I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Wednesday, September 16, 2009

Chilblains Lupus

Chilblains (sometimes called perniosis) are extremely painful sores that appear on the extremities such as fingers, toes, and ears. The red swollen sores usually occur during very cold yet humid conditions. If the sores last for extended periods of time or occur during warm weather, the Chilblains are more than likely caused by a connective tissue disease. Chilblains are most commonly associated with Lupus but are also seen in patients with undifferentiated connective tissue disease and Raynaud’s.

Clinical and histopathologic features and immunologic variables in patients with severe chilblains. A study of the relationship to lupus erythematosus.

Chilblain lupus erythematosus (lupus pernio): clinical review of the Mayo Clinic experience and proposal of diagnostic criteria.

Below are some pictures of my feet with Chilblains sores. It is extremely painful and I wanted to cut my toes off. When the sores start to heal the pain is replaced with intense itching. Not fun. Chilblains Lupus is a rare symptom of Lupus and most Rheumatologist have never seen a case. Three Rheumatologist saw my feet in person and another three saw the pictures. None of them could identify the sores. Trental and Plaquenil are suggested as treatment for Chilblains Lupus in medical journal articles. Prednisone instantly healed my sores and Procardia helped keep them from returning.


  1. I have been diagnosed with Hashimoto's and have chilblains. The itching drives me nuts (but then again, maybe I've always been nuts.) :)

  2. WOW. I have been suffering from this for a few yrs now. I currently am dealing with a flare up. One toe is extremely painful, so much so I limp.
    Few yrs back the Dr just gave me some cream for athlete foot. I found your page and the thing is my Mom was diagnosed with Lupus yrs ago.
    Thanks for sharing your story.

  3. I have been to doctors since I was 6 years old regarding this issue...I am now 29, and every winter without fail, I get horrible breakouts on my toes. Through my own research I've diagnosed myself with chilblains syndrome. I hope to find a doctor that can give me some insight as to why it's happening. As far as I know, psoriasis is the only immune disorder I have. Us people with immune disorders get all the weird crap! This time last year I was prego and I did not have a breakout...I am assuming it was due to the increased blood flow and circulation....but now it's back...toes get so swollen I can barely wear flip flops..which defeats the whole purpose of trying to keep your feet warm to prevent the sores from popping up, ugh! I found a website that has a cream for chilblains....it is www.aidanceproducts.com ...I will be ordering some...I pray it works.

  4. my breakouts start usually around November and don't end until April...they start out red and sore, then itch horribly, start to die off and turn purple, then turn black and peel!

  5. I have suffered with this since I was about 15, I am now 35. It gets worse every year. I have seen several doctors and no one can help. My red sores are now so bad they are purple, red, blue and ulcerated. I am taking pictures tonight and bringing them to the Doctor.

  6. I use to have that problem & with my lupus rashes thanks to a great friend I was given sudocrem. It helps with it & I don't ever have to be in pain again. Amazon sells it. A little tub goes a long way.

  7. I have Raynaud's and get horrible Chilblain's, they start in the fall when the temperature dips and reoccur until spring. My ANA levels rise when they first break out.
    Prednisone helps, but I always end up in the ER where I'm told it's Bueger's with cellulitis and to stop smoking (I've never smoked). I had one Doctor insist it was Herpetic Whitlow and put me on Herpes meds. I was so embarrassed!

  8. Thank you for your research and sharing. It is nice to know I'm not alone. I've been through the same experiences as many of your readers. I was diagnosed with Lupus in 1992 and Raynaud's started 4 years prior to the diagnosis. I get severe chilblains ,first on just the fleshy part of my toes, and now on the tops of my toes as well and down the outer edges of my feet where the pressure of my shoes is. My toes get so swollen, red and burning that I put hydracortizone ointment on them and socks before going to bed. While I am standing brushing my teeth at night, it feels like my toes are going to explode and I have to sit and put my feet up. Very painful. My fingers go white from making dinner because I am dealing with cold food from the refridgerator. They turn white from driving and holding the steering wheel too tight. I find pressure is almost as bad as "cold". Well that felt good to vent, knowing you all understand what I am talking about. Thank you.

    1. Get a steering wheel cover - wider grip, so the clenching is not so bad and doesn't leave your hands too cold - or hot! Discovered this years ago.

  9. Just found this. I thought I had a fungus infection. My toes look exactly like yours. Mine started as just little pinpoints that were painful and then spread. I have lupus and also raynaud's. it has been exceptionally cold where I live and I can recall a few days when my feet were basically frozen. Should have known better to always wear boots in the winter! Thanks for the post!

  10. I have had aps for 41 years (since 11 years old) . i nearly lost my 22 year old dughter this year to SLE. but i have always suffered with these chillblains features on toes fingers,nose and ears, i find taking an asperine really helps although i should'nt as i am on warfarine.

  11. I have had a red swollen toe since 2001. Now it is also in my fingers. It does not itch at all. Today I was diagnosed with Chilblains. I do not have bumps, just an overall redness and burning. Not Raynaud's. Doc wants me to start chloroquine. Good luck to all with this painful unsightly condition.