Hi, I am a 69 yr old Grandma living in TN, U.S.A. After many, many months of increasing unusual symptoms, I was finally diagnosed in June 2020 with Mixed Connective Tissue Disease (MCTD), based on the results of a skin biopsy on one of my toes. Although, I was told that the skin biopsy results were “suggestive” of MCTD. However, after many, many visits to a rheumatologist that practices at a large university hospital, he (in addition to his colleagues) have changed my diagnosis to Chilblain Lupus. I have provided my rheumatologist with many photos of my symptoms and detailed reports every 2 weeks. I am currently taking hydroxychloroquine 200mg twice daily (now on for 3 months), duloxetine (Cymbalta) 30mg once daily for severe pain in hip joints during the night (now on for 2 weeks), and Triamcinolone Acetonide Topical Ointment (0.1%) twice daily for 2 weeks, then once daily to see if it quenches the fire in my toes.
This all began way back in Dec. 2019 when one toe started with bone pain and then the tip looked bruised. Eventually that toe developed an ulcer on the tip, which took 9 months to completely heal. In Jan. 2020 a toe on my other foot also developed bone pain and turned red from the top joint to the tip. This was during the winter and often my toes would be a blueish-purple color and icy cold. From the orthopedic dr, I was referred to a vascular dr. The vascular dr ordered several tests but found nothing wrong. He had me try nifedipine (instead of my usual lisinopril BP med) and that made things really worse! He suspected a vasculitis disease and referred me to a rheumatologist. That was April 2020. He ordered extensive bloodwork which ruled out many diseases and didn't really pinpoint any particular disease. He requested the skin biopsy by the dermatologist (June 2020). However, my rheumatologist was not satisfied with the diagnosis of MCTD, so kept searching further. Of course, the summer time brought with it the flaring of my feet, turning red/burning/stinging. I quickly learned I had to stay indoors in the A/C. Even if I got too warm doing things in the house, I would still start flaring. Sometimes it would be continuous for 2 days and nights. Sometimes it would be every evening/night for a week. Sometimes only 1 foot and then the next night the other foot would flare.
In addition to the foot/toe problems, I continue to have peeling lips and sensitive inner cheek tissue. At one point I had to start pureeing fresh veggies so that I could eat them w/o a large blister appearing immediately on my inner cheek. Now I have to be very careful eating fresh, hard vegetables or fruit and usually cut them into small pieces. My left hand also has a redness to it, especially the knuckles. And the knuckles have small bumps that are also red. My nose always has a flushed red appearance. My outer ears sometimes burn at night and often I sleep with a special pillow-with-a-hole. My one eye is always tearing and often gets a white/yellow discharge during episodes when my feet and other symptoms have been really bad. I get daily joint pain in one knuckle and my hips and outer ankles. My calves/Achilles/behind my knees has been very tight, making it difficult to rise from bed in the morning and get up from a chair after sitting awhile. I no longer can walk outside – only a 5 minute walk on my deck. I used to be an avid walker and hiker. I do use a recumbent stationary exercise bike for 10-15 minutes at a relaxing pace and do stretching exercises. But I have to do the exercise in the morning while it is still cool enough to not start my feet flaring.
Before all this started, I had 2 major medical problems. One was hereditary severe nocturnal foot/shin/calf cramps and daytime calf fasciculations (diagnosed as Restless Leg Syndrome, even though I didn't really meet the criteria). It started in 2014. This was controlled for a long time with medications (pramipexole and clonazepam). I am no longer taking those. I no longer have the severe leg cramps due to the 17 pounds of unintentional weight loss I experience during my unusual symptoms. Even though I have a great appetite and eat as much as I used to (yet exercise minimally), I have only been able to gain back 3 pounds. The other problem that occurred prior to my unusual symptoms was the diagnosis of possible thyroid cancer based on a fine needle aspiration. Surgery was scheduled in Jan 2020 and my entire thyroid was removed due to a large follicular cancer. I went through radioactive iodine ablation in March and are now cancer free.
I have been gaining a lot of important information already by reading on this forum, especially from the discussions on old posts of skylark15 and Barnclown. So thank you very much. I am open to any recommendations or thoughts all of you on this forum might have concerning my condition.
Lupus 
Is this lupus?
Is this lupus?
Is it Lupus? 
Unsure if this is lupus.
