Hello all, I wonder if someone can help me, please?
I went for an assessment at the local fatigue clinic yesterday, and was seen by an endocrinologist. He did a quick check of my symptoms (fatigue, generalised pain esp in lower quadrant, IBS, brain fog etc) and said, “I know what I think you have, but I’m not telling you yet.”
Then he did a bunch of physical tests, including what I now realise were tests for hypermobility.
He dictated his letter and my husband took notes - CFS, and Ehlers-Danlos of an undefined type.
I am pretty darned confused! I went in expecting a diagnosis of CFS or fibro, but this EDS suggestion has come at me completely from left field! And it is bothering me rather. He said it was based on my symptoms and also my physique (very tall, very thin) as he has experience of it being sth associated with my body type.
I am *not* hypermobile. At least, not as far as I know. I can do reverse namaste and link hands behind my back, but none of the other tests (fingers round wrist, bending thumb back, hands flat on floor etc) show any evidence of hypermobility. I used to do yoga years ago and was always upset at my complete lack of flexibility!
So I’m wondering how I can possibly have EDS. Isn’t it always characterised by hypermobility? Does anyone have experience of someone being diagnosed with EDS who doesn’t have hypermobility as a symptom??
Thanks so much!