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

Round 2 Starts...

Hello hello,

So I've started my second round of treatment. He did treat the back of my left shoulder in the end and I felt happy about that decision because now we will hopefully be stabilising it all round.

I managed to get around the lying on my front problem! They had a U shaped cushion there and I lay with head on that, so I didn't have to have my neck cricked right over to one side. Just enough to ram the Gas & Air tube in my mouth! So the lying down part wasn't as uncomfortable as it could have been.

To be honest I did find this treatment really tough! It went on for longer which made it more difficult to bear, I was biting down on the Gas & Air tube so hard! Perhaps because there was a slightly larger area that needed to be injected with it being the back of the shoulder so it took more time. He told me afterwards exactly where he had done the Prolotherapy. It was kind of in an upside down Y shape I guess that's the shape of the ligaments in that area.




This is the area that was injected



I might ask if I can can have a little extra anaesthetic next time! I'm not sure if I'm able to have any more or if that's just the maximum they're allowed to give but it's worth asking.

Wow 2 weeks have gone quickly! I can't believe I'm due back to do it all again tomorrow, at least I'll have two out of three under my belt. I've got a pile of new DVD's to watch while I'm resting tomorrow though, courtesy of my friend Lucy - thanks for that! ;)

 

Katie x

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

Prolotherapy Treatment 3

Hi everyone,

Prolotherapy treatment 3 is now under my belt and I have to say it was a toughie! Hence why this post is a little later than planned (sorry about that!). I guess because the same ligament has been injected twice before already so its extra sensitive. Had the gas & air again which definitely helps. I am glad I'm having a little break now that the first 3 treatments are over and hopefully my shoulder is doing everything it should in the meantime!

I find it interesting how the Doctor does the Prolotherapy. I was expecting lots of little needle incisions up and down the front of my shoulder where I was being treated but there is just one point where the needle goes in and then he kind of angles the needle up and down the ligament underneath the skin instead. First with the Local Anaesthic which is sort of pushed in and around the area he's going to be injecting and then a few minutes later he starts injecting the Prolo through the same place. It's kind of a sore pulsing feeling as the needle is angled and the solution injected along the ligament for around about 1-2 minutes I think.

I have a follow up at the beginning of April roughly 6 weeks after my last (3rd) injection. So my doctor will be able to see how my shoulder is doing and probably book in the next block of 3 Prolo treatments. Hopefully he'll be able to see or feel some kind of improvement even if I haven't yet!

I have heard that in America some Prolotherapists treat people with Hypermobility Syndrome and EDS Type 3 by admitting them to hospital and one day treating the whole of the front side of the body and the next day treating the back. Then bringing them back for the same again every few weeks. Please let me know if anyone has had this done, I'd be interested to hear about it because to me this sounds horrendous!!

Will be updating again soon.
xxxx

Prolotherapy Treatment 2

Hello,

So I've had my 2nd prolo treatment and I felt that it went a bit better than last time, I knew what to expect so that helped. It still felt pretty much the same pain-wise even with the gas & air, which I started breathing in before he put the anaesthetic in. I was hoping it would be some kind of magic that would take all the pain away! It just made me feel a bit light headed like I'd had a couple of drinks or something. It did however give me something else to focus on, it helped me concentrate on my breathing and I bit down hard on it during the injections! So I will be using it again.

I did find it difficult holding the gas & air tube up to my mouth though as my elbows become extremely painful when they're bent up for long especially if I'm holding something e.g a book. So the nurse who was looking after me held it up for me while I was having the injections done.

I had a couple of days resting like last time and the side effects were similar to last time as well. I think part of the nausea might be due to the extra pain and stiffness in my shoulder. I do often suffer with nausea when my pain is really bad or if I've 'over done it', especially the nearer the pain is to my head e.g neck and shoulder pain makes me feel more sick than the pain in my legs. Again surprisingly minimal bruising and markings on the skin from it which I'm impressed by, I was expecting to be covered!

It takes 12 weeks from the last injection for the full growth process to complete and then I'll have a follow up appointment (for the doctor to see if there are any improvements) and will probably need at least one other block of 3 treatments on my shoulder after that. Its a long old process!

I am taking Arnica tablets to help the healing process, as HMS suffers supposedly don't heal that well/efficiently, and I was recommended them by a friend. Whether or not they actually do help I'll probably never really know for sure but it won't do any harm so I thought I'd give them a go.

So that's 2 treatments down 1 more to go, for the moment! I have my next one this Tuesday morning (19th Feb) and I'll update you again after that.

~Katie