I had a Personal Independence Payment medical review this week (more of that another time!). My GP had requested a home visit, mainly as my dysautonomia/fainting is so much worse, but I was merely given another appointment a little nearer to home.  As it seemed near impossible to tie up the DWP who would have received the letter, with the review service (formerly known as ATOS) we decided between us that Duncan would try to get me there, but the GP was adamant not without all the letters that she had been sent recently.  Half a tree later we left her surgery – and this was just the correspondence since the beginning of the year.

The day after the assessment, I received a copy of the letter dictated by my new rheumatologist to my GP.  Lovely man, but the person who he describes in this letter doesn’t appear to be me.  In fact she is completely at odds to the lady described a month earlier by the orthopaedic consultant, after a dislocation that required a trip to A&E!  The history of my shoulder pain was wrong, and apparently I have “a reasonable range of movement” …”with some discomfort” – ahem, I am hypermobile with very stretched ligaments & tendons so everything moves in every direction and I was actually referred for PAIN management.  Apparently my “other joints are normal” and I “really know how to manage my hypermobility syndrome”.

The ortho consultant said “she has been having pain in that shoulder for some time and was seen by my colleague 2 years ago…” and “on examining her shoulder it moves through a reduced range and her x rays show progressive glenohumeral joint arthritis, with a marked difference from 2 years ago”.  He goes on to say “Unfortunately Claire has a very difficult problem to solve. She has EDS….& has developed arthropathy within the glenohumeral joint”.  I was told 2 years ago that if I were 30 years older I would be whisked in for a shoulder replacement……this time the consultant could see a huge deterioration on x ray, but again explained that a shoulder replacement with my EDS is just not really an option as my ligaments & cartilages are so stretched.  A shoulder replacement would not stand up to recurrent dislocations!

Pictures from Google search

So, the thing that the two specialists agree is that I have a really good knowledge of EDS and both do recommend conservative treatment with physiotherapy – again!  The physio with expertise in hypermobility syndromes who the rheumatologist recommends is out of area; my old physio who works with the ortho consultant is no longer able to see me on the NHS as he is a Consultant physio……..

This is the reality of a condition that affects multiple body systems with no one person leading the care!  So now the search for a physio, who understands that I can’t be “fixed” but need ongoing rehab,  is ON!!!