Hi all - After my recent post on elevation I was reminded of a recent doctors visit were after sitting in the waiting room with my legs down they were a deep purple ( as usual in this situation) What did surprise me was that when I pointed it out to the doc he seemed a bit confused and asked if this burned. He is a cardiologist ,but he seemed unaware of the deep purple kind of swelling reaction as opposed to the superficial bright red burning or indeed that with me ,they can occur separately or together. For me it seems the deep purple feels noxious like a deep pressure threatening to explode my feet. This to me is the vasomotor problem relieved by elevation; while the bright red is the burning.
Does everyone get these two types of response ?
Any doctors adding their two cents worth?
Importantly what colour nail polish goes with purple?
Yes! Mine do the exact same thing, always. I tend to have more of the deep purple (almost black sometimes) and then usually followed by the red burning. I couldn't have described the painful sensation any better than you just did. My feet feel like they're going to fall off :(
I get the deep purple feet after sitting awhile. I didn't connect it with EM. I thought it was poor circulation in my legs, even though I have been to a vascular surgeon and was told the circulation in my legs was good. Now you have given me food for thought and maybe relief in my thinking, but not in my feet. <grin> And yes the purple feet doesn't happen when I sit in a recliner. Most of the time even if they aren't burning (cool to cold) or purple, my feet still feel tight (like socks too small). It seems the tightness never goes away. That in itself is very annoying, but not painful at least.
As for nail polish, I would go for sparkly.
Pat in NH/US
Yes!
I notice often that if I stand still or sit with my feet down that my toes will be purple-ish, separately from a hot flare. I have assumed that this is blood pooling because of circulation issues, but have not been told anything concrete by any of the docs I've shown my feet to. It freaks me out a bit, to be honest. I get a combo purple duskiness + red hot flare from standing in the shower.
I don't think the circulation has been "tested" in my legs/feet - Pat, how is this done?
As for nail polish - what a struggle! Haha. Reds, pinks, nudes, and greens can all be thrown out the window... I have found my best option to be cool-toned gunmetal grey like Zoya's Freja. Their color called Pasha is also a fave - it's as close to a nude as I can go without making the surrounding skin look redder. Also, I don't usually like sparkles, but their "pixiedust" polish in London (silver/foggy grey) is lovely (and distracting!).
The same thing happens to me. Sometimes this even happens to my hands and fingers. When I was younger they said it was poor circulation. I had my legs checked for poor circulation but they said everything was fine. At my age 73 I have heart problems and I thought it might be that, however my Rheumatologist told me that was one of the symptoms of EM. He has given me some medication that is helping with the burning. Cymbalta is the name of it. It has really helped with my standing and walking but I do have to sit in a recliner to avoid flares. I don't have toenails so can't recommend a polish. Blessings to you, Myself
Hi, my toes (especially the baby toe and the next one in) turn purple when I'm sitting and mostly at night. My daughter says my feet look dead. My feet aren't necessarily burning that bad when I see them purple. They can even feel cold - very weird.
Libby
Several years ago an ultra sound was done on my legs to see if I had a blood clot because my feet were very swollen and thankfully I didn't. That doctor (pcp) gave me water pills and recommended compression stocking which I only used for a short time. They were too hard to get on and off. After a few days the swelling went down. I think eating too much sugar makes my feet swell.
A few months ago when I went to the vascular surgeon, he just felt my feet, ankles and legs, and said he could feel a pulse and there was no need to do the ultra sound. No point in the added expense as my circulation was good.
Pat in NH/US
LibbyK said:
Yes!
I notice often that if I stand still or sit with my feet down that my toes will be purple-ish, separately from a hot flare. I have assumed that this is blood pooling because of circulation issues, but have not been told anything concrete by any of the docs I've shown my feet to. It freaks me out a bit, to be honest. I get a combo purple duskiness + red hot flare from standing in the shower.
I don't think the circulation has been "tested" in my legs/feet - Pat, how is this done?
As for nail polish - what a struggle! Haha. Reds, pinks, nudes, and greens can all be thrown out the window... I have found my best option to be cool-toned gunmetal grey like Zoya's Freja. Their color called Pasha is also a fave - it's as close to a nude as I can go without making the surrounding skin look redder. Also, I don't usually like sparkles, but their "pixiedust" polish in London (silver/foggy grey) is lovely (and distracting!).
Hi tizzy.
I too have this problem and try to always sit with my legs up to minimize it. After doing a few dishes yesterday my feet were both people and red. I had red burning from the activity but some toes were still purple. I assume from the standing.
I have had my legs checked with ultra sound and they said they look great and no problems. Only problem is there’s a
problem!
I have had a DVT in my right leg and about 8 months later, only 2 after stopping coumadin I got another DVT in my left arm and I now take coumadin forever.
Just because the ultrasounds and the blood tests all come back normal and you can’t have a problem with your circulation doesn’t mean you don’t. Problem being whatever causes this doesn’t show up on any tests! !!!
Thank you for the great post. It is interesting to see the many faces of EM.
Take care,
Alina
Hi Tizzy.
I am sorry it has taken so long to reply. I have written you twice in the past couple of days but I have had to stop before I could complete and send it!!!!
The interesting thing is the first symptom I ever had was a DVT in my right leg. This happened about 3 months before the burning began. It all started while living a normal active life. I had mild pain in my inner thigh upon standing and terrible back pain on one of my days off from work. I work as a flight attendant but I have been informed this doesn't cause blood clots because I am up and working during the flight not sitting like a passenger. I worked as a flight attendant for about 15 years before this started.
Any way ,I had this weird mild pain in my thigh and terrible back pain. I didn't do anything to cause any type of pain so I just brushed it off and didn't think much of it. The pain in my leg would go away when I put my feet up but would return immediately upon standing and walking. I went back to work and went to put on my work boots and discovered I couldn't zip up my right leg and the pain had started to spread through into my calf as well. I had no Idea a blood clot was a possibility and was just worried about getting to work on time.
I threw on some flats and went to work. I worked for 3 days and decided I would see a doctor if it wasn't better by the time I went home. Sure enough they found a DVT encompassing most of my left leg from my upper thigh to my ankle. I was very active through this so being sedentary was not the issue. They did blood tests and could find no reason for the blood clot and chalked it up to a fluke and decided my back pain must have been an injury I didn't realize I did. They put me on Coumadin and sent me on my way.
Three months later my burning started on my hands then feet and has now spread to most of my body including my Eyes and tongue!!!! The doctors at this point didn't believe my burning and told me to switch soaps and took me off Coumadin after 6 months. Two months later I had a DVT in my left arm. They said that is extremely rare especially not having any injury or condition stopping me from using my arm. Even with EM you can't help but use your arm! Yes I don't walk as much but I still use my arm. After more blood tests and ultrasounds of my veins there is no logical reason for the blood clots.
I have been on Coumadin ever since but I still have the same problems with EM so It doesn't seem to help with my EM but I guess it is always possible that it might be worse without it. My EM always fluctuates so I can't say for sure if it was any worse during the 2 months I wasn't taking Coumadin and that was a few years ago so I really don't remember those 2 months. I just know it hasn't made it stop.
I have started a post some time ago asking if others have had blood clots and nobody said they had so it doesn't seem to be a common problem with us. Maybe people just didn't respond ,I don't know.
Long story long .....I don't know. I can say the best indication of having a blood clot and I felt this way with both of mine was pain that only appeared with use or standing/walking. It gets better with rest and elevation. You may see swelling and warmth too but that happens to us anyway so that may not be the best indicator for those with EM. I my case the pain was not extreme but was painful and always got better when I didn't stand or use the limb effected.
I hope this helps.
Take care,
Alina
Hi Tizzy I have just been reading your blog about clots and Em . I developed a clot in my left arm after having an operation.i was given tests and was diagnosed with Factor Five Leiden . Twelve months later I developed Em so perhaps there could be a link .