EDS appointment in London.

So today I traveled up from Dorset/Hampshire (I’m never quite sure where to say I’m from as I live pretty much on the boarder between Hampshire and Dorset.) to London (which is just over an hour on the train if you get the fast one) to the Hospital Of St John’s and St Elizabeth’s for my appointment with a rheumatologist professor. The last time I saw him was back in 2011, my Professor of autonomic dysfunction who I see for my POTS referred me to him as he thought I had hypermobility along with POTS, the rheum diagnosed me back in 2011 with Ehlers Danlos Syndrome Type III Hypermobility (EDS). At the time I didn’t have many symptoms other than some lower back pain, so we just left it with that; a diagnosis as at the time nothing needed to be done. 

Three years later and I developed joint pain within 6 months it has spread to most of joints being affected by pain, not constantly but enough to warrant another appointment to see what can be done. So today I saw the professor, he said my pain is related to the fact I have EDS. We spoke about the last three years and what that has entailed for me, and then about the joint pain I have been experiencing, he then examined my joints and came to the conclusion that I need to have physiotherapy to see if that will help my pain. We spoke about pain meds and I said I am not allowed pain meds like opiates because of my headache and that if I want surgery then I’m not allowed opiates as I would then not be a candidate for surgery. So we are going to start with physio at the hospital in London, where the physiotherapists are educated about EDS and know how to treat it with physio, whereas if I went to someone local they probably wouldn’t be familiar with EDS and how to treat it. Which is true, I went to my local physio in October about my wrist and he had never even heard of EDS, so of course had no idea how to treat it successfully. I have an appointment next Tuesday up in London with the physio department. So that means the long and expensive journey up to London for an hour and a half of physio. Hopefully it will help ease my joint pain and help my joints not pop out of socket at inconvenient times.

I asked about the relation between NDPH and EDS, he said that my neuro is the specialist on that front and that he said they are not related so I should take what he says. He said there is a relation between EDS and migraine and that EDS patients are more prone to migraine but not NDPH, but the impression I got from what he was saying was that he hadn’t come across many people with NDPH before. 

So will see if physio helps and go from there. But right now my head is at an 8/10 on the pain scale after my busy day in London, so I need to go to sleep and hopefully it won’t be so bad in the morning. 

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