I have seen a few others mention chilblains here before, so I am here to share a discovery:
Showers are the cause of my chilblains, and I have been able to avoid getting any new ones for over a month now by changing my shower habits, even though it is still dead of winter here in Minnesota.
My theory is that my EM flares are worse in winter because my feet feel icy cold in between flares, so that when an EM flare comes on, my toes go through a much larger temperature range than they do in other seasons. Therefore, I reasoned, the extra-sudden onset of shower-caused flares might be the cause of the chilblains.
Here's what I do:
I use lukewarm/warm water - I get chilled easily, so I can't use cold/cool water.
I shower in a tub/shower combo, and point the showerhead downward so that the back end of the tub stays cold. I stand toward the back of the tub (on the colder part) completely out of the water while scrubbing, shampooing, etc., then step into the water only to rinse.
I began doing this in early Feb and haven't gotten a single fresh chilblain spot on my toes since. I still flare from the shower (a mix of hot flare and purple from blood pooling from standing in place so much), but not having the additional pain of chilblains (which, for me, lasted 3-4 weeks, by which time I'd gotten more) is a great improvement.
Now, if I could just get rid of EM all together... :\
HI! Thanks for sharing your discovery! I have Chilblains, not EM and have had it for years. The main cause of sores is from the quick warming after being cold, so what you are doing is good...another thing I do is to make sure that I have warm toes prior to getting in a hot shower, bath, or sauna...I use toe heaters when outside skiing, warm slippers in the house and have avoided problems that way. Another way to avoid them is by changing socks or wearing wicking socks...I also live in MN !
Thanks for the Info. I don't have chilblains but taking a shower is painful, especially on my feet. So I fill the bathtub with cold water up to my ankles - that way they remain in cool water during the shower.
Libby, sorry I didn't see this before, I replied to what you were saying in the thread about cold therapies but wanted to ask if have you been checked out for Raynauds? I live in Iowa and the winters are a beating for my EM and Raynauds rollercoaster. I get terrible chilblains and my brothers and my mom, who have it as well, get cold weather injuries in our home. We have Raynauds, which is the exact opposite function that EM is...it's a constant extreme of too much blood, then not enough. In the dead of winter, I have to stay in a 58-60 degree room to keep my facial EM from burning extremely, but I have to stay under a heated blanket to keep my core body temp okay and so that my Raynauds on my feet and hands warm up to reduce cold weather injury. I've lived in Iowa for 7 years, and every winter my flaring and flushing are tenfold worse, and so does the rest of my family's as we have genetic EM. There is no acclamation ability when you have the Raynauds component. I think that the Raynauds and the EM feed off eachother...Raynauds is considered an autoimmune problem...and I think my body responds to the EM by trying to cool down, and thus cooling way too much. Then it tries to warm itself up...and a horrible flare ensues. Do you have any healthcare or anyone to ask about the possibility of Raynauds?
As to the chilblains, sometimes hydrocortisone cream can help with the swelling and itching as they heal, they can be so aggravating!
As to showering, it can be a killer. When I shower in the winters, I preheat my bed with an electric blanket...shower...throw on my robe and jump back into bed for a few minutes to heat my feet up again. Then, I wear while my feet still have some heat from the artificial heating blanket, I throw on some cotton socks, then hunting socks from the Redhead company at Basspro shop. Then, on top of that, I put on Ugg style shearling boots or slippers. It's the only thing that helps. Even so, it's a constant peeling them off when my EM starts flaring up. There is no constancy.
If you can, read about the coexistence of EM and Raynauds, as there are some papers out there. Here is one:
Hey Moe, I replied to your other post before seeing that you'd written more here. That much heat and bundling sounds like too much for me with the EM, but I'm sure some of it will come in handy. It sounds like showering makes your Raynaud's act up, but it's the opposite for me - the warmth of the water causes the EM to flare up (even if the rest of me is chilly). Thanks a bunch for the info!
I have both raynauds and em and live in Britain I have chilblains all year and my feet always have acrosynosis (discoloration) according to the doctors I have noticed that the showers do not help however I am unable to bath because my legs go completely numb so showers are the better option. I have tried a lot of medication the problem is here in the uk the doctors are only interested in treating the chilblains before the raynauds and em and they have said this to me but they don’t understand that the chilblains will not go until the other two are under control so I am always going in a circle especially with seeing a different specialist everytime I go to London and have to re explain over and over again so I haven’t really proressed. My most recent medication is diltizeam after nifedipine hydroxychloroquine and gtn patches all failed me I have also been offered an illprost infusion but can’t go for this yet as it’s for five days and can’t fit it in around school in addition to this I have been offered Prozac for blood circulation improvement but I declined this. The problem is all these medication for the raynauds make the em worse! I am also now for the last two years been experiencing fainting but no one has yet looked into this and am deficient in vitamin d which was checked a year ago but It was only a month ago a doctor said to me it’s low and they didn’t say how to get it up. So just went and brought some vitamin supplements but don’t no if they are the correct dosage.
It sounds like it would be really tough to have Chilblains and EM! From what I've discovered, if you have Chilblains you pretty much have Reynauds and both are treated the same way. I have both, I've seen dermatologists, Vascular docs, Rhuematologists, for 20 years...more recently I've stepped it up because I was starting to lose feeling in the tips of fingers...that's what will happen when it gets really bad. When I warm my core, unfortunately all it does is make me hot...I have no circulation going to my fingers and toes so I need to warm that area directly...my core does nothing...I use lots of toe heaters and hand warmers along with the wicking warmer socks and fleece mittens...I have also found wearing a wind cover over the mittens helps...
There are many prescriptions that will half way help with the swelling...so far the best thing I've found beyond the prescriptions and hydrocortisones that really haven't done much for mine...is to soak them in very warm Dreft baby soap when it flares really badly and feels infected...before the sores open up. This seems to pull the toxins out of my body...I've used it on infected sores in the past also. I rarely have skin on my baby toe all winter because it ends up opening up after getting the sores so I get duoderm skin covering and just put it on until it heals. The Lymphatic massage also makes a HUGE difference when done daily...that has made the absolute most difference for me of everything. This winter, I live in Duluth, MN where we were below zero temps from November until March for the most part...I continued to be outside skiing daily and had minimal flare ups...not sure if I previously mentioned this but Arnica circulation gel also has helped me...
Hi, Slushsucks... having both chilblains and EM does suck! I forgot that you don't have EM - I just kind of assume everyone here does (or has family with it or some such situation). Having EM means that, unfortunately, I cannot treat the chilblains because any warmth causes a flare (and any medications for chilblains/Raynaud's would make flares worse). All the talk of mittens, warmers, warm soaks... the thought of it makes my skin crawl! I'm very glad those things help you, but I can't even give 'em a shot. So my only option is to try to avoid the chilblains in the first place. Luckily, I have not had any of them turn into open sores (knock on wood) - there's just horribly tender for a few weeks before they suddenly start to fade away. My skin is very fragile, but I haven't lost any - that sounds really awful!
Have you tried the Lymphatic massage? I got a prescription for it and went to a PT who taught me how to do it in three sessions. I do it daily and it really helps! They say it works with autoimmune diseases and more! I was really surprised! If you live anywhere near the Iron Range, the absolute best doc I have found for Chilblains and Reynauds is Yokel...I drove an hour to see him once and now I just call when I have issues...in this cold climate it amazed me how few docs even knew what Chilblains was! I found one vascular doc in Duluth and two Rhuemotologists who were helpful too!
Does EM have anything to do with circulation?
Eve
LibbyK said:
Hi, Slushsucks... having both chilblains and EM does suck! I forgot that you don't have EM - I just kind of assume everyone here does (or has family with it or some such situation). Having EM means that, unfortunately, I cannot treat the chilblains because any warmth causes a flare (and any medications for chilblains/Raynaud's would make flares worse). All the talk of mittens, warmers, warm soaks... the thought of it makes my skin crawl! I'm very glad those things help you, but I can't even give 'em a shot. So my only option is to try to avoid the chilblains in the first place. Luckily, I have not had any of them turn into open sores (knock on wood) - there's just horribly tender for a few weeks before they suddenly start to fade away. My skin is very fragile, but I haven't lost any - that sounds really awful!
I'm sorry you feel that way, however, the Lymphatic massage is something that WILL help those with EM as are some of the other things...someone else chimed in a couple of months ago and said it is helpful. Have you tried that? I understand the heat is not something EM is able to tolerate...Raynauds is actually not a problem at all for me,it's a mere inconvenience, Chilblains however, is a major problem and I was directed to this discussion group with it by quite a few people. If you are not interested in my findings, doctors who have helped, please don't read my posts.
Jane said:
No offense please, Slushsucks, but if you don't have erythromelalgia and do not have any loved ones or family members that do, it would be best if you not pass on any advice on the forums. We can't treat our chilblains or anything else with the same methods that would work for someone, like yourself, who doesn't have erythromelalgia. I am not being difficult, it is just that talking about saunas (HEAT!!!) in one discussion and then asking if erythromelalgia has anything to do with circulation says to me, "Why is she on here??" I wouldn't want someone newly diagnosed to get bad information about what they should be doing or not doing based on something someone who doesn't even have the disease this board is put together for is suggesting. I have Raynaud's, too, and know how difficult it can be, and I know you need a place to talk about it and get ideas....I know Inspire has a lot of help for many autoimmune diseases and you might try there. Best of luck!
Slushsucks, I think Jane is right and I am sure she was not trying to be rude. I, too, am quite confused as to why you chose this specific support forum if you don't have EM. That's the thread that ties us all together here - it's in the name. You are absolutely welcome to be part of the community, but she's right that any advice about using warmth should probably not be posted here, as it would likely cause harm (or at least pain) if followed by someone with EM (and not everyone would be aware that you don't have it, just like I wasn't). I have not heard of lymphatic massage before, so I will definitely look that up to see if it is compatible with EM.
slushsucks said:
I'm sorry you feel that way, however, the Lymphatic massage is something that WILL help those with EM as are some of the other things...
Hi guys,
I also have EM and chilblains AND Raynaud’s, so days are painful no matter what for me. I am nodding my head here at so much of what I’m reading since I think I’ve tried almost all of these helpful tips at some point. I currently have to get into a cold shower and then gradually turn the heat up to a lukewarm temp, but then my EM flares, so I have to race out and get the fan on my feet and hands. The whole process of showering, resting, applying body lotion and skin care, rest, then applying my make up and clothes is such a long process these days.
I’ve also tried most of the meds mentioned here, but yes, most make my EM so angry so they don’t work for me.
My rheumatologist feels that my chilblains are caused by a particular type of vasculitis, but we are still trying to confirm that so she can prescribe some treatment (via IV infusion). I’ll keep you posted if it works!
You are very welcome in this forum. It is not just for Em'ers. Anyone who can contribute is much appreciated. I have EM and now co existing Raynaulds. Lymphatic massage has greatly helped with swelling and lymphatic pools. I have severe allodynia - I cant even wear clothes- but i can tolerate MLD. Its like a butterfly touch isnt it. Its marvellous. Research gives it the thumbs up in EM. Hey.... I can almost see my legs now ;). Only drawback is its rather pricey at £60 an hour.
God bless
mads
slushsucks said:
HI,
Have you tried the Lymphatic massage? I got a prescription for it and went to a PT who taught me how to do it in three sessions. I do it daily and it really helps! They say it works with autoimmune diseases and more! I was really surprised! If you live anywhere near the Iron Range, the absolute best doc I have found for Chilblains and Reynauds is Yokel...I drove an hour to see him once and now I just call when I have issues...in this cold climate it amazed me how few docs even knew what Chilblains was! I found one vascular doc in Duluth and two Rhuemotologists who were helpful too!
Does EM have anything to do with circulation?
Eve
LibbyK said:
Hi, Slushsucks... having both chilblains and EM does suck! I forgot that you don't have EM - I just kind of assume everyone here does (or has family with it or some such situation). Having EM means that, unfortunately, I cannot treat the chilblains because any warmth causes a flare (and any medications for chilblains/Raynaud's would make flares worse). All the talk of mittens, warmers, warm soaks... the thought of it makes my skin crawl! I'm very glad those things help you, but I can't even give 'em a shot. So my only option is to try to avoid the chilblains in the first place. Luckily, I have not had any of them turn into open sores (knock on wood) - there's just horribly tender for a few weeks before they suddenly start to fade away. My skin is very fragile, but I haven't lost any - that sounds really awful!
Thank you! I actually learned how to do the Lymphatic massage to myself...my doc referred me to a Physical Therapist who taught me how in three sessions ...the tricky part is finding a doctor who knows how well it helps then finding a PT who knows how to teach it and how to write it up for insurance. I was lucky to find both! I hope you can find someone to teach you!
Eve
mads said:
Dear Slushsucks,
You are very welcome in this forum. It is not just for Em'ers. Anyone who can contribute is much appreciated. I have EM and now co existing Raynaulds. Lymphatic massage has greatly helped with swelling and lymphatic pools. I have severe allodynia - I cant even wear clothes- but i can tolerate MLD. Its like a butterfly touch isnt it. Its marvellous. Research gives it the thumbs up in EM. Hey.... I can almost see my legs now ;). Only drawback is its rather pricey at £60 an hour.
God bless
mads
slushsucks said:
HI,
Have you tried the Lymphatic massage? I got a prescription for it and went to a PT who taught me how to do it in three sessions. I do it daily and it really helps! They say it works with autoimmune diseases and more! I was really surprised! If you live anywhere near the Iron Range, the absolute best doc I have found for Chilblains and Reynauds is Yokel...I drove an hour to see him once and now I just call when I have issues...in this cold climate it amazed me how few docs even knew what Chilblains was! I found one vascular doc in Duluth and two Rhuemotologists who were helpful too!
Does EM have anything to do with circulation?
Eve
LibbyK said:
Hi, Slushsucks... having both chilblains and EM does suck! I forgot that you don't have EM - I just kind of assume everyone here does (or has family with it or some such situation). Having EM means that, unfortunately, I cannot treat the chilblains because any warmth causes a flare (and any medications for chilblains/Raynaud's would make flares worse). All the talk of mittens, warmers, warm soaks... the thought of it makes my skin crawl! I'm very glad those things help you, but I can't even give 'em a shot. So my only option is to try to avoid the chilblains in the first place. Luckily, I have not had any of them turn into open sores (knock on wood) - there's just horribly tender for a few weeks before they suddenly start to fade away. My skin is very fragile, but I haven't lost any - that sounds really awful!
Yes- you are right. This is not offered in Uk by healthcare (NHS) . E pay for it privately. My lymphatic therapist showed me too- especially hands. MLD is a wonderful relief for my legs. Another couple of Em'ers have tried it and had good results. My legs are much more comfortable, plus boosting immune system, cirulation is so important.
Have you been told why you are getting chilblains so severely? Im so sorry you have to suffer with them. They are so painful and so miserable arent they?.
We are very glad you have stayed on the site Eve. The mod team at livingwitherythromelalgia love your contributions. Chilblains are a massive problem for many of us - especially with co-existing Raynalds.All information/knowledge raises awareness - keep contributions coming Eve;)