Hey everyone!
So I can't believe this but it's actually been 3 years since my last Prolotherapy treatment! I have taken the decision to return for more treatment so I thought I would update you as to why and how I've been getting on since. I suffer from Ehlers Danlos Syndrome, Fibromyalgia & POTS, I started having serious problems aged 13 and I was finally diagnosed in my late teens. There is no cure for any of my conditions but after 10 years of trying every single 'conventional' treatment available on the NHS I found out about Prolotherapy online which in the U.K. is only available privately.
A little recap on what Prolotherapy treatment involves. A sugar solution is injected (via a very long needle I might add!) directly into the ligaments causing them to inflame and over time the body will naturally produce more Collagen, thickening the ligament and hence stabilising it. Mine are all naturally extremely weak and unstable as I was born not producing good levels or quality collagen this is what causes my chronic pain and other symptoms. I'm not going to lie it is agony as each treatment takes a while and you need multiple treatments so I find it quite traumatic - probably the reason why it's taken me 3 years to go back for more! Usually you get gas and air and/or some local anaesthetic with it although I had no pain relief at all at my previous place! For more detailed information on Prolotherapy see my post here.
I found Dr Pattinson in London who treated both my shoulders, my left hip in three spots, my knees, ankles and arches of my feet. I went for 10 treatments before he retired. I saw great improvement after I was treated by him, I was doing really well at the gym and became the fittest that I think have ever managed to be. I also stopped trapping my nerves in my neck and shoulders and having muscles spasms. Although my pain levels were still very high I think I was able to manage activities for longer until I got to that point.
However over the last 18 months I have deteriorated quite badly again. Obviously the underlying problem (my Ehlers Danlos Syndrome) is still here and always will be as it's how I was born and Collagen naturally replenishes itself. So the Prolotherapy treatment is something that will wear off and therefore need topping for someone with my condition. I have been struggling with my pain levels all over, muscle spasms regularly on the left side of my neck and shoulder, tendinitis and I have had new problems with severe pain in my tailbone when I'm sitting. I also suffered with tonsillitis last year which took me 8 months to get rid of.
Me being being I have tried lots of other things in between having Prolotherapy too! I've tried having trigger point injections into my worse points on my shoulder and neck. These are like a mixture of local anaesthetic and a little steroid to try and 'switch off' the receptors. This helps for a couple of weeks and are useful if I have something in particular I want to be able to do i.e. attend a friends wedding but I find when they wear of my pain returns angrier than ever and it puts me off having them too often. I have also been having regular acupuncture which I find helpful on a slightly more subtle level, but it's much less traumatic that my other treatments and I think it just helps take the edge of some of my symptoms.
I believe I needed to see this deterioration though to appreciate how and where the Prolotherapy helped me and also how long it lasts for me. Tomorrow I am off to The Tonbridge Clinic in Kent to have a consultation and my first round of Treatment with Dr Bowman. As you may remember Dr Pattinson introduced me to Dr Bowman when he knew he was retiring. As it's such a specialist and unusual treatment there aren't that many who do it and even less who are also familiar with my condition! So it was great to meet and be passed over to someone else that Dr Pattinson trusted and respected, it makes me feel more confident going up there. FYI It's still around £200 per treatment! I've budgeted for 6, I'm hoping I won't need anymore than that for now. I know it definitely helped my shoulder areas so I would like to have both of those treated again and I am hoping we can discuss which other are areas would be helpful too. I will let you know the outcome in my next post! As awful as it is at least I know what to expect.
I just wanted to say thank you so much to every person who has been in touch with me following my blogs on my condition and treatment! I still get messages to this day asking how I'm getting on and for advice and it really means a lot.
