Chronic Chilblains (Worse when warm)

Symptoms and Treatments
1

Hi Everyone,

I just joined this group because I'm struggling with a chronic case of chilblains that hasn't been responding very well to typical forms of treatment. I suspect I may have erythromelalgia, but I have not been diagnosed. I want to open a discussion about this possibility with my doctor, but I thought it might be helpful to gain some insight from people who actually have erythromelalgia first.

I've had "hot hands and feet" (not knowing what else to call it) most of my life. It's worse in the winter and when I'm trying to go to sleep. I typically have to run my hands under cool water before bedtime. When the temperature outside is warm, however, I usually don't have issues (which is what led my doctor and I to believe it was perniosis, aka. chilblains).

My doctor did a biopsy and confirmed the chilblains. I have responded reasonably well to amlodipine (a blood pressure drug), because my symptoms are much worse when my BP is high. This is the first year I've ever had chilblains to my knowledge (at least as it manifests in red/swollen sores). It's been going on for five months, but was first only localized to one finger. Over the past 3 months, however, it gradually became a systemic problem. When I have a flare up, all my fingers and toes feel like they've been lit on fire. I also sometimes feel heat in my nose, ears, thighs, and butt.

The one thing that doesn't make sense is the chilblains' response to heat. Chilblains are supposed to get BETTER when kept warm, but mine get WORSE. I feel terrible when my feet are in fluffy socks, and feel best when I soak them in cool water. I will admit though, that if I soak them too much, my hands and feet will burn a little. It's a delicate balance.

Below is a list of how I respond to certain situations/conditions. Some of them make sense with chilblains, others don't. Maybe you guys can help me make sense of it:

When I feel the WORST:

Outside is cold

Outside is rainy

At night (especially when I'm trying to fall asleep)

When I take showers with warm to hot water

When my feet are inside WARM shoes and socks

When I exercise (I'm normally a runner, but now, even walking for 10 minutes makes me react)

When I'm cooking over a warm stove

When my BP is high (120/80)

When I feel the BEST:

Outside is warm

Outside is sunny and dry

During the daytime

When my hands and feet are kept at an even temp throughout the day

When my hands and feet are soaking in water between 73-76 degrees fahrenheit

When I'm not wearing shoes

My BP is low (100/60)

Has anyone with erythromelalgia had a similar experience with chilblains? Again, I plan to talk to my doctor, but I'd really like to hear from people who have been through the same thing.

I'm mostly just really really really tired. I've had almost no sleep for five straight months, and my quality of life has gone significantly downhill. I can't do any of the things I love to do (like run) and I'm really depressed.

Any help would be much appreciated. Thanks in advance,

Ruth

1 Like
2

Hello Redhead 47.

I have had a biopsy of my red swollen feet with sores all over and they said it was chilblains and to keep my feet warm. I told them how can I make them any warmer they are on fire all of the time! We didn't know about EM at the time .

Now I do have periods when I do actually have chilblains and Raynaud's and these come on by cold ( 60 or under) and pressure from writing or anything else that causes frequent pressure. When these happen it is all but impossible to warm them no matter what I try. I can have the chilblains for weeks to a couple of months with no reprieve .

My EM can be triggered by temps as low as 60 - 63 .so the same temp range can cause either condition.

Your responses to conditions are perplexing. Some just scream must be EM while others scream it can't be. Everyone's EM is different so it is difficult to say yay or nay about most things. I know some here have worse symptoms like yourself in the winter and this sounds crazy to me! Mine are way worse in summer. If you have a neurovascular instability like myself where you switch between EM , Raynaud's,Pernio ,Chilblains and levido Reticularis It may be more difficult to diagnose because it depends on what is presenting at the time of your visit or a biopsy may pick up on one of your problems such as chilblains but having this doesn't rule out EM.

Take care

1 Like
3

I agree that my symptoms presenting in winter is consistent with chilblains and not erythromelalgia. That's why I'm so confused! It feels like I have bits and pieces of different conditions so treatment has been difficult. The doctor tells me to keep my hands and feet warm but that's the LAST thing I want. It feels like I have a very narrow temperature window in which I can be comfortable.

4

There are others here that their EM is worse in the winter too just not me. Of course I can’t offer a diagnosis but just wanted you to know is possible to have both. Like you I have a very narrow field of temperature that is comfortable to me and often I can’t find comfort at all. The same temp that causes EM will later cause chilblains. I can also suffer from both at the same time! I call it walking a temperature tightrope. Any tiny tip in temperature causes one or the other condition. Is very frustrating to say the least.

5

I haven't logged in here in a long time, but I had to for this.

From what you typed above, you sound almost exactly like me.

I lived in a place with harsh winters and my EM was exponentially worse when it was freezing outside. I had chilblains on my toes that made every step painful, combined with severe flaring that was hard to reverse, especially at night. I never, ever have chilblains in summer, and the flares are much more easily managed in warmer weather (I'd say my happy place is around 60-65F outside). For a while, I had access to a swimming pool that was around 84F and I was able to swim for as long as I wanted without flaring - I believe that water simply regulates skin temperature much better than air. I REALLY miss swimming, but most health club pools feel too chilly and just make me shiver.

I moved to California last summer and haven't had a chilblain since. I think that my chilblains were caused by taking warm showers in winter, making my feet get hot/flared very suddenly combined with moisture... but even with shortened showers and warming up the bathroom a little so I could shower in cooler water, I never escaped the chilblains in wintertime.

Several doctors (who were unfamiliar with EM) have been really confused by my combo of EM with chilblains, too. Some told me that I must have Raynaud's, some told me that's not possible because my toes don't go blue. Anyway, whether Raynaud's is involved or not, I definitely have EM (far worse when it's cold out) and have had recurring chilblains.

6

LibbyK, it does sound like we have exactly the same problem! I guess I should just move somewhere warmer :)

7

When did everyone's EM and/or chilblains begin? Did it happen suddenly or gradually? I've had hot hands and feet since I was a kid, but it was always pretty mild and manageable until this winter when I got chilblains. It happened so quickly and aggressively that it makes me wonder if there was something very specific that happened this year to trigger such a dramatic reaction....

8

All of my EM problems actually started with my first-ever case of chilblains (winter of 2010/11, I think) when my feet got too cold one evening, then I put them in front of a little heater, and the chilblains started to show up later that night. Then, my feet were hot and itchy for two weeks, after which they settled in to the triggered flaring of EM that I have had ever since.

9

My Raynaud's is often not full blue... but white. The key (I've heard) is the hard line cut off of the color.

For me, chilblains are a rare result of re-warming my feet too quickly. I get them when I am cold, have Raynauds, and then rewarm my feet (say by a fire or in hot water or even very warm slippers). They show up a day or two after... and one event can last for a week or two. So I get them from being too cold... but they burn and itch like mad. As such, after I have them, cool feels better.

I suspect they're more common with the Raynaud's and EM combo... as it is the combo of that lack of blood, followed by the flooding back in of too much blood too fast, which many of us experience.

So you're exactly right, there's a window. You have to keep your feet warm enough that you don't have Raynaud's ... but if you have a Raynaud's attack -- be slow and careful with rewarming them!!!

10

I have similar issues, though the chilbains have yet to be confirmed by any doctor and are more recent than the erythromelalgia symptoms. Wish that I had better answers for both of us.

11

Thank you everyone for the responses. I've been feeling so alone with this for the last few months and it's just nice to talk to people who understand how much this sucks.

12

Dear Redhead,

Couple of quick observations. You are taking a calcium channel blocker ,which is helping you. That points to vasodilation being the problem rather than vasoconstriction. Vasodilation problems suggest a greater probability that your pernio is Raynauds related. However, as you have probably read- nothing EM can be so simplistically defined.

Other issues here include:

1. Almodipine . This drug can induce EM. That would give you a secondary medication induced EM. Might be why you are feeling 'heat' elsewhere ie: your butt :)

2. Almodipine helps Raynauds and it seems according to what you say - your pernio. However, it can , as I just stated cause EM. Therefore the two syndromes are getting confounded. Actually, you could have a touch of both..

2. EM can also occur with cold- not just heat. So EM can also cause pernio. Many people would argue against this but I actually experience cold/hot EM and Raynauds -thats why I mention the fact. Colour is the guiding light here. In Raynauds you will always get the blanching effect. You will get red (livido). You dont necessarily get the blueness.

3. You state you are worse in winter. Ok, that also can makes perfect sense :) Some EM'ers find it easier to stay in a climatised atmosphere rather than cold enviroment. You could be one of those sufferers that needs a maintained stable'warm' temperature, not the hot/cold extremes.I need the extreme.Im a frozen lady taking cold water baths and staying in the 30's..Yes- Raynauds hits pretty bad but i just cant tolerate slightest warmth. Caught between a rock and a hard place. Damned if i am hot, damned if I am cold. Cant be warm either lol!

4. When its warm you dont have issues/ you tolerate 73 soaks. EM is heat intolerance. I know I just mentioned climatisation but I think at 73 you would probably get some kickback ,however mild your symptoms

I also agree with sunshinetrees in that pernio tends to be as a result of warming 'cold' too quick. It can burn and itch crazy bad. Bear in mind that not all Raynauds or EM'ers suffer from pernio either.

Sorry I couldnt go into more depth but trying to type (with difficulty) on my phone.

On PC tmw so if you have any questions just ask.

I know this is all terribly daunting and scary for you , but you have definitely come to the right place.

We will all do our very best to support and guide you.

God bless

13

Thanks Mads! That's a lot of helpful information. I have an appointment next week with my doctor so I'm going to discuss all this with him.

One quick additional question...the blanching you referred to with Raynauds, is that only when you press on the skin or does it blanch on its own? My skin only blanches when I press on it (they never get pale or blue on their own). My skin mostly just gets bright red and hot when I get a flare up.

14

Raynaud blanching usually occurs on its own. You get intermittent red livido ( rash) and blanching. However, pressure will also produce obvious blanching. Ill send u some examples of livido and EM etc tmw......ok.

So , in terms of flares. The hot burning flares and cold burning flares can be hard to differentiate.EM really is 80% heat intolerance. Maybe a 20% report cold intolerance as part of their EM. Do any other factors trigger? Such as exertion stress fatigue foods pressure? Does cooling bring some semblance of relief? Hard to extrapolate whether secondary EM more probable than Raynauds. Or whether you just have chilblains for some unrelated reason. . Prior to pernio did you ever question whether you had an issue with temperature regulation ? Dont we all sound like detectives lol!. Hope you have a comfortable.night x

15

My symptoms are definitely worse when the outside weather is cold and wet (which is consistent with pernio). But I get my worst flare ups when my feet are inside warm shoes and I'm walking around (or running, which is basically a nightmare). Once I have a flare-up (which for me means that my feet and/or hands feel like they've been set on fire and the skin is bright red), the only thing that helps it subside is soaking the affected areas in cool (but not cold) water. Other triggers include stress (high blood pressure) and fatigue (which is sort of self-perpetuating because it's impossible to get to sleep while my hands and feet are flaring).

Years before I had pernio (in the form of sores/swelling), I had problems regulating the temperature of my hands and feet, mostly at bedtime, but this problem would mostly occur in the winter, not the summer when the temperature is warmer. I guess if most patients with EM have problems during the summer, then it's unlikely I would have EM.

I'm also pretty sure it's not Raynauds because my skin never blanches on it's own. It always has some color in it (mostly too much color!)

I guess maybe it's possible that I just have pernio....and if that's the case, maybe I've had it on a low level every winter for years, but it only manifested itself in red sores/extreme burning this winter for some reason. We did have a particularly harsh winter, so maybe that's why....

16

Hello again Redhead.

My Raynauds’s/ pernio came on about 6 months after my EM got bad and about 10 or so years after I had my mild EM symptoms.

I’ve added some picks with my Raynauds’s in my hands and pernio / possible pernio EM mix I can’t remember now! The first pic is of my finger once the blood starts to come back.
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I think this picture shows the Raynauds’s a little better.
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Based on those pics I'm pretty positive I don't have Raynaud's. Here's a pic of my foot during a flare-up.

f0ad02aacae339f4d60d4c8e7fcd88bd730c59d0.jpg2048Ă—1536 1.05 MB

19

Yes. This looks more like EM to me.

Here is my foot with EM And the resulting sores I was told was chilblains Although I had yet to experience Raynauds/ pernio at this point.
87-IMG_0068.JPG (1.92 MB)
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This one is weird. This was yesterday. My left foot is clear EM but my right foot is doing something I can’t explain.
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