Near fainting.

[Awil]

When I stand for a while I get purple/ grey feet and knees; pressure around the knee almost feels swollen. I also feel very lightheaded, as if I could faint, unless I start to walk or when it's bad, sit down. Does anybody else get these symptoms?

[cwill]

Check out POTS UK website: Postural Orthostatic Tachycardia Syndrome. My legs swell on sitting with my feet down and go red/purple when upright with no compression. It’s called pooling. See if you recognise yourself.

The test is 10 mins leaning on a wall, in case you feel faint, and taking your BP and HR each minute or so (NASA lean test). I initially tested positive for POTS only before food and drink in the morning and couldn’t stand still but am more severe now such that I can’t sit.

[Awil in reply to cwill]

Thank you for your reply. I have come across POTS in my research.

Do you know if it has a direct link to the b12 deficiency ie. autonomic dysfunction due to nerve damage?

[cwill in reply to Awil]

Interesting. I’m not diagnosed B12 deficiency as the NHS has repeatedly refused to acknowledge my symptoms, but SIs have returned the feeling to my hands.

There is a strong link with Small Fibre Neuropathy for which POTSies are tested, or should be. My consultant is interested in exploring causative factors and/or the root cause thankfully. Many are finding they have positive antibodies, so far the stuff of research, but another autoimmune issue.

Are you hypermobile? We often have hypermobile EDS, MCAS and POTS. See the RCGP EDS toolkit to check on info for all three conditions. This is a great document as a resource written by and for GPs so can be referenced if you need any help from them.