How to know if it's Raynaud's or SFN?
 

This is something I've never understood. Initially I was told by my GP that my parasthesia/ burning/ wet legs sensation were most probably due to secondary Raynauds. A Professor of connective tissue diseases agreed with my GP's suggestion and I was started on a calcium channel blocker, Nifedipine, with vasodilation in mind. It worked to an extent apart from the flushing and swollen ankles and the occasional dizzy spell when my BP dropped. However I started to realise that it was causing a severe follicular rash on my legs and as it was summer I stopped.

The symptoms of whitened toes and icy cold, wet legs and burning in hands and feet returned in winter and I have just assumed this was due untreated Raynaud's. However I don't get the white fingers or classic Raynaud's skin discolouration and no amount of socks makes any difference because the cold seems to be from within rather than affected by an external source.

I have now started taking Amlodopine for my hypertension and tonight, five days after starting it, my face is having a grand flush and yet my feet are like icebergs. It is very cold outside here I acknowledge but I'm freezing and burning despite rugs and a fire and feeling totally confused by my mad circulation. Im wondering how I can know whether my circulation issues are part of my small fiber neuropathy or are vasospastic in origin? I feel that Raynaud's is probably a red herring for me.

Oh and how exactly do these two closely related conditions differ from one another can anyone explain? - preferably in layman's terms!

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?

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?!:mad::confused: 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?