Hi,
It certainly sounds like POTS to me, I HAVE been diagnosed and I know the freezing limbs all too well, as it brings increased pain. Indeed I am sitting here in the midst of summer, with thick support stockings, legwarmers and long trousers, typing in fingerless gloves!
As for your trouble bending down, my symptoms are very much ‘position’ related. I had a reason which brought on my Craniocervical Instability, in that I had an almighty whack to my head but, knowing what I do now, that the head ‘joint’ is totally reliant on ligament integrity, if you have the ‘stretchy’ type of EDS with weak ligaments, there’s every possibility that you too have CranioCervical Instability (CCI). This is what could be causing your symptoms of POTS, especially if you have a ‘low-lying hind brain’ (sometimes referred to as low-lying cerebellar tonsils, or cerebellar ectopia) that’s crowding the brainstem.
Just leaning slightly forwards can affect your Autonomic Nervous System if this is the case. I use a Philadelphia collar 24/7 to help ‘keep my head in a good position with my neck’, it helps although it doesn’t solve the problem totally, I have to be very careful too.
My advice, do as much as you can in a seated position, so that your head is straight forwards; avoid holding your head in ‘flexion’ if at all possible, as this will probably aggravate it; delegate – only do the tasks you can do without becoming symptomatic, get others to carry out the ‘triggering’ tasks – i.e. get people to pick their own things up, or use a ‘grabber’ to avoid bending.
You look after yourself – even when no-one else is!!!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!