Consultant appointment today. Rheumatology, the purveyors of all things bone and tendon.
I’ve been seeing rheumatologists for about 4 years to try and come to a conclusion about what’s wrong with my sore, bendy, wobbly and fainty body.
Last year I thought we’d cracked it – Generalised Hypermobility Spectrum Disorder and Postural Orthostatic Tachycardia Syndrome (try saying that to paramedics when you’re half passed out…)
It sort of fits. I am quite abnormally bendy (think, putting toe in mouth and leg around shoulder as party trick to amuse some and disgust most)
I am fainty with my heart rate being stupidly high when standing up and only less marginally stupid when sitting down.
My body seems to think doing the washing up is equivalent to doing a marathon. My family disagrees, and gently teases me for my lack of stamina.
But there are odd things that don’t fit.
- Odd tingly, burning sensations.
- Dizziness like hell on earth.
- Having to launch myself out of a bed/chair/car to be sure of getting up.
My rheumatologist is a bit flummoxed by this.
She said I also had ‘brisk reflexes’ which sounded rather good to me! Apparently not.
So I’m trying to stop myself getting caught in the scary dark world of “Dr Google” where everything means death or at the very least total misery.
On the plus side, I did get in to the appointment on time, blood test straight away and had an X Ray all within an hour – fantastic job NHS!
We’ll see over the coming months whether there’s anything to do. For now we’ll plod along as always!