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