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

Prolotherapy

Hi again!

So here we go, my first post post on Prolotherapy, which is the main reason I wanted to start this blog. I wanted to give an honest and informative account of what the treatment is like, how it affects me and most importantly if it benefits me and my life! Hopefully others will find this interesting and helpful.

After deciding not to go ahead with the operation I was browsing on some of the Hypermobility websites and I came across something on somebody's blog called Prolotherapy. I hadn't heard of it before and was curious to find out what it was. I spent several months researching it, became a little OCD to be honest! I read a ton of articles, personal experiences and talked it all over with my family, friends, doctors and physiotherapist. Thanks to the members on the Hypermobility Forums for some of the personal stories which I found very helpful to read. Prolotherapy works by stimulating the body to make new fibres, which are laid down within the substance of the ligaments, thickening and strengthening them. To me this seemed logical and exactly what I needed to stabilise my loose, clunky joints!

Although (with a great deal of hard work) I have made some progress over the last 3-4 years with endurance and fitness levels, I feel like I've hit a wall with my progress now where basically if I try any harder and do more I just injure myself e.g trapping nerves, muscle spasms, tendonitis etc. So I really want and need something else to help now and to improve my quality of life.

Prolotherapy:
 
Prolotherapy is an injection therapy, where the sclerosant solution is injected directly into the ligaments and intentionally causes controlled irritation. This inflammatory response increases the blood supply to the weakened area, stimulating the tissue to heal and regrow new connective tissue thereby stabilising and strengthening the joints, ligaments and tendons. 

The great thing is that it are only minimal side effects similar to any other injection such as bruising, soreness and some bleeding as oppose to the operation which has a massively long recovery period and could potentially have made my pain a lot worse or even early onset osteoarthritis. Prolotherapy is a natural, safe, minimally invasive way to take care of chronic pain when surgery is not an option, cortisone shots are ineffective, or physical therapies are just not enough to help.

It is currently not available on the NHS (apparently there might be one Doc at the Birmingham hospital doing it on the NHS) only Privately but I was directed to the list of Private Practitioners. The way I understand it is that although some Doctors have tried, there isn't the funding available for clinical trials on Prolotherapy here in the UK. My Consultant Rheumatologist referred me to our most local practitioner at Oving Clinic who he also knows well.

The appointment came through really quickly (but then I'm not used to the private system). The 45 min consultation was £145, I wanted to make the most of the time so I did my own case history for him (yes, I am a little obsessive) with everything I thought was relevent over the 10 years, and one of those physio diagrams shading in the areas where I have pain. I think he was pleased I did all that though. After talking to and examining me he said he thought trying some Prolotherapy on my most painful area, my left shoulder, would be a good idea to start with.

My Pain Diagram

Shoulder and Back Pain

 

I have a block of 3 treatments booked in every fortnight, starting on Tuesday 15th Jan, to start with which is costing £337 each (ouch!), and I will have a follow up appointment and then wil probably need another block of 3. It is expensive I guess but you're paying for his time, skill and also it's done under x-ray guidence so you're paying for the equipment too. Like my Mum says, "if it helps to make a difference to your pain and give you a better quality of life then it is priceless!"

I've been told not to take any anti-inflammatory meds during and directly after the injection treatment as of course it would defeat the object of the treatment - to CAUSE an inflammatory response. So I've stocked up on Paracetamol!

I am just opting to have a Local Anaesthetic before I the injections, but I could also have Entonox Analgesia (gas and air) or light Sedation as well. I hope that's the best way to go. I figure if its really painful or I find it really traumatising the first time then I can try one of the others next time. I have read varying accounts on what the treatment is actually like some say it is just unpleasent others say it's extremely painful! I guess it all depends on where you're having it done, who's doing it and how much pain you have there in the first place. I will let you know!

I've been so tunnel-visioned about finding someone to try this treatment on me that now its actually a reality I'm feeling really scared about going through it! So yeah, relieved and yet utterly terrified in equal measure!!

Obviously it'll be different for everyone, if it does (fingers crossed!) work for me that doesn't necessarily mean it'll work for somebody else but if like me you have spent years trying every kind of treatment under the sun it is certainly worth checking out. Just do your research!

So I will post again after my first treatment and let you know how I get on. Wish me luck!!

~Katie

Intro Post

Hello everyone,

My name is Katie, I have Hypermobility Syndrome (sometimes called EDS type 3) and Fibromyalgia. I wanted to set up this blog to document my condition and current treatment and in turn hopefully help others who are going through similar situations. I will be starting a new treatment called Prolotherapy (which I will talk about in my next post) on the 15th of January, I wanted to give an honest account of what it's like and whether or not it benefits me. I will also post all the tips and tricks I've learned on managing pain and hypermobility.

Hypermobility Syndrome:

Hypermobility syndrome is a connective tissue disorder that means my ligaments are weakened/lax and unstable and therefore don't hold my joints sufficiently well, along with various other associated problems. My joints can be easily injured, prone to subluxation (which is what mine do!) or complete dislocation and muscle fatigue develops, as my muscles have to work harder to compensate for the excessive weakness in the ligaments. Consequently this leads to intense widespread chronic pain in the joints. Treatment usually includes medication, light exercise and physiotherapy to help try and stabilise the joints, pain management and lifestyle modification to decrease stress on joints ligaments.

The condition tends to run in families, although I don't actually have any relatives who suffer from it so it seems I'm a bit of an anomaly!

Symptoms:

Joint instability causing frequent painful episodes, sprains and tendinitis when doing activities that would not affect the normal individual

Early-onset osteoarthritis

Subluxations or dislocations, especially in the shoulder

Joints that make clicking noises

Knee pain

Back pain, prolapsed discs or spondylolisthesis

Frequent Headaches and Nausea

Susceptibility to whiplash

Increased nerve compression disorders (e.g. carpal tunnel syndrome)

Do not respond well to normal doses of anaesthetic or pain medication

"Growing pains" as described in children in late afternoon or night



The Beighton score of which I score 9

I have suffered really badly with chronic pain in most of my joints for about 10 years (since I was 13) but was only officially diagnosed with Hypermobilty Syndrome fairly recently my condition aways being described as a rather vague 'Chronic Pain Syndrome with fatigue' and elements of hypermobilty were only mentioned by the Doctors.

I have pain in my left shoulder and neck, back and sides/ribs, knees, elbows, wrists and hands, foot arches, hips and ankles (loooong list!). However my left shoulder and back are, and always has been the worst. The pain has become very debilitating and life limiting. I am pretty much homebound and rely a lot on my Mum and my family to help me with everyday life. The lack of independance can be really frustrating!

I've tried so many different things to improve my condition over the years:

I've seen countless doctors, physio's and occupational therapists, I've tried all sorts of medications, cortisone injections, hydrotherapy, massage therapy, reflexology, psychiatry, chinese medicine, homeopathy...you name it I've tried it bascially!  

I had regular rehab stays at the Middlesex Hospital in London from 2004-2005, where I had many tests, Physiotherapy, Occupational therapy and Psychology. I was going every 6 weeks for fortnighty stays. However the constant traveling (it took 3 hours each way) and hospital atmosphere over such a long period of time was exhausting for both me and my family so it was decided I should continue my rehab back at home with the local hospitals.

I joined my local gym and do physio exercises every day at home. I believe this has definitely all helped to stop my condition deteriorating too much but it hasn’t made a great deal of difference to my pain levels.

I've been having specialist physio on my left shoulder for a couple of years now due to it being so incredibly painful and I kept trapping a nerve in that area. I cannot sit/stand/walk or do any normal activities for very long without crippling pain and desperately needing to lie down and have it supported.

Apart from some increased strength in that area however I haven’t noticed any significant change in my pain levels or in the amount of things I can do. Even though my physio is still continuing the sessions with me he is not sure if he can help me much further than he has already at this point.

I was referred by my Rheumatologist to a surgeon with a view to possibly having an operation on my shoulder to tighten the capsule, hoping that this might decrease my pain levels. I had an MRI Arthrogram which showed an enlarged capsule with a great deal of elasticity. However I was only given a 60% of success with the operation which I didn't think so great. There was also the general anaesthetic, 6-8 weeks in a sling and 8 month recovery time to consider! And even then the prognosis for people with Hypermobility isn't great. I went for a second opinion at the Reading Shoulder unit in September. After a full examination it was agreed that an operation would not be beneficial for me at this time.

Hence why I've decided to try this new treatment called Prolotherapy but I will talk about that in my next post as this one is already very long!!

Please feel free to comment or if anyone has any questions I'll be happy to answer them.

Thanks for reading!

~Katie