Should I be asking about DM?
Hello! Apologies - the following turned into more of a rant / timeline than intended. TLDR - I have been looking for answers and really struggling when it comes to communicating with providers in a system I don’t understand. I want to know if my hands look familiar to you all, and whether I should advocate for more testing.
Dermatomyositis has been on my radar for a few months as I’ve struggled with fatigue, rashes, photosensitivity, GI / breathing / autonomic issues, burning sensations inside and out, and muscle pain. I never know how to answer the question, “any muscle weakness?” because I thought everything being harder, painful, and more exhausting was just a function of aging.
Anyway, I recently started taking gabapentin for suspected erythromelalgia after my dermatology referral. From there I was referred to cardiology for suspected POTS/dysautonomia. I’m pretty sure I’ve always struggled with these things to some extent, but I’m not sure why it’s so much worse now, or whether it explains the rest.
As the general redness and heat subsided due to the medication (yay!), the differences around my knuckles have become more prominent. Pictures attached.
A few months ago, my doctor didn’t think the rheumatology referral was necessary if dermatology didn’t, which was all good with me. A few basic labs ran (CBC, CMP, ESR, CRP) and all within normal ranges. But there have been changes in the skin, and I’m preparing to follow up with dermatology.
I’m hoping to get a sense of whether this community thinks this looks like Gottrons, and if asking the derm specifically about DM makes sense? If so, what questions would you ask? What labs would you expect they run? Or, any other thoughts you have are welcome! I have similar purple coloring over my knees. My elbows are more red. My eyelids are certainly getting darker, and swollen, but I’m not sure if they’re purple or just covered in visible veins.
I’m just having a hard time communicating in appointments — my goals and symptoms won’t match the notes, I get referred and tested without really understanding why, and providers seem distracted by my mental health or neurodevelopmental diagnoses. I want to advocate for better investigations of my symptoms before they’re explained away, or I burn out from the referral rigamarole. Theres a history of early death from heart attack and colon cancer in my immediate family. I just want to make sure we’re not missing something.
I apologize that what was meant to be some specific questions for a specific community became a wide-scope rant, but I appreciate you reading this and any thoughts you have! Take care 💖