New here- 28 and suffering

hi everyone, I’m 28 years old and I was “quietly” diagnosed in 2012 with dermatomyositis by my old rheumatologist, meaning it was written in my medical notes and I never was informed until about 2 years ago. I stopped seeing that doctor and got a better one, but he was scratching his head and didn’t necessarily agree with a diagnosis of dermatomyositis. at my last appointment with him, I was having a flare up with my hands in the exam room and he suggested erythromelalgia; that was the last time I went to him after he told me he can’t help me and suggested a doctor in NYC that I have an appointment with in 3 weeks. 4 years ago I had a gottron papule biopsied on my finger by my awesome dermatologist and it came back positive for a possible unknown autoimmune disease, but the test results were never discussed with me by either rheumatologist.

in the last 6 months, my hands have gotten absolutely worse than ever before. I am now sleeping with a tube of O’Keefe’s by my side every night to coat my hands from the skin splitting. in the summer I will get a bad rash from just 5 minutes under the sun. I flare up at least twice a day, more when I’ve been moving my hands and arms, I’ve gotten more gottron papules and nodules on my fingers, with partial or one whole hand being ice cold and the rest/other hand burning hot. I don’t ever walk without socks but my feet also get the same way, but not as often as my hands. Part or all of my ear will also be red, along with a malar rash on my face.
my muscle weakness from the dermatomyositis has increased so bad where I get muscle chest pain near the end of my day. I can’t even climb up a flight of stairs, lift my arms above my head to reach, or carry 5 lbs down an incline without severely getting out of breath for 2 hours.
I’m sure the dermatomyositis and erythromelalgia are somewhat linked together, but I’m experiencing a double dosage of symptoms every single day. I’m really at my wits end.
I’m not on any medication for anything other than doxycycline and a controlled stimulant.

I’m sorry you’re having so much difficulty. Sometimes stimulants worsen erythromelalgia symptoms, so that might be something to look into.

I am going to ask my doctor at my appointment. I’ve been on them for 20 years and on the same medication for 17 years. even when completely detoxed off, I have the flare ups.

I am sorry to hear you are suffering. Your case does not sound like a textbook EM case. It seems as though you have some underlying autoimmune condition that is causing both skin conditions. You might find benefit in looking up Dr. Jay Cohen’s supplement list on this site to try some more mild treatments with the guidance of your doctor. It is possible that your autoimmune condition could be affecting the endothelium and autonomic control of your blood vessels and trying some simple therapies that he discusses might be worth a go.

Also, doxycycline and stimulants can worsen EM, with doxycycline having a known side effect of skin redness and irritation.

hi Joe. I wean myself off of doxycycline for 2 weeks every month to get laser hair removal (so it doesn’t cause burns) and I still have the flare ups. as a matter of fact, I’m off the medicine right now and in the last 10 days I’ve had a nodule on my finger grow and change shape every day and I’ve had my usual daily flare ups.
I was tested for Sjogren’s by my dermatologist and this came back negative. it concerns me that my dermatologist is more of a rheumatologist than my actual rheumatologist is- dermatologist says I have an obvious autoimmune disease but the 1st rheumatologist says I have nothing wrong with me despite her being the one that entered dermatomyositis into my patient chart. 2 years ago I had my entire finger inflamed and spreading up to the nail and had to have an emergency visit to the dermatologist, who then alerted rheumatologist 1. Rheumatologist 1 had her receptionist call me right away for the next soonest appointment and when I went in she asked “why are you here?” and told me nothing is wrong. I’m glad she retired.
Rheumatologist 2 (the one that suggested erythromelalgia) didn’t seem like he took any of my medical history into consideration and I don’t think he ever followed up on my biopsy from the dermatologist.
I’m praying my appointment with the new doctor in 3 weeks brings me at least 1 answer.