So you’ve recent been diagnosed with dermatomyositis! Congratulations! (sort of) You are one of the very few lucky individuals to have this quite rare condition. It’s pretty likely that you never came close to ever hearing of dermatomyositis until your doctor gave you the diagnosis. Right? Probably. Most people haven’t heard of it – and most doctors don’t know much about it. I’d be willing to bet that unless you’re at one of a few hospitals in the country, you may be the first and only patient that your doctor has seen with this condition.  Coooooooool. Okay not so much.

Right away – I’d like to say that as scary as things might seem now – chances are good that you will be okay. Seriously. I know it’s freaky to have this condition and to read the few medical resources on the internet – but you’ll probably be okay. Maybe not right away… but eventually… hopefully. Dermatomyositis can be put into remission. With a combination of medications, physical therapy/rehab, and diet changes – you can get close to back where you were, or possibly even stronger. Because you will work harder than ever before to be healthy. After you recover, you won’t ever take your health for granted and you’ll do whatever it takes to be alive and well. 

Dermatomyositis presents itself slightly different for each individual. Some of the symptoms show up more in some people, while others less so. For me – I had all of the extreme muscle loss along with some extreme skin outbreaks – and ON MY FACE. There was no hiding my illness and it was just out there front and center for the world to see.

Dermatomyositis Skin Rash on Face

In the first six months I went from 210lbs to 160lbs and then three months after that I went from 160lbs down to 125lbs. I lost tissue from all of my major muscle groups – but the scary part was losing tissue from all of my ligaments and tendons. Everything in my hip area disappeared. My throat muscles and tongue too – I was at 50% swallowing ability and my windpipe didn’t fully close. I was very close to having a feeding tube installed into my stomach so I could eat and not get food stuck in my lungs.

Dermatomyositis extreme weightloss

I couldn’t walk anymore. I couldn’t lift my head cause my neck was so weak. And worst of all – my lungs had been damaged so breathing was a real issue. My blood-oxygen saturation (the amount of oxygen in your blood) hovered around 90% (normal people are 100%) and would drop down to the high 70’s if I stood up for a minute (when I could stand). As far as being in bad shape – I was right at that point where you start wondering if you’re going to actually live and survive all of this. I spent a month in the hospital while my team of doctors rushed to figure out how to treat me. So I feel like I have a little bit of an idea on what you can experience with this condition and what it can do to your body.

Dermatomyositis symptoms and effects

  • Extreme muscle loss
    • And I mean EXTREME. As in your body tissue becomes so inflamed that your muscles waste away to nearly nothing. All of your major movement muscles but also your stabilizer muscles. Which means that even if you are strong enough to move – you become a major fall risk – and you won’t be able to get back up. Because it’s not that you’ll always slip and fall, it’s that you won’t be able to ‘catch’ yourself from falling. And once you’re down there, even in you haven’t hurt yourself, you won’t have the strength to get up. I once fell just as I answered the door for a food delivery. I was home alone and the delivery person just kind of stared at me. 

  • Skin rashes/bumps/scabs/sun sensitivity
    • The ‘derma’ part of dermamyositis means skin – so this’ll present itself in some visible way through your skin. In my case, it was a bad butterfly rash all over my face, but also a sort of brown scaly layer of skin EVERYWHERE that eventually peeled away. Eventually. I still have lots of extreme dry skin and flaking but it’s managed by my meds, along with the changes I made to my diet. They say you’ll be photo-sensitive, which means that UV rays and sunlight can be very bad for you – but what I discovered after too much time and some dumb luck, was that I became allergic to SUNSCREEN. More allergic to sunscreen than the sun. I would get big, deep, gnarly scabs on my face that also ended up taking actual CHUNKS of skin away, leaving me with some pretty deep and noticeable scars. Be extra aware of any topicals you’re putting on your skin and how you’re reacting (or not). 
  • Organ damage
    • One of the scarier effects of dermatomyositis is that the inflammation can spread to your organs and damage them. That was the case with me and my lungs. I have permanent lung disease/damage now – but when things really went downhill, they had to do a lot to keep me going. Lots of time was spent in the ICU while they ran ALL THE TEST to see if anything else in my body was broken.

  • Cancer
    • They don’t know what causes dermatomyositis but one of the hypothesis is that it’s your body responding to an underlying/unfound/undiagnosed cancer that’s lurking somewhere in your body. Your immune system has picked up on it – even if all of our medical instruments can’t find it. That’s not always the case – but what is true is that there is a high incidence of people getting some form of cancer within the first 2-3 years of being diagnosed with this condition. I have two specific antibodies (MDA5 and TIF-G) that also greatly indicate that I’ll have/get/find cancer in my first two years after the initial diagnosis. So you’ll want to get regular full body cancer screenings for at least the first 2 years. While I was in the hospital they ran a full body PET scan (with the radioactive dye and such) – and then also a testicular ultrasound. Yeah – they looked hard for any cancer that may have been there.
  • Dysphagia 
    • Difficulty swallowing food. This can happen for a couple reasons – the two main reasons being that your throat muscles are so weak that they can’t move food down. But also that your windpipe won’t fully close and you risk aspirating and getting food/liquid down into your lungs – which would be VERY BAD. I had both problems. Not only was I more and more unable to get food down, and it would get stuck, but my windpipe wouldn’t fully close and I was constantly at risk of aspirating. I was lucky and didn’t get much food going down the wrong pipe – but what did end up happening is that my saliva/liquids would get into my lungs every night while I slept and then I would cough it all up for the first 3-4 hours upon waking. Coupled with weakened lungs, this was… a horrible experience everyday for two months. It got to the point that a doctor had a serious talk with me about possibly getting a feeding tube installed into my stomach. (I was like… f*ck that. I’ll get better.)
  • Hair loss
    • For whatever reason, my hair on top of my head started thinning out a lot but my eyebrows kept growing longer and longer and thicker. Weird stuff. 

  • Achy Joints/Pain
    • I was fortunate and didn’t have toooo many arthritis like symptoms. Any joint pain I felt was primarily in my hands. But many people do feel major joint pain akin to having rheumatoid arthritis. Particularly in their shoulders, hips, and knees.
  • Sore/Painful Muscles/Unable to move limbs
    • All that muscle loss = muscle weakness. Many people can’t lift their arms above their head, and eventually can’t even walk (I couldn’t.) You lose so much muscle in your trunk/core area that you can’t sit up or even hold yourself up while sitting. You kind of just slide down and melt into a puddle. Your grip strength goes away and you can’t open jars. Or your hands shake with tremors by just holding the weight of a mug of coffee because you don’t have the muscle strength to keep it steady.  
  • Calcium Deposits 
    • Little calcium deposits like large grains of sand will form under your skin/in your muscle tissue. You’ll be able to feel them and… short of surgery to remove them – there’s nothing that will make them go away. 
  • Raynaud’s Phenomenon
    • Your fingers/hands will become really sensitive and tender to temperature and pressure. They may change color in hot or cold – and may even be painful under warm/cold water. Just really sensitive to the point of where it hurts whenever they’re touched. Even putting your hands in your pockets can hurt. Sores may develop at your fingertips and burn-like looking marks and rashes may also appear all over your hands. Swelling and joint pain can occur as well. 
  • Chronic Fatigue
    • You will be tired. Exhausted. I know you might have felt tired in the past – but tired is nothing like chronic fatigue. It doesn’t compare and it’s hard to describe. You just feel this deep down in your bones exhausted. Sometimes you’ll even wake up exhausted. Or you’ll wake up fine, and once you get up – it hits you and you’re still tired. Sometimes showers or preparing food or getting dressed will knock you out for hours. And it’s not as simple as hydrating and eating more food. 

Dermatomyositis presents itself in each person a little differently. You may have some or all of the symptoms/effects described above. It may be difficult to be diagnosed with just those symptoms and they may not even appear all at the same time (until your condition has really progressed to the point of being dangerous.) One additional aid in getting a quicker/clearer diagnosis is an antibody test. Specifically Anti-Nuclear Antibody tests (ANA Test). The ANA test is one of the first test run to see if you might have an autoimmune disease such as Lupus, Sjrogens, or yeah Dermatomyositis. There are two levels, first the basic ANA test which says YUP or NOPE that you have these antibodies. And then there are the more specific, antibody test that identify which ones you have – which direct your doctor to do more test to confirm a specific diagnosis. 

That was a lot of information. 

I want to tell you though – you will be okay. You will be okay. You will be okay.