My feet, which are fortunately the only part of me affected, seem to be permanently suffused with pooled blood nowadays.
The only way I can get them to look anywhere near normal flesh coloured is by raising them above heart height and squeezing them down from the toes.
The rest of the time they are either purple to bluish when cold through to mottled dark red when at a comfortable temperature and then of course comes the familiar unvarying redness when in full flare mode.
Just sometimes my big toes will flare which is really odd to look at when the rest of my feet are purple and cold.
So, do any of you still have normal looking feet in between the flares or permanently discoloured ones?
I sort of have normal looking toes when they don't flare, but the skin on my feet is really dry and definitly darker in color -- so similar to what you have described. I have pictures of what my feet look like during flares on my blog (web address below). Sometimes only my big toe flares too.
Mine look nearly normal when they're not flaring, aside from a few permanent red mottled areas. My big toe is the first to flare on my right foot, but the 2nd and 3rd toes are usually the first to go on my left.
HI Tilly, oh the weird looking feet! Mine are normal occasionally, purple when cold (like yours) and occasionally get strange orange streaks across them - very fetching against the purple, you can imagine.
I get this strange whiteness if I press on them - or where sandals rub - as if all the blood has been driven out, and then it comes back a few seconds later. Does anyone else get this?
Gello Frances, ooops I mean Hello:) Must have the gel packs on my mind as that is what I was going to answer first. I got mine online through www.icepacksforless.co.uk Mine are about 10" x 4" - can't remember the price offhand. I'm babysitting tonight, not sure if it's Monopoly or Scrabble with the older ones when the 3 year old has gone to bed. I shall have the gel packs under the table to rest my feet on with the frozen freezer blocks under them to help keep them cold for longer.
I do think stress doesn't help with this condition. We are all under stress with our symptoms anyway and any other stressful situations can't be good. Just when I thought I had reached a sort of plateau with my EM (skin nearly healed, flares almost manageable and reasonable sleep, the last three evenings/nights have been pretty miserable. It is making me out to be a complete liar! So I too am more stressed than I have been for a little while. Having said that, I don't suffer the dreadful and often constant pain that others experience. Mine is more stinging nettles x 10 with a really bad flare. I can also still get about reasonably well though not as far walking.
As to the weird looking feet, yes I have the odd orange streaks and all the other colours of the red to blue palette. And yes I have the white patches. The blood has in fact been pressed out just as you said. It doesn't flow back as quickly as it would normally. I don't have the best circulation anyway and being older it does take longer for the blood to return - but it doesn't do it on other parts of my body. I often stand with my cold foot on my flaring foot to push the blood out when it is flaring to get some ease. This might sound a bit odd, but sometimes during a flare (especially when really tired) I completely forget to do the things that might bring a bit of relief, however temporary. Just stand there like a zombie waiting for things to get better. Next day I think, why didn't I get the gel packs, cold cream, fan or whatever. It just addles my brain!! And don't you just wish that the cold blast of air when you open the freezer door could continue for an hour without defrosting the food? Oh dear, now I'm rambling so I'd best say cheerio. Hope you are finding the site helpful.