"I think she does have hypermobility syndrome, or Ehlers-Danlos Syndrome- hypermobility type (previously Type 3 Ehlers-Danlos). The nomenclature can be very confusing, as terms /diagnosis are often used interchangeably". "It can be very difficult to differentiate between joint hypermobility syndrome and Ehlers- Danlos Syndrome (hypermobility type)."
This ties in with what Ehlers-Danlos Association told me "Hypermobility Syndrome is generally considered to be the same condition as EDS Hypermobility Type".
He recommends that I have an MRI of my lumbosacral spine and pelvis "to look at areas of abnormality" as well as an echocardiogram. He has referred me back to the NHS for this as he is aware of my financial situation.
I now await the letter from the NHS Consultant, which I know will be different again!
None of this changes how I move forward though. I am trying the Nortriptyline tablets to improve my sleep. Which in turn will hopefully improve my pain, and/or tolerance of it.
I will continue regular exercise and relaxation.
I will continue with pelvic floor exercises.
I will try Cognitive Behavioural Therapy (CBT). This is meant to help me manage chronic pain, and retrain my brain which is currently wired up to receive and act on pain signals inappropriately. This is according to the second Rheumatology Consultant I saw anyway!
I will have the MRI and echocardiogram just to ensure nothing else obvious is being missed.
I know this is the problem when one sees so many 'specialists'. They are obviously going to give different opinions, usually a diagnosis that ties in with their area of expertise.
Ultimately all I have ever wanted and been striving for is to live a pain free existence. Seeing so many people does not make me a hypochondriac, it shows how desperate I am to get some answers and solutions. Anyone who judges me should try living with this pain for a while, then judge me again.