A Thirty Year Wait

I was diagnosed with Chilblains also known as pernio or perniosis last week.  I have been struggling with painful feet every winter for more than thirty years.  My feet go from fine to on fire and wet to chilled to swollen and misshapen toes.  I thought it might be one thing or another and tried different shoes, socks and strategies to alleviate the situation.  Some days my feet are so sore, swollen and stiff I can hardly walk. 

The first doctor I saw said that it was from smoking.  I quit and waited 10 years for it to go away.  The next attempt at a diagnosis resulted in the podiatrist concluding that I had chronic athlete's foot.  After two years of treatment I saw little improvement.  The foot powder helps a little.  I suppose that it absorbs some of the sweat, possibly avoiding the chill to wet, sweaty feet.

Next was the possibility of infection and I took a couple of rounds of antibiotics which seemed to help a little.

I saw a dermatologist for another issue and showed him my feet.  He said that it looked like a circulation problem and suggested a vascular surgeon.  When I told my primary care MD he thought it was a poor diagnosis and said that I should get a second opinion, which I did.  The second dermatologist knew immediately, saying that he had a patient about 10 years ago with the same issue.  He brought the medical book in with the description and pictures.

I have made a few modifications and started searching for more information.  I'm hoping for more comfortable feet.

soretoes soretoes
56-60, F
4 Responses Feb 28, 2010

I have it, too. It's a nightmare. I've seen 4 doctors so far, and a doctor at a University here wants to write a journal entry on it, since it's not seen in CA much.

Bottom line: There is no $ in it, so no research has been done. If you google it, the same articles pop up. Two of my doctors had to google it. LAME!

Maybe someday some nice person will do studies on it and figure out why we have it.

I'm going to a neurologist next week, because I have nerve damage in my toes from it.

I had pernio , Chilblains , for over twenty years. I thought it was erythrolmelalgia. I thought it was athletes feet. i tried everything to find a way to deal with it. Finally, when i realized it might be pernio, i saw that a pill called Nefidical might help. From the first dose, the pernio stopped. It was gone for two years. Then recently, it started to come back. I was taking only 1/2 a pill and coming back and forth from the cold outside to an over heated house from the fireplace. My feet can't stand the fluctuation of temperature along without enough dialation of the blood vessels without the Nifedical. I am beating it again, now that i caught what i was doing wrong.

Wow - I was struck down with this 5 yrs ago after the birth of my first child<br />
It started as Raynauds Syndrome, but every October at least 1 digit will be afflicted<br />
with the added bonus of a Chilblains episode. Its incredibly painful and always<br />
lasts for 4 months. This year one of my fingers has been badly injured with lots of<br />
infammation, its covered with this unsightly scab and will get super painful if I lay down.<br />
The pain is worse than anything I had ever experienced while in labor. Its fierce and simply<br />
will not be ignored. I have to get up and walk around and then usually it will subside some.<br />
It seems as though walking around provides better circulation to the finger and that seems<br />
to soothe it. During the day when I"m up and about I don't have the fierce pain - unless<br />
ofcourse I bump into something which is many times per day and then it is sends<br />
the most shocking and intense pain I have ever known. It seems as though this is all <br />
stemming from some disruption that occured with my autonomic nerve system. It just <br />
collapsed one day and I've been stuck with this ever since.

I have had chilblaines for about 16+ years now and still have not come up with anything to help me out with mine. I get them on my feet and hands and they are very painful. All the doctors I have seen says there is nothing to do about them- stay warm. yeah right where gloves 100% of the time and my hands still are cold even with the gloves on. I have come to the conclusion suffer thru winter and enjoy the summer months while they are here. Hope yours are not to painful this winter - we have already had some snow and I can barely walk or hold a pencil. Good luck!