two years on and my symptoms are worse, I’m unable to exercise. I saw a rheumatologist about the pain which was now in my hands. No arthritis present, but she discovered there was no cranial fluid between C4 and C8 in my cervical cord. By the time the neurosurgeon operated, two discs had collapsed, and I should have been in more pain than I was.

That’s the end, right? Well, it now appears that the joint at the top of the spine and the base of my skull C0, C1, and C2, isn’t supporting my head and that the nerves, as well as the autonomic /sympathetic nervous systems, are being impinged. This could be the cause of so many of my symptoms, and possibly all of my pain/POTS, syncope, gastric/eye/vertigo/heart issues and it could be down to EDS weakening the ligaments and cervical joints. One way or another, I feel like I am finally making progress.

Thanks for reading if you got this far (I left some stuff out!). My dad used to say ‘where there’s no sense, there’s no feeling’ – I thought he was joking!

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