My feet seem to be permanently suffused with blood in various shades of flare pink through to red/purple/blue. They never ever look 'normal' any more. The closest I can get to normal is when I raise my feet up above heart level and allow the blood to drain which takes an age. Howeve, this position makes it rather difficult when trying to get anything done round the house. Having a shower can be rather hazardous and going out prompts lots of curious stares. I also don't get any real relief from symptoms when raising them up either. Anyone else have the same problem?
I have also ceased to perspire even on the warmest humid days and my skin is very dry despite being lavish with the moisturiser. Once again, anyone else got this problem?
Don't read the next bit if you are squeamish.
My toenails don't grow properly anymore and my big toe nails are coming away from my toes. Possibly due to the constant swelling during flares. Think the other nails are going to follow suit. If I press on them it is uncomfortable rather than painful (so far) They also secrete a little opaque liquid (not pus as such and no unpleasant smell) which dries to a crust under the nail and then has to be cleaned out. Anyone else have a nail tale to tell?
Hi Tillyp,
My feet also seem to remain shades of red, blue and purple except when i raise my feet or walk( when I’m not flaring). When i raise them and fan them, i do get relief. I used to ride a recumbent bike and it seemed to help with circulation, but i started having issues with flaring with the heat here in FL. I need to start back.
I do not sweat as much as i used to. When i get really hot (say outside in the sun), i start tingling, stinging and itching severely everywhere including my scalp. When i start cooling off, it goes away.
As far as toe nails, my big toes sometimes ache when they swell. I can feel the pressure on my nails. My little toes can swell pretty big and cause a lot of pain if i dont elevate them.
I can totally relate to this… My feet never look normal colour there ethir bright red, medium red’ pink or purple! Never ever normal. The toenails, I actually wrote a post about this on a Facebook support group as a lot of people uploaded pics with normal toes and painted toenails and I’m unable to do that! I’m 18 now got this at 12 and haven’t been able to paint them since about 14 as my toenails look like a 90 year olds rotten feet! (no word of a lie) my toenails don’t grow, there scabbed over and crusty (yuck!!) the two big toes are black and have even grew off and fell off to reveal new ones!! (agony) they don’t look like toenails at all… Don’t like seeing people who can still paint there toenails moan about it as I feel like ‘omg ur toes are normal :(!!’ it is discusting!! Though have never came across another EM’er with the same :).
Even worse off, I can’t apply moisturiser! Makes things worse plus causes the EM to majorly increase… Therefore I’m stuck with rotten feet EM I can pass off as sunburn… Rotten scabby feet? Ya, they speak for themselves! xx
Oh Lauren, I feel so sad for you youngsters with this miserable life limiting ailment. What life, indeed. At least I have had a mostly good innings up til now at age 65 but normal everyday living has stopped dead in it's tracks for me as I suspect it has for many of us.
I do use moisturiser as my skin is very dry and, as you well know, the cracks and sores take forever to get better.. I also think the moisturiser can make the flares worse too.
Did you finally get your ulcers to heal?
Lauren said:
I can totally relate to this.. My feet never look normal colour there ethir bright red, medium red' pink or purple! Never ever normal. The toenails, I actually wrote a post about this on a Facebook support group as a lot of people uploaded pics with normal toes and painted toenails and I'm unable to do that! I'm 18 now got this at 12 and haven't been able to paint them since about 14 as my toenails look like a 90 year olds rotten feet! (no word of a lie) my toenails don't grow, there scabbed over and crusty (yuck!!) the two big toes are black and have even grew off and fell off to reveal new ones!! (agony) they don't look like toenails at all.. Don't like seeing people who can still paint there toenails moan about it as I feel like 'omg ur toes are normal :(!!' it is discusting!! Though have never came across another EM'er with the same :).
Even worse off, I can't apply moisturiser! Makes things worse plus causes the EM to majorly increase.. Therefore I'm stuck with rotten feet :( EM I can pass off as sunburn.. Rotten scabby feet? Ya, they speak for themselves! xx
Yeah, there mostly all healed on my legs! Just dry crocodile like hard skim though no ulcerated scabs *woooo. Still got ulcerated feetand toes though skin sheds a lot… So hopefully one day!.
They really are a bother ulcers and sores and thick dry patches! Though compared to 5 months ago, they are looking amazing!. Went to a dermatologist and she actually suggested it could have been a form of psoriasis (not sure on spelling) as it came the exact time my nerve damage increased dramatically (when I ended up paralysed) and as psoriasis is a nerve related skin condition she said it could be related! I really think so.
Thank you for asking! How is your sores looking?
tillyp said:
Oh Lauren, I feel so sad for you youngsters with this miserable life limiting ailment. What life, indeed. At least I have had a mostly good innings up til now at age 65 but normal everyday living has stopped dead in it’s tracks for me as I suspect it has for many of us.
I do use moisturiser as my skin is very dry and, as you well know, the cracks and sores take forever to get better… I also think the moisturiser can make the flares worse too.
Did you finally get your ulcers to heal?
Lauren said:
I can totally relate to this… My feet never look normal colour there ethir bright red, medium red’ pink or purple! Never ever normal. The toenails, I actually wrote a post about this on a Facebook support group as a lot of people uploaded pics with normal toes and painted toenails and I’m unable to do that! I’m 18 now got this at 12 and haven’t been able to paint them since about 14 as my toenails look like a 90 year olds rotten feet! (no word of a lie) my toenails don’t grow, there scabbed over and crusty (yuck!!) the two big toes are black and have even grew off and fell off to reveal new ones!! (agony) they don’t look like toenails at all… Don’t like seeing people who can still paint there toenails moan about it as I feel like ‘omg ur toes are normal :(!!’ it is discusting!! Though have never came across another EM’er with the same :).
Even worse off, I can’t apply moisturiser! Makes things worse plus causes the EM to majorly increase… Therefore I’m stuck with rotten feet EM I can pass off as sunburn… Rotten scabby feet? Ya, they speak for themselves! xx
same here!!! mine are always purple/red/blue, and only change when elevated. When i first got em, it helped a TON to elevate them, now it doesnt give much relief at all!! When i first got em i would feel a lot of "throbbing" and now i dont feel it at all, i just have flares. I think that the body changes over time after having severe em and that these are those changes
It doesn't make any difference to the colour or swelling if I raise my feet anymore. As to the itching, oh I know what you mean entirely, it drives me to distraction. at times, worse when tired, but then who isn't tird with EM! There was a post about itching some time back so we are not alone. The pressure on the toenails is pretty painful too. I really mourn for my feet (and shoes)as until this started I had never had any trouble with them.
Hope you manage to get back to your bike especially if it helped with circulation. Wish I had your energy.
kb904 said:
Hi Tillyp, My feet also seem to remain shades of red, blue and purple except when i raise my feet or walk( when I'm not flaring). When i raise them and fan them, i do get relief. I used to ride a recumbent bike and it seemed to help with circulation, but i started having issues with flaring with the heat here in FL. I need to start back.
I do not sweat as much as i used to. When i get really hot (say outside in the sun), i start tingling, stinging and itching severely everywhere including my scalp. When i start cooling off, it goes away.
As far as toe nails, my big toes sometimes ache when they swell. I can feel the pressure on my nails. My little toes can swell pretty big and cause a lot of pain if i dont elevate them.
Hello Lauren, as my mum in law used to say, we'll noo hae oor troubles tae seek! Meaning that trouble finds us instead of us going looking for it. Are your feet looking any better now since you put your photos on here? I do hope so.
My ulcers which were never big have taken forever to heal what with the constant swelling. Still battling with a tiny but exquisitely painful one on my heel which can bring me to tears with the pain sometimes and I have a pretty high pain threshhold. Just been given a dry dressing containing silver which I'm hoping will help. At least it hasn't made the skin around it go all wet and horrible which some of the other dressings have done. Fingers crossed this time. And for you too.
Lauren said:
Yeah, there mostly all healed on my legs! Just dry crocodile like hard skim though no ulcerated scabs *woooo. Still got ulcerated feetand toes though skin sheds a lot.. So hopefully one day!.
They really are a bother ulcers and sores and thick dry patches! Though compared to 5 months ago, they are looking amazing!. Went to a dermatologist and she actually suggested it could have been a form of psoriasis (not sure on spelling) as it came the exact time my nerve damage increased dramatically (when I ended up paralysed) and as psoriasis is a nerve related skin condition she said it could be related! I really think so.
Thank you for asking! How is your sores looking?
tillyp said:
Oh Lauren, I feel so sad for you youngsters with this miserable life limiting ailment. What life, indeed. At least I have had a mostly good innings up til now at age 65 but normal everyday living has stopped dead in it's tracks for me as I suspect it has for many of us.
I do use moisturiser as my skin is very dry and, as you well know, the cracks and sores take forever to get better.. I also think the moisturiser can make the flares worse too.
Did you finally get your ulcers to heal?
Lauren said:
I can totally relate to this.. My feet never look normal colour there ethir bright red, medium red' pink or purple! Never ever normal. The toenails, I actually wrote a post about this on a Facebook support group as a lot of people uploaded pics with normal toes and painted toenails and I'm unable to do that! I'm 18 now got this at 12 and haven't been able to paint them since about 14 as my toenails look like a 90 year olds rotten feet! (no word of a lie) my toenails don't grow, there scabbed over and crusty (yuck!!) the two big toes are black and have even grew off and fell off to reveal new ones!! (agony) they don't look like toenails at all.. Don't like seeing people who can still paint there toenails moan about it as I feel like 'omg ur toes are normal :(!!' it is discusting!! Though have never came across another EM'er with the same :).
Even worse off, I can't apply moisturiser! Makes things worse plus causes the EM to majorly increase.. Therefore I'm stuck with rotten feet :( EM I can pass off as sunburn.. Rotten scabby feet? Ya, they speak for themselves! xx
I have lost all of my toenails over the years. I'm 51, and have had severe flares since 18, tho probably had it before, as I was always going barefoot year round as I couldn't stand shoes. I lost my first toenail at 24, and the last at 37, and since then have developed what looks like psoriasis on them all. The erythromelalgia is mainly in my toes, sometime the heels, and occasionally the soles of my feet. I can't tolerate creams, and barely tolerate ointments. I have never found anything that helps. If I cover my feet, they flare so badly that it leads to bleeding. My skin on my toes is like cellophane, thin and inflexible OR very thick and dry. I have also been dx w/sarcoidosis, and suffer from fibromyalgia pain. I remember when I painted my toenails red! Now they look horrible, and it is especially apparent in winter when I'm wearing my sandals in the cold. Grass, especially wet grass, always feels like knives on my feet. My hands have started exhibiting symptoms the past few years, and my fingernails are pretty well shot. I've had drs tell me that I will probably lose them as well. I hope we can find answers for everyone here.
I have also lost my toenails and have issues with them growing in weird. Been this way for years before diagnosis with EM and tried every known treatment!! Looking at this forum I think its safe to say that some people suffer with this as a symptom. What is left of mine is deteriorated nail bed and sometimes a piece of damaged new nail growing in. I take a very small file and gently carefully file them flatish; sometimes I paint them with a glitter chunky polish or one that has texture so that the bumpiness is not so evident. It does not pass as "normal" but it makes me feel better.
I don't tolerate most lotions as they increase my burning & redness. Some burts bees products do not. A massage therapist of mine years ago turned me on to Emu Oil --its actual oil from emu birds and has some sort of natural anti-inflammatory properties (I am no expert on the product) but it works for me when nothing else does and soothes my skin, seems to help with the dry tightness-- I sometimes refrigerate it a bit because it is thin and refrigeration thickens it and cools it making the application feel nicer. I only apply a small amount and it goes a long way.
Lauren said:
I can totally relate to this.. My feet never look normal colour there ethir bright red, medium red' pink or purple! Never ever normal. The toenails, I actually wrote a post about this on a Facebook support group as a lot of people uploaded pics with normal toes and painted toenails and I'm unable to do that! I'm 18 now got this at 12 and haven't been able to paint them since about 14 as my toenails look like a 90 year olds rotten feet! (no word of a lie) my toenails don't grow, there scabbed over and crusty (yuck!!) the two big toes are black and have even grew off and fell off to reveal new ones!! (agony) they don't look like toenails at all.. Don't like seeing people who can still paint there toenails moan about it as I feel like 'omg ur toes are normal :(!!' it is discusting!! Though have never came across another EM'er with the same :).
Even worse off, I can't apply moisturiser! Makes things worse plus causes the EM to majorly increase.. Therefore I'm stuck with rotten feet :( EM I can pass off as sunburn.. Rotten scabby feet? Ya, they speak for themselves! xx
Sorry, just realized this was an old post. Spent some time replying to the original poster and then when I saw it was dated 2012 had to think twice what year it is now. In my defense - sleep deprivation.
Well Blue if it wasn't for you I would of never noticed myself!! We must of had a member or a couple find this older post and reply to bring it to the front so it must be a good topic to bring back around especially with us having new members all of the time this could be new to them. I will share it and get it out more and maybe Tillyp will be able to see the new replies.
Tillyp, I have had this issue in the past. My feet are still never normal unless I keep them up and in a cold room. I had a time in the past before I knew what I had and that cooling helps so much and my feet would burn 24/7 for months along with various other parts of my body. During this time I had several toe nails fall off and the ones that were left were covered in deep ridges. I also had several sores all over my feet. Since I have discovered if I keep in my cool house ( around 60 degrees) and limit my activities in the house to about 5 minutes then put my feet up again I haven't had that problem since. They still turn blue or purple in a cool room if I sit too long with them down so I live in my recliner. I still have burning flares in the evening or if I am forced to leave my home for doctors appointments but they are minimized quite a bit by using theses tactics.
I know it doesn't sound like much of a life but I didn't have much before anyway from all of the pain I couldn't walk at all! Not even the 5 minutes at a time in a cool house I have now.
As far as the lack of sweating I have this too as do many of our members here. Have you seen a neurologist to have an autonomic nervous system diagnostic test? This includes a test to see if you are having problems sweating. Have you noticed with your lack of sweating a slowing of hair growth or hair falling out too?
It has been some time since you have posted this and I do hope you are doing better these days. Please let us know how you are holding up these days.
It's some how weirdly comforting to know that one isn't alone with the problem of "ischemic" feet! I believe that these particular symptoms are due to the lack of oxygenation of blood flowing into our extremities. Blotchy feet, loss of toenails, crustiness under nails, lack of hair and perspiration, very dry skin, slow healing and ulcers are characteristic of conditions that cause a chronic lack of oxygen in tissues (e.g. diabetes). This lack of oxygenated blood is part of EM itself, hence the symptoms we share. Also the pressure from the increased blood flow on blood vessels and other tissues from constant flaring can also cause physical trauma that leads to bleeds and oozing of clear blood products (serous parts) and damage to hair follicles and nails.
Here are a few things that have helped me (I realize that this may not help others as we are all different:
- DRY SKIN: Lipikar BAUME-AP (La Roche-Posay)--is the only cream that doesn't cause flaring and burning for me.
- SWELLING, HAIR GROWTH & BETTER OXYGENATION: Cymbalta (VERY LOW DOSE = 10-15mg/day--I count little beads in the capsules--started with 5, now up to 125). Within one week the swelling decreased tremendously, skin now looks less mottled, hair and toenails started growing once again and sores are healing. I now have almost 2/3 of a big toenail!!). Cymbalta's effect on norepinephrine levels can help with circulation problems (by causing constriction of blood vessels).
- FLARING/ELEVATION: I find that elevating my feet slightly (about 12-16" off the ground) is better than higher elevation. When I elevate my feet higher, then when I get up (even if I do it slowly) the rapid change in blood flow actually triggers flares for me.
- COOL ENVIRONMENT: I find that if I keep my environment no warmer than 68F or 19C I can function for 15-20 minutes at a time during the day and 5 minutes at night. Any colder than that and I seem to get too cold and when I warm slightly I get more flares. FInding just the right temperature has really helped me reduce the severity of flares.
As a result, I have far from normal looking feet BUT it is a significant improvement
It's some how weirdly comforting to know that one isn't alone with the problem of "ischemic" feet! I believe that these particular symptoms are due to the lack of oxygenation of blood flowing into our extremities. Blotchy feet, loss of toenails, crustiness under nails, lack of hair and perspiration, very dry skin, slow healing and ulcers are characteristic of conditions that cause a chronic lack of oxygen in tissues (e.g. diabetes). This lack of oxygenated blood is part of EM itself, hence the symptoms we share. Also the pressure from the increased blood flow on blood vessels and other tissues from constant flaring can also cause physical trauma that leads to bleeds and oozing of clear blood products (serous parts) and damage to hair follicles and nails.
Here are a few things that have helped me (I realize that this may not help others as we are all different:
- DRY SKIN: Lipikar BAUME-AP (La Roche-Posay)--is the only cream that doesn't cause flaring and burning for me.
- SWELLING, HAIR GROWTH & BETTER OXYGENATION: Cymbalta (VERY LOW DOSE = 10-15mg/day--I count little beads in the capsules--started with 5, now up to 125). Within one week the swelling decreased tremendously, skin now looks less mottled, hair and toenails started growing once again and sores are healing. I now have almost 2/3 of a big toenail!!). Cymbalta's effect on norepinephrine levels can help with circulation problems (by causing constriction of blood vessels).
- FLARING/ELEVATION: I find that elevating my feet slightly (about 12-16" off the ground) is better than higher elevation. When I elevate my feet higher, then when I get up (even if I do it slowly) the rapid change in blood flow actually triggers flares for me.
- COOL ENVIRONMENT: I find that if I keep my environment no warmer than 68F or 19C I can function for 15-20 minutes at a time during the day and 5 minutes at night. Any colder than that and I seem to get too cold and when I warm slightly I get more flares. FInding just the right temperature has really helped me reduce the severity of flares.
As a result, I have far from normal looking feet BUT it is a significant improvement
I have EM and all that goes with it. I am a shallow breather. This was pointed out to me by an opera singer years ago. When I start flaring I do deep breathing and it helps. I wonder if others with EM are shallow breathers? I do urge you all to try deep breathing to oxygenate your blood.
Can't say much about toenails other than my mom's are terrible. She possibly has a version of EM that is related to a drug reaction or perhaps the Sodium Nav 1.7 genetic defect, we don't know which or if both.
In her case her nails in her feet are bad. She had sharp pains like her toenails were being pulled out when the disease started to happen back in 2001.
As far as creams, I can't say much about other creams, that may have worked for others, but the only cream she has used that doesn't cause a flare and gives some relief is a mixture of Camille Beckman French Vanilla Glycerine hand therapy and lanocaine. It seems that the french vanilla cream doesn't hold heat in like many other creams that make her flares worse.
As far as the skin looking better the cream may help a little. We have tried Vitamin e cream as well but this isn't used much. She also has tried dipping her feet in water with a bit of hydrogen peroxide in it, to help with skin conditions in the past. I'd check with a doctor before doing this and we limited that to ten minutes or less. The hydrogen peroxide water soaking seemed to help the skin a bit, but it did nothing for the toenails at all. We avoid putting cream mentioned above on the toenails or nail bed.
I've lost toenails too. Two of one big toe and one off the other big toe. Knock on wood I haven't had that happen for a while. The ridges on my big toes were very bad at one point. But less noticeable now, thank god. My other toes nails are very weak but this is not something new to me.
I went years without sweating -- I really didn't seem to sweat at all for about 6 years .It's to do with my dysautonomia. ill functioning autonomic nervous system. But the ability to sweat returned and if I do something physical like vacuum, I get very hot and sweat now pours off me. However my feet never get sweaty and are always dry. Although I never have shoes on so they don't really get much of a chance to get sweaty, I guess. When the EM flaring isn't too bad I really slather on a creamy zinc based baby cream to combat dryness and it helps a lot. Someone just recently posted that Burts Bees cream was useful for them. I have used it and it is good. The zinc based cream is just cheaper and I can really glob it on.
It's off this topic but my burning sensation has changed. My skin feels drier when it burns. Like all the moisture has been sucked out of it. And I would no longer describe the burning and pain as like my skin is being sandpapered. Now, it's actually like someone has given me chinese burns over my face, neck arms, legs and feet. Someone else mentioned chinese burns and I identified straight away.
Plus a recent development is that a cool shower is not helping to stop or even slightly relieve the burning at all. And I can't bear to use a towel to dry off. Even my oldest, softest ones feel rough now. I think my pain levels are ramping up. I've seen an increase in pain levels this past year. I may be at my new normal. Or maybe it's just summer here making it worse than it has been. I did not have a good winter so I guess summer was going to be even tougher.
I took a painkiller today and got 4 hours of significant relief and felt much more like my normal self. Both heat wise and emotionally. But when it started to wear off, as the burning returned I felt really low again. I really need to be more proactive about seeking out proper pain relief for this thing. It's gotten to the point that my usual ways of dealing with and minimizing the pain -- a strict diet, lots of cool showers -- is no longer effective. Fans are still helpful. Knock on wood. The airconditioning at the supermarket down the road from my house is very good too. Those places are chilled to the max and if I hang out near the freezer section it really helps. But not open in the middle of the night when it could really help. I could live in a supermarket quite comfortably I suspect.
I am in my 30s and have constant discoloration and swelling of my feet and ankles. I very rarely wear dresses that are short or shorts b/c of my cankles! The maxi dress is my best friend.
As far as decreased sweating … Erythromelalgia is often connected with small fiber neuropathy or autonomic dysfunction. I have decreased sweating and had a autonomic function test that measures sweat production (any other nervous system issues).
Jenn
EM I can pass off as sunburn… Rotten scabby feet? Ya, they speak for themselves! xx