Hello! I have DM and was recently diagnosed with panniculitis with lipodystrophy. I was wondering if anyone else has a similar diagnosis and is willing to share their experience. Thank you!
Hi, can anyone suggest good docs - rheumatologists / neurologists who are proficient in this area...
We haven't been able to get a confirmation on diagnosis too for PM/IBM for my father (62yo).
Any experience with Dr Jyotsna Oak (Mumbai)
Or Dr V Sarath Chandra Mouli
for this condition?
Any other doctor recos?
I've been experiencing myositis symptoms for 3 months now and it got progressively worse.
All my symptoms match with the disease yet NO ONE takes me seriously, i'm unable to even climb the stairs or get up if i sit down on the toilet yet my GP gave me ibuprofen?? I've tried to get an appointment with a rhumatologist and there's none before november, i've tried to see a neurologist but haven't even gotten an answer, i went to the ER and they told me it wasn't an emergency. I am beyond exhausted and would just like for someone to take my suffering seriously.
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 💖
Hello,
My wife recently had a biopsy of a lesion on her foot, and I wanted to post up pictures of it in the hopes that maybe someone here could tell if they’d had a similar type of lesion in a similar spot. The results of the biopsy said the sample was consistent with connective tissues disease such as cutaneous lupus erythematosus or dermatomyositis.
This is only lesion of this type that she has. It seems to be lighter sometimes and darker other times. She does have muscle symptoms, but hasn’t had muscle enzyme tests yet. She gets very mild redness over the joints of her hands, but it’s very mild and comes and goes throughout the day, so we’re unsure if that’s related at all.
We’re working our way towards getting her the testing necessary to figure out more, but the waiting is difficult, so I was hoping to get some perspective on what we do know in the meantime.
Does anyone here get Gottren’s papules on their feet? Does this lesion look similar to those you’ve had?
I, 30M, just had my Anti-Jo1 come back positive.
I've been having intermittent fevers over the past 1.5 years with no other symptoms. Recently started having wrist pain as well as a burning sensation on my skin when sitting still.
I have my rheumatologist appointment tomorrow to go over my results and from what I've read I assume we'll need to do a chest CT, lung capacity tests and maybe a muscle biopsy.
My Anti-Jo1 was borderline last year, but since two reumatologists were pretty dismissive about it, I didn't really dig into the diagnosis that much. However, now that I'm positive, I've been reading up on Antisythetase Syndrome and the other possible myositis-related conditions.
The last week has been hell. I've lost 5kg in 7 days, have zero to no appetite and no will to do anything. Every minute feels like an hour. I tried watching movies, reading books, working, but my mind keeps going to what's ahead of me and the limited life I'm going to have to live.
Nothing has really changed too muhc physically and I was in the gym 5x per week just a week ago, but the mental stress of this is killing me. I've started researching assisted suicide companies in Switzerland for crying out loud. Doesn't help that my gf is out of the country for almost a month so I'm stuck home alone. Haven't been going out because I suspect UV exposure is a trigger for me so I'm sitting here in isolation.
I also had cancer back when I was 18 and kinda felt like I'd done my share of suffering. Can't help but have "why always me" thoughts rn.
How did you deal with your diagnosis? I'd appreciate whatever tips you have...
A relative was diagnosed with myositis (probably polymyositis, but her neurologist and rheumatologist said they couldn't be sure) and after negligible improvement from prednisone and ivig is now looking into myositis clinics and centers for additional support.
Has anyone traveled to myositis clinics at Johns Hopkins, Mayo Clinic, OHSU, National Jewish, or others? Any specific doctor recommendations? What were your experiences like? How often did you go and for how long at a time? Did the myositis clinic doctors work with your local doctors for continuity of care between trips out?
Link to Part 1 | Link to Part 2 | Link to Part 3 | Link to Part 4 | Link to Part 5
What is life like now?
Whether or not we want to admit it, we need to take the time to grieve for our old bodies and our past abilities. I’m not trying to be a "Debbie Downer" or to imply our lives now suck. In fact, I’m saying the exact opposite: say goodbye to the old way of doing things, and embrace the new.
Yes, we are slower and generally weaker than before, but that doesn’t mean we stop living! I focus on every single new thing my body enables me to do today that it couldn't do yesterday, and that is what keeps me going.
I am not the hippy dippy type and not the type to say, "Just keep a positive attitude and everything is going to be perfectly fine." NO! Some days I wake up and say, "SCREW YOU, DM. Today absolutely sucks. Everything hurts... even breathing hurts.".
I am allowed to have those days. I am entitled to those days. But it just can’t become our perpetual mindset. Those days just have to get fewer and further apart. It's exactly like nutrition: Garbage In, Garbage Out. Negativity In, Negativity Out. Grieve, dust yourself off, and move forward!
When I was at ground zero, shuffling like a toddler, dealing with severe muscle atrophy, and struggling to lift a 2-pound dumbbell. I had to completely reframe how I looked at progress.
Because this disease makes everything so tight and weak, consistency becomes your only weapon. I had to fight for every single second of mobility and strength. Day by week, month by month, I stuck to the most basic routines just to keep my limbs moving.
As the medications finally got my systemic inflammation under control, I realized that practical positivity meant celebrating the tiny increments. It meant recognizing that a fraction of an inch closer to touching my toes, or a dead hang that lasted five seconds longer, was a massive victory against a disease that wanted to freeze my joints completely.
The 10-pound kettlebells and sandbags I can lift today didn't happen because of an overnight miracle; they happened because I celebrated the 2-pound wins first.
I know I might sound like a broken record, but there will be days you feel like you took one step forward and five steps back. When those days happen, you have to give yourself permission to grieve, and you have to give yourself grace.
It is okay if you are slower and weaker today than you were yesterday. Look at the bigger picture: you are still doing infinitely better than where you were at absolute rock bottom.
Please never expect overnight miracles. Take it one single day at a time, focus entirely on the functional strength that gives you your independence back, and you will get through it.
FIND YOUR PATH AND FORGE FORWARD! WE CAN'T LET THIS WIN!!!