In December of 2018, I'd developed a bright red, hot to the touch rash on my face. I tried several things at home trying to get rid of it - Benadryl cream, cortisone cream, several different lotions. Nothing worked at all. So in early January, I went to see my primary doctor, who prescribed an antibiotic cream and oral antibiotics, which did nothing. I went back, blood labs were done, and it was found that I had a positive, and high ANA Titer, so I was sent to a Rheumatologist. My primary doctor thought I might "just" have Lupus, but said figuring that out was up to the Rheumatologist.
Because of so few Rheumatologists (an so many patients to treat) available in my area (also true of most areas in the US), I had to wait until April 2019 to actually see one. By then, the facial rash was still inflamed but now I had added a painful and burning rash on my neck, chest, and upper arms. My muscles were weak - just picking up a coffee cup felt like bricks. My fingers had hard bumps on them and I had redness and swelling around my fingernails. The Rheumatologist that I saw told me that I had some characteristics of Lupus, but that I also needed to see a Dermatologist in order to have a final diagnosis. He told me to stay out of the sun as much as I could, and placed me on Plaquenil. I left there pretty confused and unsure of what was actually happening. But, I did find a Dermatologist and after some more waiting for an appointment, saw her in early June 2019. She looked the rash over and performed a biopsy of the rash on my chest, and a week later, I went back in and was told that I had Dermatomyositis - something I had never heard of before. She told me it was fairly rare and advised that her next step would be to find out if this was related to Cancer as some types of Dermatomyositis can be secondary to certain forms of Cancer (talk about inciting panic!). She gave me a high powered steroid cream for the rashes on my neck, chest, and arms, and one slightly less powerful one for my face and off to labs and scans I went.
A month later after being poked and prodded plenty, my doctor was confident that there was no Cancer involved and I had another appointment with her to go over all the ins and outs of this disease. I learned that sun makes this disease more active (which is bad). The more active the disease gets, the worse the symptoms like muscle weakness, difficulty swallowing, hair loss, fatigue, brain fog, and physical stability issues would get. And of course, there is also still the chance of developing certain forms of Cancer within the first 5 years based upon the TIF1 Gamma and NXP2 antibodies that are present in my body. I'd have to be watched closely with repeats of labs and other tests on a regular basis. This was all so insane to me at this point.
Seriously, how do I suddenly have a disease that feeds off the sun? I was 39 at this point and it had never been a problem before. I have kids thriving in different outdoor activities - I can't avoid the sun! Sure, there are things I could do - stay on Plaquenil (hoping it works), long sleeve sun shirts, short sleeve t-shirts with SPF sleeves from the hand to elbow, long pants all the time, hats, sunglasses, wear 2 different kinds of sunblock, etc., but even doing all of things doesn't prevent everything. This disease was so bad at this point, that just walking outside my house in a t-shirt and jeans to get in my car in the driveway made my skin burn and itch from the rashes - and we're talking only seconds of sun exposure there. This was so frustrating! By the way, when I say this burns, its not a sunburn type burning feel, its more of a pouring alcohol on an open wound type of burn.
I felt goofy and weird going out covered head to toe in the summer. I got a lot of questions and comments from random people while I was out in public, even at times from friends and family, about how I can "stand" to dress like that in the heat or questioning whether I even needed to take these precautions. It was embarrassing and difficult to deal with, especially with this being so new to me and not having a full understanding yet of everything this disease was. I was constantly exhausted, having trouble doing simple things like push a shopping cart or standing up after sitting for a while. The rashes made me both physically uncomfortable and even more self conscious than I already was, so I started wearing a lot more makeup trying to cover them. But, to others, I "looked normal" and "just had a rash" - or maybe I just needed to "get back in shape". I'd felt like I lost control of my own life - and I was angry, confused, hurt - and so many other emotions were going on.
That's the story about how this all got started. I'll explore more about my journey with DM and other auto-immunes in future posts, but for now, I'll get more detailed about what Dermatomyositis is for those that may not know. The word Dermatomyositis is made up of two parts - Derma, meaning skin, and myositis meaning muscle disease. The short definition of Dermatomyositis is an inflammatory (auto-immune) disease marked by muscle weakness and skin rash - doesn't sound so bad that way, right? In the medical world, this disease is considered rare in the United States, with fewer than 200,000 cases reported each year (per the Mayo Clinic). In my job, I work with people all over the US and in other countries, and I have never met someone in my normal, day to day life that has this disease. I did join a support group for DM and have met people through there, but, I've never known of a friend, relative, colleague or even a friend of a friend that has this. That makes you feel kind of alone, especially at first when all the important people in your life don't understand what you're going through. People look at you like its no big deal, you just have a rash - but this disease is far more than that, and, as I mentioned above, this is no "regular" rash - it itches, burns, stings, and even feels like a bruise sometimes. DM Rash presents on the face, neck, and chest most commonly. I also have it on my upper and lower arms as well. The rash people see on the outside is just the tip of the iceberg of what is going on inside the body.
Inside, the body is attacking itself. Muscles and tissues become inflamed, and with inflammation of the muscle comes weakness and pain. Most commonly, muscles in thighs and hips are affected, but other muscle groups, such as those in the arms, neck, and even the esophagus can be affected (and then you choke on everything and that's a whole story of its own coming in a future post). As with pretty much any auto-immune disorder fatigue, brain fog, and just a general feeling of being run down are common, too. Have you ever been in a car wreck, and for several days after, feel stiff, sore, and weak? I have, and that's most relatable way I know of to compare what it feels like to have a DM/auto-immune flare. Getting from a sitting position to standing isn't easy, neither is moving in general. It's definitely slow going and limited activity when a flare hits you. The "brain fog" is like having a hobby - say crafting. You've crafted most of your life and you know a lot, and you sit down in front of your supplies to make something you've made several times before, and you've forgotten how to do it at that moment, and then frustration and panic sets in. Memories are fuzzy. When it happens in front of people, its embarrassing and makes you feel bad - and the irony is, you sure as heck remember THAT feeling forever. I remember a specific incident a few years ago in which I was talking to someone about something I've enjoyed all my life and suddenly, I could not remember what distinguished one item from another - and I felt like the person I was talking to just thought I was stupid and didn't really know anything. I still, a few years later, replay that conversation in my head. I KNEW everything about what we were talking about and right this second could tell you everything, but I was in a flare that day and the brain fog was bad at the time, and man, do I still feel like a bozo over that conversation! Yes, I've got to let that go, I know!
In addition to the normal and expected symptoms of DM, those of us with this diagnosis are put a risk for other complications as the disease progresses. Of course Cancer is one of those - most commonly ovarian or lung Cancer, but as a positive, the risk lowers each year after the DM diagnosis that you don't come up with Cancer. We're at risk for interstitial lung disease which causes scarring of the lung tissue, dry cough, and shortness of breath. Cardiovascular disease is another possible complication as DM can cause inflammation of the heart muscle. Because DM attacks muscles, the esophagus can be affected which will cause choking and aspiration pneumonia. DM can also cause significant hair loss, too. Muscle spasms can become a frequent visitor as well. And if all of these aren't enough, know that the majority of people diagnosed with an auto-immune disorder like DM, will also be diagnosed with at least one other auto-immune disorder at some point. My list is so far is Dermatomyositis, Vitiligo, Hashimoto's, Reynaud's, and Lupus - although the Lupus is officially categorized in my records as "mixed connective tissue disorder" because of the overlap of symptoms that I have. I'll dive into all of those other diagnoses in later posts at some point - I have a big list of things I want to cover!
So, what do I think are important takeaways today?
While Dermatomyositis can go into remission at some point, there is no actual cure - it's very likely not going to go completely away for the rest of your life.
If you have DM educate yourself as much as possible. Explore treatment options. Research. Find things that can help make your life more comfortable (I'll be sharing things that have helped me along the way). TALK to someone about how you're dealing with this because it is LIFE CHANGING.
If your friend or family member has been diagnosed with DM, support them as much as possible. Learn about the disease. Check on them. Listen to them.
To Learn more: https://www.myositis.org/about-myositis/types-of-myositis/dermatomyositis/ and/or https://autoimmune.org/disease-information/dermatomyositis/
What's next?
I'll be putting more posts up as soon as possible about my experience with DM treatments and deep dives into certain topics like hair loss, Gottron Papules, sun care, dealing with multiple auto-immunes, stress & anxiety and so much more. If there is a topic you'd like me to cover, please use the "contact me" link to send me your suggestion. I'd love to hear from you - so any questions, comments, etc., just let me know!
I will also be making some posts soon about "sunnier" topics - like holiday recipes, crafts, home décor, and travel to name a few. While DM and auto-immune issues are a big part of my life, I want to have some fun out here in the blogosphere, too. So watch for those posts! If you like what you're seeing here - please share my blog with your friends and family!
Until next time, take care!
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