Hi all, on a similiar theme to some other threads but my thighs often turn deathly purple recently, more a purple white than deep purple- I dont mean livedo reticularis laciness but more the entire skin is purpley white. If I massage them and rub them the normal colour comes back for a short time. They tend to be like this when Im stood up.

Does everyone with diagnosed SFN throughout their legs get this? Is this only for some of us?

Ive probably asked before - has anyone ever improved in terms of pain? Has anyone noticed that with this improvement there is a return to more normal skin colour?

Its making me so depressed seeing the physical changes in my legs. I can't even hide it well with clothes as the shape of them has transformed now that all the muscle in legs and bum have shrivelled away disproportionately. My shape just looks like a melted candle, haha. Got to try laugh.

Sorry to be a whiner today. I'm having one of those days where it is just all too much. I feel so old and Im still young so this is really too much to manage emotionally sometimes. I am crying alot at the moment watching the changes happening so quickly.

Hi Joanna. My toes and fingers sometimes turn purple white when they are cold, which is often but I've never had it extend to my legs. My only thought would be (since it sounds like circulation) have you tried keeping your knees slightly bent when standing? I think this is something they have soldiers do because standing straight can effect your circulation. I understand your depression. I was there last week. This disease is so unpredictable and most of us don't get to the bottom of what has caused it. Just when I think I've made progress something happens the next day to erase it. I am sorry you are sad and hope you'll feel better soon.

So sorry about how you are feeling and looking.
I have SFN and it is everywhere.
Yes, my feet get purple someones, usually when sitting.
They also look different after my symptoms started.
Hope you get some answers and improve.
Suffering is so difficult.

I'm so sorry your feeling so down. We all get like that sometimes. I just always try to make sure I don't let myself stay there for too long. Maybe a day or so then I make myself get up and get going. This pain is really a lot to live with so your not whining. Your just saying how you feel.
My legs haven't turned purple but my feet do a lot since I've gotten SFN a.
I hope you have a better day tomorrow!

I am sorry you are feeling down mentally as well as physically. One of the common themes is to excersize to tolerance. If you can get a stationary bike and spin until you can't stand it anymore, that may improve your circulation. I apologise if this suggestion is rediculous as it is hard to see your situation over this computer. I do not have SFN but at one time my pain was at a level to prevent sleep and summon depression. One sage that I read once said that your pain will be, over time, changed and replaced by something else. That is like saying if you don't like the weather hang around for a bit. So, yes the pain will change,move,lessen here worsen there all the while you are getting tougher and more able to cope. Don't worry about bitching, I hope that is not a foriegn word in the UK. We all have to overcome a sense of loss in order to move forward. This has no time limit but I suspect that loud and vehement bitching may shorten the schedule. I had a thing called Amyotrophy which was a muscle wasting fast paced nightmare with the aforementioned pain also. I was astonished that a person can have several things go wrong at the same time. At least with the muscle wasting, it had a "critical phase" that ended about six months or so. Hope you are still able to excercise to tolerance and do what you need to do in order to make it to the next day as that day may be the one that makes up for a bunch of bad ones. Good Luck, Ken in Texas.

Thanks all for your replies :-) It's a real comfort to know other people understand.

Ken, you are right, I am starting physio and physio hydrotherapy every week in attempt to try work on my leg muscles and also get blood pumping. The worse this gets the less I want to do anything like that but I'm going to fight. I have got to get an excercise bike, I think this is the best thing I could do. :-)
You have mentioned the amyotrophy before, I do wonder whether something similiar is happening with me.
Thanks again :-)

Save enough strength to get out of the pool. I didn't and had to lose what little of my dignity was left when they hoisted me out of the water like some dolphin rescue. Search the Amyotrophy, I don't think it makes any difference except for the comfort of the "critical Phase". Ken in Texas.P.S. I "spin" at least 5 times a week for 15 min. I fear once a week is short of the mark, respectfully.