Link to Part 1 | Link to Part 2 | Link to Part 3 | Link to Part 4 | Link to Part 5

🏃‍♂️ Day-to-Day Living and Surviving With the Disease

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!

🧱 Applying the Positivity to the Muscle

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.

🤍 Give Yourself Permission to Grieve, Give Yourself Grace

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!!!

 

 

Link to Part 1 | Link to Part 2 | Link to Part 3 | Link to Part 4

 

🏃‍♂️ Rebuilding from Scratch: PT & Exercise

What was life like in the early days of this disease?

 

When it came to my legs and walking, I constantly found myself remembering back to when my children were toddlers learning to walk. They were shaky, they wobbled, and they constantly braced themselves against the wall for support. Because dermatomyositis was causing my body to literally eat its own muscle, I was watching severe atrophy happen in real-time. I was reduced to shuffling just to get around out of sheer fatigue and pain. The soles of my feet hurt constantly. Walking too fast hurt, walking too slow hurt, and simply standing was agonizing.

 

Then came physical therapy for my arms and legs. Coming from a background of training in martial arts three times a week, starting PT was a massive lesson in humility. I went from throwing heavy strikes to barely being able to lift a 2-pound dumbbell.

 

Our muscles had withered away so dramatically that we had to start from absolute ground zero. In the beginning, "exercise" didn't mean working out. It just meant basic stretching to keep my joints from freezing up, and doing tiny, low-impact movements to remind my nervous system how to activate my limbs.

 

I’ve always been taught that "motion is lotion" for the body. But because of this disease, everything was tight, weak, and incredibly difficult to stretch. There were days I wanted to throw in the towel out of sheer frustration. Waking up feeling like your arms and legs are made of jelly and strapped with 100-pound weights is all-consuming. As we each grieve the loss of our bodies and functions, it is so important to remember that this is not only a physical burden, but a massive mental one.

 

The first thing I had to come to grips with was that I could no longer just jump on a machine at the gym and start moving weights. That mental shift was huge! We take for granted what our bodies can do, but baby steps were now my new norm.

 

I had to learn that any motion, any weight, or getting another inch closer to touching my toes was a victory compared to yesterday. I started doing slow, modified body weight movements - climbing one stair at a time, doing quarter-depth squats, and quarter-push-ups. ANYTHING just to get the body moving.

 

Every single day, I slowly stretched. I did dead hangs on my pull-up bar and constantly tried to touch my toes. As the drugs finally got my systemic inflammation under control, my flexibility slowly increased right along with my strength.

 

Day by day, week by week, month by month, I stuck to the most basic routines. There were days that felt like one step forward and five steps back, but the key is never giving up. Dermatomyositis wants us to give up and let it ruin us. I taught myself that every setback was just an opportunity to keep driving forward.

 

Counting every additional pound I can add to my workout motivates me - it is another win for my body. Today, I am up to a 10-pound kettlebell and a sandbag as my preferred workouts. What works for me may not work for everyone, but I am choosing not to try and become some buff gym rat. I am focusing entirely on regaining and building functional strength - the kind of strength that helps me live a better life on a day-to-day basis. FIND YOUR PATH AND FORGE FORWARD!

🏜️ Skin: Living Like a Raisin & Raynaud's

While my muscles were withering, my skin was at its absolute worst. Looking back now, I can honestly say I felt like a human raisin.

Not only did I have all the classic rashes on my hands, legs, and face - the swollen "moon face," the deep purple "raccoon eyes," and the blotchy face effect—but I was basically a walking dandruff machine. Every single morning, my bedsheets and blankets were completely covered in a layer of my own dead, flaking skin. My body existed in a constant, painful, dried-out state.

 

To make matters worse, the dermatomyositis triggered Raynaud’s phenomenon. My fingertips were in constant, pain. Touching anything—and I mean anything—hurt. It felt like my fingers were literally exploding with any sensory touch. Simple, everyday tasks became a minefield of severe nerve pain.

 

❤️ It’s All About Family and Loved Ones

You cannot fight a disease like MDA5 dermatomyositis alone. You just can't.

 

Through every single dark day, my family was my anchor. They carried the heavy mental and emotional weight when I was physically too weak to even lift my own arms.

 

This disease completely robs you of your independence. It forces the people who love you into heavy care taking roles they never asked for. Seeing their resilience, love, and unwavering support gave me the strength to keep pushing through the grueling physical therapy, the nerve pain, and the brutal medication side effects.

 

We fight this disease to get our bodies back, but more than anything, we fight to get our lives back for the people who stood by us when everything was burning down.

 

Thank you all for reading, for fighting alongside me, and for sharing your own stories in the comments.

 

WE CAN'T LET THIS WIN!!!

 

 

Link to Part 1 | Link to Part 2 | Link to Part 3

The drugs are kicking in!!! End of story, right???

Man, I wish.

That road is longer than anyone can even imagine. Immunosuppressants and heavy steroids don't just fix you overnight. It is an agonizingly SLOW process with this disease. For me, the drug journey has been a 4-year battle, and I'm still counting.

In the beginning, whatever healed was just an added plus. I learned to count my blessings for every single inch of my body that hurt just a little bit less, day by day.

But when I look back at the worst of it, I always tell people the same thing: I actually had the easy part.

I just had to lay there, grit my teeth, bear the pain, remember to take my meds, and force myself to eat. My family had the real nightmare. They had to sit by and helplessly witness my body literally eating itself from the inside out. They watched my muscles waste away, watched the weight plummet off me, and had to handle the terrifying emotional weight of the crazy inflammation raging through my system.

Here is how we actually started navigating the long road back.

💊The Disease’s Side Effects & The Heavy Toll

Pre-disease, I was fit and active. I was training in the gym almost every day between weight training and martial arts (Krav Maga). I was a highly productive professional. Then, what felt like overnight, walking, breathing, and just raising my arms became difficult and utterly exhausting.

The sun became a flat-out enemy. It further zapped my energy and triggered severe skin issues. I walked around with dark purple raccoon eyes, blotch marks, and a constant, burning rash.

The reality of it all? The pain and lethargy were hard, but the loss of physical capability was the absolute worst. Slowly, my body started breaking down in ways I didn’t think possible:

• The Hair Loss: I was losing hair in massive clumps just getting up from my pillow, leaving a literal trail of hair down our hallway. Even my hair follicles hurt to the touch.
• Voice & Throat Problems (Dysphagia): I lost my voice completely for a week. When it came back, I sounded squeaky, like a cartoon character. Swallowing issues kicked in hard; if I drank water too quickly, my throat would back up, and I would violently cough and gag.
• The Muscle Atrophy: My leg muscles gave out to the point where I had to shuffle when I walked, looking like an 80-year-old. I went from a fully functioning, independent adult to feeling like a toddler.

Prednisone is a deal with the devil. The 80mg dose forcefully put out the fire in my body, but the cost was steep. It absolutely wrecked my GI tract. I was dealing with constant stomach distress, a swollen "moon face," and intense mood swings—all while trying to balance the Cellcept and Chloroquine.

But as brutal as the side effects were, the drugs were a miracle. Slowly, the crushing weight on my legs started to feel a fraction lighter. The pain in the soles of my feet, which felt like constantly walking barefoot on sharp rocks, lessened week by week.

The violent coughing fits from the Interstitial Lung Disease (ILD) began to space themselves out. I went from coughing every 10–15 minutes, to hourly, to now just occasionally. Yes, it is still there, but at least my wife can sleep now without me constantly coughing in her ear. It wasn't a cure, but it was a shield. It bought me the time I needed to stop dying and start figuring out how to live again.

🥦You Are What You Eat – Diet, Diet, Diet

Just like when you deal with data systems: the better the data you feed a system, the better the output you get. The body is the exact same way! Feed yourself garbage, and your body will eat itself away and fail to perform. When your body is in a hyper-inflammatory state, what you put into it matters immensely. I quickly realized that if I wanted the meds to work better, I had to completely clean up my food intake.

I shifted to eating clean and moving toward a strict anti-inflammatory diet. It’s harder than it sounds, and it takes massive dedication and patience.

• Start Small with Trial and Elimination: You need to determine what your specific body reacts to. Remove a certain type of food for a few days and see how your body responds.
• Cutting the Sugar: This was the first major change. No sugary drinks, sodas, or energy drinks. I switched to club soda or simple carbonated water, adding a slice of cucumber or fruit to give it a natural boost. I also cut out candy and sweets—which was brutal for me because I am an absolute apple pie fiend. You’d be surprised by how much hidden sugar is in the "healthy" food we get tricked into buying.
• Gluten & Wheat: The villains that are everywhere! I started cutting out bread and wheat, sticking to whole foods. Now, I will say that I am not 100% gluten-free, but a big culprit for me was my heavy consumption of bread. Making the switch to gluten-free bread and eliminating wheat wherever I could made a massive difference. After the first month, I felt significantly better from an inflammation and pain perspective.
• Hydration as a Full-Time Job: I had to drink water constantly to flush out the massive amount of toxins and medications cycling through my liver and kidneys. I cannot emphasize staying hydrated enough. Because the sun is not my friend, I noticed my body required an immense amount of water just to not feel like a saltine cracker.

Thank you all for reading, for sharing your own stories in the comments, and for being part of this community.

WE CAN'T LET THIS WIN!!!

Link to Part 1 | Link to Part 2

Right before my formal diagnosis, I was at the absolute height of a catastrophic dermatomyositis flare.

At this point, my hair was falling out in massive clumps. I would wake up with hair coating my pillow. We have hardwood floors at home, and just walking through the house, I would leave a literal trail of hair behind me. Even my hair follicles hurt to the touch.

Showering became a daily test of pain tolerance—the water hitting my arms, legs, and scalp felt like pure torture. To make matters worse, the soles of my feet burned constantly. Standing, walking, or just letting my bare feet touch the floor tested every single fiber of my being. Everything just hurt, and absolutely nothing helped until we finally got the formal diagnosis.

📋The Baseline Protocol

Once the biopsy came back, my rheumatologist, Dr. Washington, finally got me a formal confirmation of the disease. To stop the head-to-toe fire raging in my body, she started me on an aggressive baseline protocol:

• Prednisone (80mg): A massive dose to forcefully hammer down the systemic, head-to-toe inflammation. It fixed the acute fire but wreaked absolute havoc on my GI tract until I finally managed to wean off.
• Cellcept (2000mg daily): An immunosuppressant introduced immediately to try and halt the rapid progression of my Interstitial Lung Disease (ILD) lung scarring. This is my "forever" drug. Because it drastically raises skin cancer risks, sunscreen is my constant companion now. I basically live the life of a vampire.
• Chloroquine (200mg): An antimalarial used off-label to target the brutal skin rashes, heliotrope eyes, and Gottron’s papules. Because my family is highly susceptible to glaucoma—and this drug increases eye pressure—I had to see an ophthalmologist every 3 months. Getting off this after 2 years was a massive relief.

Getting these scripts was a massive turning point, but as anyone with an autoimmune disease knows, getting the drugs is only half the battle. Next comes the grueling process of forcing a broken body to move again.

In my next post, I’ll dive directly into the physical therapy stage—how I started rebuilding my muscles from absolute scratch, and the specific routines that helped me claw my way back to a livable pain baseline.

Thank you all for reading and fighting alongside me. WE CAN'T LET THIS WIN!!!

I wanted to build a safe spot for everyone to vent, share, and connect—whether you are just now getting diagnosed, sitting in the "diagnostic maze," or are already deep into the journey.

There are so many things this disease steals, robs, and deprives us of. I wanted a space for EVERYONE to start taking our power back! I am finally feeling stronger, and I want to use that energy to document and share:

• How I got here: Documenting my personal journey (from a 35-lb weight drop to tendon ruptures).
• Learnings on what works (and what doesn't): Sharing what I've discovered regarding foods, stretches, fluids, and daily management.
• Accessible Exercises: Easy movements we can do to regain or maintain our mobility. So many of us watch our bodies wither away from this condition—WE CAN'T LET THIS WIN!!!
• Upcoming Treatments: Over the next few months, I am gearing up for a mini-medical tourism journey to explore stem cell therapy and other holistic treatments. I plan to take everyone along with me for the ride.

⚠️ DISCLAIMER: I am not a medical professional, nor am I advocating or prescribing any specific treatments for anyone. I am strictly here to share and document my personal journey. Always consult with your specialist/rheumatologist before trying new treatments.

📸 Photos Coming Soon...

I wish I had taken more photos to show the brutal physical effects of this disease early on. However, I am digging up pictures from my 35-pound weight loss phase, as well as my surgical scars. When I get a bit braver, I will post them here to show the raw reality of what we fight. Stay tuned!

💬 Let's Build This Together

I hope this subreddit becomes a true two-way street where we can learn, explore, and vent together. Thank you for being part of the very first wave. Together, let's make r/DermatomyositisLife amazing.

Drop a comment below and introduce yourself—where are you at in your journey today?

I wanted to build a safe spot for everyone to vent, share, and connect—whether you are just now getting diagnosed, sitting in the "diagnostic maze," or are already deep into the journey.

There are so many things this disease steals, robs, and deprives us of. I wanted a space for EVERYONE to start taking our power back! I am finally feeling stronger, and I want to use that energy to document and share:

• How I got here: Documenting my personal journey (from a 35-lb weight drop to tendon ruptures).
• Learnings on what works (and what doesn't): Sharing what I've discovered regarding foods, stretches, fluids, and daily management.
• Accessible Exercises: Easy movements we can do to regain or maintain our mobility. So many of us watch our bodies wither away from this condition—WE CAN'T LET THIS WIN!!!
• Upcoming Treatments: Over the next few months, I am gearing up for a mini-medical tourism journey to explore stem cell therapy and other holistic treatments. I plan to take everyone along with me for the ride.

⚠️ DISCLAIMER: I am not a medical professional, nor am I advocating or prescribing any specific treatments for anyone. I am strictly here to share and document my personal journey. Always consult with your specialist/rheumatologist before trying new treatments.

📸 Photos Coming Soon...

I wish I had taken more photos to show the brutal physical effects of this disease early on. However, I am digging up pictures from my 35-pound weight loss phase, as well as my surgical scars. When I get a bit braver, I will post them here to show the raw reality of what we fight. Stay tuned!

💬 Let's Build This Together

I hope this subreddit becomes a true two-way street where we can learn, explore, and vent together. Thank you for being part of the very first wave. Together, let's make r/DermatomyositisLife amazing.

Drop a comment below and introduce yourself—where are you at in your journey today?

Getting the initial diagnosis was one thing, but the specific antibody blood work changed everything. I tested positive for MDA5, a particularly aggressive variant of dermatomyositis. Not only does it trigger severe skin involvement, but it rapidly attacks the lungs.

This brought on Interstitial Lung Disease (ILD) and its brutal realities:

• Severe shortness of breath: At my worst, I couldn't walk to the restroom without gasping for oxygen.
• 24/7 coughing fits: The violent fits permanently scarred my lungs. Today, the fits have lessened, but I'm still a non-stop phlegm machine.

The Skin Flare-Ups:

• Heliotrope Rash: A deep purple rash across my face that gave me severe, swollen "raccoon eyes."
• Gottron’s Papules: Purple, raised bumps across my knuckles that split into painful open sores and thick calluses.

I existed in a haze of persistent brain fog, crushing lethargy, and widespread pain.

The Breaking Point: 4 Ruptured Tendons Because of the extensive tissue and muscle degradation, my dominant right hand—the one I used to train martial arts with—suddenly suffered four ruptured tendons. My hand completely drooped, totally useless.

I needed immediate surgery, but my weight had plummeted and my lungs were so weak that I was too high-risk for anesthesia. I had to wait 4 grueling months just to stabilize my breathing before they could safely operate.

The repair was only a semi-success; it fixed the cosmetic "droop," but 3 years post-op, permanent muscle damage means I still struggle to use my hand properly.

The Medication Cocktail: Fighting MDA5 requires an aggressive, multi-cocktail immunosuppressive attack:

• Prednisone (80mg): Fixed the acute inflammation but wreaked absolute havoc on my GI tract until I finally weaned off.
• Cellcept (2000mg daily): My "forever" drug to halt the progression of ILD lung scarring. Because it drastically raises skin cancer risks, sunscreen is my constant companion. No beach days or outdoor events. I basically live the life of a vampire.
• Chloroquine (200mg): An antimalarial used off-label for the skin rashes. Because my family is highly susceptible to glaucoma—and this drug increases eye pressure—I had to see an ophthalmologist every 3 months. Getting off this after 2 years was a massive relief.

Apologies for the heavy text this time around! I’ll save my physical therapy journey for Part 3. Thank you all for reading and following along.

This is my first post! Thank you all for letting me share my journey with dermatomyositis.

Where to even start? The nightmare technically began in 2019, though I didn’t recognize what was happening at the time.

A little background on me: I’m 59 now, but back in 2019, I was working as a global marketing professional in Silicon Valley. I was also training in Krav Maga 3x a week. I was incredibly active, healthy, and enjoying life.

The early signs (Summer 2019): It started with blotchy, dark purple marks covering both of my shins. Because of the Krav Maga, I assumed they were just bruises from heavy bag work. But the pain stopped, and the purple blotches stayed. After a few weeks, I saw a doctor who dismissed it as a simple skin rash. Looking back, I was also dealing with fatigue and brain fog, but I never connected the dots that something was truly wrong.

The breaking point (2022): This baseline pattern dragged on for a few years until 2022, which is when my life completely changed for the worse. I woke up one day and could barely move my legs—it literally felt like they were strapped with 100-pound weights. The crushing fatigue hit, and those distinct purple marks were now on my face, hands, and legs.

The Diagnostic Maze & The 35-Pound Drop

Things escalated quickly when I suddenly started losing 5 pounds a week. I was down 35 pounds total before I was finally referred to a rheumatologist, Dr. Washington.

Prior to landing in her office, I went through a terrifying battery of tests—cancer screenings, HIV tests, and every blood panel imaginable. Dr. Washington looked at my symptoms and immediately ordered a muscle and skin biopsy.

In October 2022, I finally had a name for it: Dermatomyositis.

I hit a wave of relief and dread all at once. Relief because we finally knew what we were fighting, but dread because... what actually was this disease? What did it mean for me and my family? What did treatment look like? My head was spinning with questions and an unquenchable urge to research every detail.

Thanks for staying with me through this first post. I’ll continue documenting the journey in my next update, focusing on the medication and physical therapy stages!