A Slightly Belated Update!

Hi,


I'm really really sorry I've been neglecting this blog lately! Turns out its harder to keep all 3 of my blogs up to date than previously thought!

Thank you to everyone who has been keeping up with my blog and to those who have got in touch with me! I've had an incredible response so far which was really unexpected and I'm so pleased to know that people have been reading my blog and finding it interesting and helpful because that exactly what I set out to do.

I went for a follow up appointment just 6 weeks after my last injections (at my doctors request) it ended up being a bit of a waste of time and money to be honest though! He basically just said that it won't have finished working yet anyway so it was too soon to tell! Annoyed is putting it mildly. And he did upset me a bit by saying he was disappointed that my pain hadn't improved yet (especially as I had gone in all positive!) and that it might not be worth doing any more treatments. I tried to explain to him that my research showed that people with HMS/EDS can take longer, more like 4-6 treatments to notice the full benefits.

I don't think the prolotherapy doctors are necessarily all that familiar with HMS/EDS or particularly understanding they're more used to treating sports injuries which can be very frustrating! At the end of the day though as long as they're really good at the prolotherapy injections then that's what matters because I've got my other doctors for everything else.Sometimes I feel like there should be a handbook or a course on how to be a patient and how to handle doctors!

I do feel like my shoulder is a little more stable now though, it's definitely not clicking, clunking and subluxing as much or as easily as before so that's a start! I have been to see my physio recently and he was delighted with the stabilisation so far and says he can see and feel a noticeable difference in the shoulder which he could practically pull right out before and sounded like a musical instrument everytime it moved! My pain hasn't changed or decreased yet but my physio reckons that understandably it will take a bit more time as it's been such a long term problem. It definitely hasn't gotten worse though! I felt a little bit of tenderness around the injection site still for about 6-8 weeks after but that's better now.

Anyway I have been for my 12 week follow-up now. I had to be quite tactful with everything I said but eventually the outcome was that I'm going to have another round of 3 Prolotherapy treatments on my shoulder starting the 4th of June. He's going to talk my physio first though because we're thinking of trying the back of my shoulder this time to stabilise it all round. I think it's a good idea because my scans show I have multi-directional instability. But I won't know for sure whether we're doing the back or front of my shoulder until I go in the 4th! Hopefully this will further my progress though.

If we are going to do the back of my shoulder though I'm not sure how I'm going to manage lying on my front, as it hurts to keep my neck turned to the side. I'm alright like when I'm having a back massage or something and my head is facing forwards in the hole but they don't have that there. I'm thinking I might be able to manage lying on my side if I'm supported by lots of cushions. Anyone have any thoughts?

Well anyway I guess I'll find out tomorrow, wish me luck!

Katie x