Chalblains a problem for anyone?

[UnaOwen]

Hello, there to all!  I hope that this message finds each of you well and safe.  I know this topic has been posted before but it has been a little while so I thought I'd ask again.

I recently noticed some red spots (about three, various sizes) on my second toe that were kind of tender but not exactly.  I initially thought that either I smashed it and did not recall the event or it was a insect/arachnid bite of some sort.  I decided to give it a couple days to see if it would heal.  I'm not diabetic so that's not an issue in regards to healing.

Anyhoo, making a long story longer.... I noticed that my fourth toe on the bottom was a tad tender (not painful with either, just slightly meh to the touch) and it is red, a tad swollen... almost unnoticeable but I could feel a difference when walking on it.  I don't think this is a coincidence at all.  I was concerned about it may be something like covid toes given the times being what they are but I have zero symptoms and I've been basically a shut in since the start.  Had a couple of tests that were negative but I don't really know.  I'm getting an antibody test tomorrow just to see.

So,  this is happening on the one foot.  Cold has been my friend since the start of my permanent illness (was born with dysautonomia and compensated for years until 2016) and it is so upsetting that this is happening.  This is my first time dealing with this if it is chalblains.  I take care of myself, exercise every day, eat a sensible diet, take supplements, and whatnot.  I do tend to stay in the cold more often than not but I didn't realize that I may have been hurting myself.  Well, the neuropathy doesn't help when I can't feel every type of pain.

I don't know where I am going with this, I guess I'd like to hear about your experiences and what you may do to help it.  Is this something to be very concerned with as far as treatment and future issues?  Do I need to start seeing a podiatrist for this?  I don't even know where to start but I would love your input if you have any!

I'm including some pics of the toes so if it doesn't appear that it could be chalblains, please let me know. The other foot is doing well so there's that!

Again, I hope you are all doing well and that each of you are safe!  Thanks again! 

 

[DizzyGirls]

My daughter was diagnosed with chilblains when she was about 12.  At the time, she was dealing with viral onset gastroparesis and we think that her malnutrition was the cause.  She was diagnosed by a dermatologist who found it odd that she would have a condition such as this living at sea level in California!  However, EDS, Dysautonomia, etc. is not a chooser of your region.  The oddest of things happen with these conditions!  She didn't do anything for hers.  She had a feeding tube for about 3 months, got her nutrition levels back up and the whole chilblains thing with the bumps, etc. just went away.  You should, however, see a dermatologist for them, just to make sure that you are correct.  There are bumps called "Gottran's Papules" and they are usually associated with more serious conditions.  That's what my daughter's PCP thought the bumps were, but the dermatologist he sent her to biopsied one and said it wasn't, which was good. 

[UnaOwen]

Thank you so much for the information!  I'm working towards finding a podiatrist because I did see a dermatologist that didn't think anything of my feet.  Granted, there were no chilblains at the time but everything else was present.  I hope that your daughter is doing well!  Thanks again for the response.  Take care of you!

[erinlia]

I've had a lot of trouble with chilblains.  I have had POTS since I was little.  Always I think.  I started getting really bad chilblains on my toes when I was nine.  eventually in my teens I started getting them on the soles of my feet and my fingers.  Im 39 now.   They are still an ongoing issue for me but I have learned how to manage them and keep them from getting as awful as they used to.  I've seen various types of doctors and tried all sorts of meds for them but none have been helpful, other than aggravating my POTS more.  The most helpful things for me has been keeping myself from getting cold.  I always have to dress warmer than others.  But i also have to avoid getting hot.  :)  I have Raynauds and if i get very cold at all I'm going to get more chilblains.  also stress is a big thing.  If I'm stressed about something I get chilblains.  It may not be that day.  They may show up the next day.    I'm careful too to keep my toes dry.  Even dampness from lotion on my feet can make them worse.  You mentioned that you exercise.  For me, for some reason, very much exercise make mine a lot worse.  When I was a teen and very sick the doctors thought physical therapy would be the magic cure.  that was when the chilblains moved into my fingers.   Sometimes my chilblains would turn into open sores that were tricky to heal.  I even lost the tips of two of my toes from repeated ulcers.  I now am able to keep my feet from getting that bad but I also now have nerve damage in my toes from years of chilblains.  I dont think this is at all typical though, so don't freak out.  :)  Chilblains are not as major of an issue for me now but its only because I'm careful about it everyday.  I'm pretty limited how much i leave the house, how much activity i do, how much I'm on my feet and how much stress I can handle.  But this is after thirty years of damage and years of not knowing how to manage it.  I would pay close attention to what seems to make it worse.  see if you notice any patterns.  

[Pistol]

3 hours ago, erinlia said:

For me, for some reason, very much exercise make mine a lot worse.

Hello @erinlia - this happens b/c in some cases of POTS exercise triggers vasoconstriction. I am quite similar to you in respect of Reynaud's: I too had it since childhood, and in my teens I developed actual gangrenous spots on my toes. They looked like chilblains that turned into black scabs. I have HPOTS and the high adrenaline levels cause vasoconstriction to the point of vascular spams. This causes ( for me ) Reynaud's, seizures from not enough oxygen going to the brain, and angina ( the coronary vessels spasm ). I am on high doses of calcium channel blocker - a vasodilator. --- I have to wear wool socks year round and have to avoid cold, like you: and also get it from stress or activity. Currently I am in a POTS flare, so the toes are constantly ice cold. What helps me the most are IV fluids, I have a port and get them at home. I already was so bad that I could not talk or think from loss of circulation to the brain, shivering and with ice cold feet ( I can submerge them in hot water for minutes and they come out just as ice cold ) - after just a few minutes of IV fluids everything visibly relaxed, my feet became warm, the shivering stopped and my speech and ability to think returned to normal. 

@UnaOwen - what can help for chilblains from Reynauds are hot and cold foot baths - you alternate submerging submerging your feet between hot and cold foot baths. 

[UnaOwen]

Thank you all for your responses.  Though I'm not happy that anyone deals with this issue, I'm glad to not be alone.  It suddenly came about and it is a bit scary.  I didn't even notice this until well after the episode, so I was taken aback for sure. 

A few days ago I did have an episode that was very noticable.  My right foot this time, center toe went completely numb and blanched.  I massaged my foot and toe for a while (maybe 4 or 5 minutes) until I got some sensation back.  I then started walking around with an exaggerated gait to get all the feeling back.  When it finally returned, it went right to a deep red, almost purple.  It never turned blue, which I thought it would.  It may be Raynaud's but I won't know that for sure until I see a doctor.  Now the toe is a tad sore but the swelling went down in a day, so there's that.  I've always had cold hands and cold feet, though these days (for the last couple of years) my hands will swell and turn very red.  So will my feet after a warm-ish shower.  I'm used to the pooling but this is really ugh.  I will count my proverbial blessings where I can.  I hope that it doesn't come to ulcerations.  

Again, my many thanks to you all!  I appreciate any answers I can get and I appreciate the support as well as advice!