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

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

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

Prolotherapy Treatment 1

Hello to you all,

Thanks a lot to everyone who has checked out this blog so far. I have had over 200 views which is amazing!

So its been almost 2 weeks now since my first Prolotherapy treatment and I'm feeling almost back to normal now! I hadn't been so incredibly nervous about an appointment in a long time! They were really nice to me though, I think they knew how nervous I was. The nurse who was looking after me was called Mandy, she was lovely and very calming. She took my blood presure and briefly talked me through what was going to happen. She had the gas and air on stand-by in case I needed it. I was lying on an extremely high bed under an xray machine. The doctor set up the xray machine over my left shoulder. He cleaned the skin and then injected the anaesthetic into the shoulder joint. He then waited a minute or two for tht to take effect before starting the Prolotherapy injections.

I've been trying to think how best to describe how it felt. I don't think I would say it was horribly painful, I was expecting short sharp pains as the needle touched the ligament. It was more unpleasant, like finger nails down a blackboard/purse your lips kind of unpleasant. At one point I was actually digging my nails into the palm of my hand and I did have a little faint at the end but I think that may have been more down to the fact I was breathing so quickly from nerves!

Bear in mind though that this for me is my most vulnerable area and has been for 10 years. Its extremely painful at the best of times, usually I hate people just touching it never mind sticking a needle in it. So for an area not so hypersensitive it might not feel too bad. I think the actual injection process only took a maybe 5 or 10 minutes, I'll have to check next time (I was trying to keep myself focused!) But it was quite relentless.


This is the area that was injected

I'm going to have the gas and air next time just to get me through it a bit easier and hopefully it'll help me focus on something else too. I'll just take a big inhale at the start before he puts the anaesthetic in. I know it was there on stand-by during my first treatment but I was just so focused on getting through it that I couldn't really manage to ask for gas and air at the time!

Another thing I thought about was that people with Hypermobility Syndrome apparently don't usually react as well to anaesthetics. However I only truely realised that mine had worked for me when I felt it wearing off a couple of hours later and I could feel my shoulder sort of throbbing realy deep down. It wasn't too bad though, I spent the rest of the day cuddled up at home using hot and cold packs on it and taking paracetamol. My shoulder was extremely stiff I could barely lift it for about 48 hours but the pain and stiffness did gradually decrease and by about the 3rd day it was almost back to my normal pain levels. I did also suffer from headaches, diarrhea and extremely bad nausea which I didn't realise were other side effects of Prolotherapy. I guess it's either due to the inflammation or the solution working its way through or a bit of both, again these went after about 2-3 days and really weren't that bad.

Although it was a tough couple of days it wasn't dreadful and for me, I think it'll be absolutely worth every minute if it does help - some pain for some gain for a change! It wasn't as bad as my normal pain can get and it's nowhere near as painful as trapping a nerve.

I should probably have said in my previous post that Prolotherapy takes 12 weeks from the last injection to fully complete it's growth process. This could last up to 5-10 years, which is pretty amazing. I'm not sure if this applies the same for us with Hypermobility syndrome but hopefully I'll be able to test that out! - I'll edit all that in to the previous post in a bit.
 
My next treatment is booked in for next Tuesday the 5th of Feb. I don't think I'll be as nervous next time any because I'll know what to expect now.


~Katie