Sunday, 26 December 2010

End of 2010, where I'm at.

Its been quite a year bendy-wise.

I thought I'd do a quick recap just to see how far I'v come in just one year.

*Xrays and Mri of spine show curvature of spine and degeneration of SI joints :(
*Assessed for my 1st wheelchair - sad times.
*Start investingations for Crohns Disease - come back clear - Yey!
*GI dr and EDS dr discover my Gastointestinal system is now affected by EDS.
*Reffered to endocronologist for suspected thyroid damage from medication
*Begin physio and Occupational Therapy at Leeds.

*Recieve my wheelchair. Amazed how much freedom I now have. :)
*Getting physio back at hartlepool. knees and hips getting weaker. Walking less.
*GI nurse and EDS dr agree lower GI system failing. :(
Start wearing ankle splints and hip belt to help walking.
*Using wheelchair indoors at least 3 times a week now. Standing becoming difficult.
*Pain med review no.8

*Pain becomes much worse.
*Pain meds review no.9. Introduce Neuropathic pain medication
*Start working with new physio who is keen to learn about EDS
*Try accupuncture for pain which triggers major pain flare
*Reffered for hydrotherapy
*Stomach gets symptomatic. Begin part-liquid diet.

*Begin Hydrotherapy with great success. Pain reduced and core stability improved.
*Major hip dislocation trigging escalating hip and pelvis instability
*Hip continues to dislocate and subluxate evenutally causing impingement and nerve damage.
*Referred to Orthopaedic surgean for both hips.
*Walking deteriates to point of needng chair outdoors full time and indoors most days. Unable to self-propel outdoors and sometimes indoors. Refferd for powerchair assessment.
*Begin fainting and admitted overnight after paramedics called after bad fall. Blood pressure very low and heart rate topping 143bpm when standing and 110 sitting. Dr on duty suspects Postual Orthostatic Tachychardia Syndrome. Rheumy agrees continueing readings and symptoms suggest autonomic dysfunction and requests further tests with possible reffereal for POTS testing.
*Rheumy requests refferal to Prof Aziz in london for GI isssues
*Endoscopy booked for 5th January for upper GI issues.
*Reffered to pain clinic.

Looking back its clear in which direction my EDS is heading for now. However I have found that even though my condition may have become worse over the past few months, my abiltiy to cope with it and the amount it affects my ability to get on with my life is very differnt to what it was at the begining of the year.

I wish all my blog readers and fellow EDSers a wonderful and healthy 2011!



  1. May I ask how old you are?
    I have HMS and am only 21 (nearly 22), I got diagnosed when I was about 18, I'm petrified of how long it's going to take my body to deteriorate. I'm dreading what it will be like when I'm older, and the condition worsens and causes arthritis, because I feel it's bad enough now and I don't know how I'll handle it. xx

  2. I have just turned 30, but Charlie you must understand that eds/hms is not a condition that has a set pattern. there is no rule that says yours will get worse or your body with deteriate. eds/hms is a very unpredictable condition and this is one of those reasons why it is hard to diagnose and hard to understand.
    It doesnt follow a set pattern like some conditions nor does it even follow similar patterns in same families! So even if your mum or brother has eds/hms you can't really tell how your's might turn out by watching theirs progress.

    eds/hms is ver personal to each person It affects us all very differently. You won't find 2 people with eds/hms who'e stories are even close to being similar.

    In terms of deteration again there is no reason why you should be worrying about this. You don't know what your condition is going to do. Alot of people see a big improvement in their eds/hms once they hit adulthood as they start to naturally stiften up and their hormones become more balanced.

    The early twenties is a tough time when you are trying to figure out who you are and where you want to go in life. Add something like EDS/hms ontop of that and you give yourself all kinds of extra pressure. But you have no idea how this condition is going to affect you or your life.

    I could quite easily be in a much better position in a few years time. But i do remember being where you are now and being so afraid of just getting worse and worse. But that doesnt benefit anyone and many of my EDS/hms friends have gone on to prove that just becuase you are having a bad phase now doesnt mean that a brilliant phase isnt waiting just around the corner.