Going Back

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.

Break-through!

Just a quick update but I really wanted to let you guys know that I had a real break-through at the gym today! My left hip, that I had treated, was feeling noticeably more stable and less painful compared to the right hip which wasn't treated!!!! May only sound like a small thing, it's just that one area, but for me it's a MASSIVE deal as this is my first breakthrough in my condition in 11 years & means the Prolotherapy really is working! BOOM!! It's still early days though so finger crossed/knock on wood that I'm not jinxing it! But I'm feeling more postive about the treatment now.

More substanstial update coming soon, promise!

Katie x

Happy New Year!

Hi,

I hope you all had a very Merry Christmas!

So I've now had four treatments with my new Prolotherapy doctor and am going for my fifth this coming Tuesday (tomorrow). I am still having the same five places done, both knees (into the capsules), both shoulders (also into the capsules) and three ligaments in my left hip.

Unfortunately my practitioner will be retiring at some point this year, hence why I'm cramming in as many appointments as possible right now! At the moment it looks like he'll still be around until the end of March so I'm booked in fortnightly right up until then. I think it's going pretty well so far but I am feeling rather emotionally drained. It's quite hard to remain upbeat and positive when I'm going through all this pain every fortnight. 

At my second appointment we tried some acupuncture into the trigger point in my left shoulder as I get really excruciating pain in there. The needles weren't in for more than a minute I don't think but I had a massive reaction on the journey home and it carried on for the next 7-8 days. I had shooting pains and spasms in my shoulder and going down my side. I know this means I probably need to preserve with it but that as well as the Prolotherapy was all a bit too much to cope with at once! So maybe I'll try again after I've finished the Prolo.

My doctor has also given me a new supplement called Collodeen to try which is supposed to aid healthy collagen production. Thought it was worth giving it a go, although I'm not sure how easy it'll be for me to tell whether or not it's making a difference. Has anyone else tried Collodeen?

As it's still January I feel I can say Happy New Year! Lets hope that 2014 is a healthy and positive one for us all!!

Katie x

New Doctor

Hey,

So I have been to see the new Prolotherapy practitioner in East Sheen.

I ended up having 5 places treated in my first consultation! Both knees, left hip and both shoulders!! The knees and the shoulders were both just into the capsule itself rather than directly into the ligaments but even so, oww. The purpose of that was to heal and shrink the capsules first before going for the ligaments. I had 3 ligaments in my left hip injected though. I think my body went into shock, I'm not used to having that amount done at once!

The doctor was really really nice though, something I'm not very used to! He was so understanding, listened to me and I felt like I trusted he knew what he was doing. He has been practising Prolotherapy for 30 years after he had it done himself and it worked for him, so he really believes in it. The consultation went well and we discussed together where would be the best places to target first. He thought he'd do my knees so that they both start healing together and I don't have one better than the other, the same with my shoulders although I do want him to target more particular areas on my bad left shoulder if possible. We decided to do my left hip as I can only sleep on my right side at the moment and he didn't want me to have to lie on it. The funny thing is I didn't actually realise how bad my hips were until he examined them! No doctor has examined them for many years. I mean I get a lot of groin pain, and my hips click about all the time but when he pressed down on 3 points on my hip I practically screamed! So hopefully the Prolotherapy will really be able to help that area especially if that's where my groin pain originates from. So we decided 5 places was enough for one treatment! I had 7 dressings on and he said he did a bit more than he usually would so he charged £200 instead of £190 for an hours consultation/treatment which I thought was really good considering. As I was having so many places done he didn't want to use the gas and air because he would have to wait for me to come round every time he needed to move me about and I didn't really have much local anaesthetic either. I think I will definitely have to insist on having something for my hips and bad shoulder next time! But he was so nice that I felt comfortable enough to ask him things like that.

I was in SO much pain on the journey home! Particularly as I couldn't re-heat my wheat bags for the journey home as they didn't have a microwave in their house, it's my best source of pain relief. We might try a service station, shop or pub or something on the way back next time. I did bring along some of those Cura Heat stick on heat pads just in case which was lucky but I don't find them quite as effective.

I found it really difficult to get up the stairs to my room when we got home, Mum and Dad had to help a lot!! We got back about 8.30 in the evening so it was a long old day. I'm going back tomorrow at 10am, so 3 weeks after my first treatment with him, it's come round very quickly! I already have a 3rd lot booked in before Christmas on the 17th at 12 as well. I don't know if I'll be having exactly the same places done next time.

I will let you know how my second lot goes :-)

Katie x

Update!

Hello,

Just a thought I'd post a little update on what's been happening! I had a really lovely Summer once I finished my last round of Prolotherapy treatments in June/July, may have slightly over done it a little in my enthuasim! I certainly made the most of the warm weather this year, especially as I know that is the time my joints feel at their best. I caught up with my friends, had some BBQ's, went out for a few lunches and I had my birthday at the end of July and I managed to go out for dinner on the evening.

Here I am on my birthday!
 

 

I have also been doing well with my jewellery making business. I sell handmade jewellery on Etsy and I hit 100 sales this September which was very exciting!

https://www.etsy.com/uk/shop/MyBeadedTreasures

So as those of you who have read my blog before will know I have had some Prolotherapy previously this year. Since January I've had 6 treatments on my left shoulder as that is the area I have my worst pain. I had 3 lots on the front and 3 on the back. I am happy to report that it has most definitely started to respond and feels much more stable, its been clicking a lot less and I feel like the spots where I have had the injections feel a little less painful. However I do still have a great deal of pain around that shoulder and am keen to continue Prolotherapy in the hope that it will continue to improve - ideally all over body.

Unfortunately however I will not be having anymore with my current practitioner. In a nutshell he is being very difficult about treating me as a 'hypermobility syndrome' patient, it's been like crawling up a very steep hill trying to get the treatments I've had so far from him and at the last (rather frustrating) consultation it seemed like that was the best I was going to get! That coupled with some very negative consultations and some unnecessarily rude comments made me decide it was time to look for someone else.

I've made an appointment to see a new Prolotherapy practitioner in London, East Sheen this Tuesday (tomorrow) afternoon. I was recommended him by a lovely girl called Becky who contacted me through my blog and is having treatment with him herself. Apparently he treats many other Hypermobility sufferers and believes it is really helpful for us so that's really positive. He sounded really sweet on the phone. The only main downside is the distance as I find travelling really difficult. It could be worse though, should only take us a coupe of hours to get there traffic permitting.

I'm feeling really nervous as by the sounds of it he's willing to do some Prolo in the first consultation if I'm okay for it. I always feel anxious about starting from scratch with someone new again, I'm feeling quite emotionally fatigued from everything this year already! But I'm really determined to keep going with this as I now know it is making a difference to me.

 

Katie x

Latest Treatment and a Surprise TV Prolo Mention!

Hey,

 

Prolo part 2 is now over! The last treatment was quite tough, my shoulder felt really angry for a while and it has taken me some time to get over it but I'm feeling almost back to normal now. He always seems to do a little bit more on the last one I think just to cap it off! I don't have a follow up appointment until September now so that'll take me up to the full 12 weeks of 'healing time'. I'm just going to try to relax and enjoy my summer now free from hosptials! Plus it's my birthday next Tuesday so I have that to look forward to!! 

 

I'm a big fan of the TV series Pretty Little Liars and when I saw this clip of this weeks episode I was surprised to hear Prolotherapy mentioned! I've never even heard it talked about on TV before let alone on my favourite TV show. I know Prolotherapy is more well known in the US than it is in the UK but it's great that the writers obviously looked into it enough to put it in the show.

 

For those who don't watch Emily is a swimmer who has injured her shoulder (after almost being run over by -A) and she may need surgery if she still wants a college scholarship and a career in swimming.

 

Pretty Little Liars - Season 4 Episode 7

 

It's really exciting to hear it being recognised as a treatment option instead of surgery, maybe a few people will goggle it after hearing about it on the show and fingers crossed it'll raise some more awareness.

 

 

Katie xx

2 down 1 to go...

Hi all,

Just a short update for you today! Well I have I've now had 2 out of my 3 treatments on the back of my shoulder. 

I asked for a little extra local anaesthetic this time to see if it helped numb the sensation a bit more. I'm not sure if it made much of a difference to be honest it still felt the same having it done except I felt quite woozy when I sat back up again, but that may be because I'd been lying on my front for quite a while plus I may have over inhaled on the gas and air a little bit!

So just one more to go and then I'm done for the time being! Then hopefully I can enjoying this lovely weather we've finally been having here in the UK. Anyone who has chronic joint pain will know that the warmer weather definitely does help ease the pain and I can usually manage to do a few more things in the summer.

Thanks for all the supportive comments on and off the blog! 

Katie x