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Anyone want to diagnose me? Blood pooling in hands and burning pain

9 replies

Onabench · 20/09/2023 20:58

Struggling a bit here with some symptoms that appeared last year. I started with pins and needles in my hands and feet in September 2022. GP was not concerned but a good range of blood tests done. All good as far as they were concerned but I felt like my b12 was low at 222 so I started supplements. Fast forward and no improvement, so neurology referral, seen in feb, sent for MRI of neck and brain in May. All fine so I was discharged after seeing them once. By the time the MRI came around MRI, the vague pin and needles is now a burning pain in my hands and feet. Worse at night. In July I noticed I had blood pooling in my hands? Red mottled hands whenever my arms are lowered which makes walking and standing awkward as they throb. As soon as I raise them above my heart the blood drains. I mentioned this to my GP and they told me it was raynauds. I said I disagreed as heat makes my condition worse and it is influenced by gravity. The cold actually eases my blood pooling and the throbbing that comes with it.

GP has this week took repeat bloods but basically said I am fine and they will give me medication to deal with the pain. But really? Is that it? I am 33 and they don’t even want to investigate further? I don’t even know what to ask them to look into and google hasn’t helped

is bad circulation causing my blood pooling? Could low b12 damage my nerves so quickly it is effecting my blood flow in my hands? I’ve read about dysautomnia and vein conditions but I am struggling to advocate for myself

OP posts:
MeinKraft · 20/09/2023 22:46

I've seen people discuss POTS in relation to these symptoms, but I'm no expert.

Onabench · 21/09/2023 10:19

MeinKraft · 20/09/2023 22:46

I've seen people discuss POTS in relation to these symptoms, but I'm no expert.

Thanks for taking the time to reply MeinKraft, I have read about POTs but I don’t get issues relating to being lightheaded etc. I know there are other forms of dysautonomia but the NHS website of a bit crap in that area!

OP posts:
Onabench · 27/09/2023 15:54

The blood pooling in my hands seems worse over the last few days and my hands are quite itchy

OP posts:
LaurieFairyCake · 27/09/2023 16:53

Reynauds?

LiquoriceAllsort2 · 27/09/2023 22:59

Could be Erythromelalgia, I have it a little bit and find duloxetine the best to keep the burning at bay.

It is an autoimmune condition that effects the small blood vessels in the extremities.

UnmentionedElephantDildo · 27/09/2023 23:07

Capillary damage (and onset of Reynauds) can both be features of long covid, and are occurring more frequently than they did before 2020

Have you discussed this possibility with your GP?

HelpingFingers · 28/09/2023 00:15

Hello, I've had similar experience/symptoms in the past, @Onabench .
Have you any hypermobility? Any anxiety?
The burning might indicate erythromelalgia, as a previous poster has mentioned - but it's quite rare (i was told), and it could be a bunch of things, none very well understood, in my experience, to be honest. But rheumatologist would diagnose.
I saw loads of doctors of various types (including rheumatologist, endocrinologist, etc etc), all bloods were totally fine until finally I saw a gynaecologist and found that my estrogen was a bit low (in my early 40s). Who knows the rhyme or reason (women's health generally poorly understood, basically), but I started on HRT and then saw a marked improvement.

Mammillaria · 28/09/2023 00:30

Have they ruled out heart problems? Very unlikely, but maybe worth mentioning if you have relatives with heart failure or other heart issues.

SMLSML · 24/02/2026 22:34

Are you still there OP? I'm pretty sure I have erythromelalgia and wanted to ask how you got on?

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