Quote:
Originally Posted by en bloc
Raynaud's and SFN present very differently. Whereas you may have burning and such with your SFN all the time, the Raynauds is more specific to temperature changes. So the pain and color changes are during the time when your hands are exposed to the cold. Typically, they turn white when cold, then blue when oxygen is low, then red when the blood returns...in this cyclic pattern. Yours sounds more like typical SFN, not Raynaud's...which is a good thing (not to have SFN, but to NOT have the Raynaud's on top of your SFN).
I think your vascular changes may be a clue to your SFN...and the root cause. Has anyone explored this?
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This is so helpful Enbloc. No I don't think this has been explored at all. I did ask a neurophysio who was conducting an EEG on me last year, whether they test neuro responses to temperature changes here in Scotland, but she was unaware of this kind of thermo testing that I've read about elsewhere. My rheumatologist quizzed me about this supposed Raynaud's and didn't look convinced. I'm unconvinced too but the Erythromelagia caused by these calcium channel blockers confuses me still further.
I mean how is it possible to be sitting here in a cozy living room with a hot face the colour of a beetroot while having feet that feel like ice blocks despite two pairs of socks and slippers?!
It doesn't add up does it?
Apart from once a few years ago at the start of an RA flare up when my fingers turned bloodles white, the only time I notice any colour change to digits is when I get into the bath and the same thing happens with my toes always. Then the burning usually takes over. I can't seem to find any middle ground at all these days. I will explain this to the neurologist when I finally get to see one again - presently I'm a non-urgent referral.
I'm also finding the proprioception issue you mentioned very troubling because my toes and pads are increasing numb 24/7 these days. Meaning I keep getting into spins and losing my bearings all the time
So what kind of explorations are you thinking of and what might the temperature problems signify?