Tag: dermatomyocitis

Gym Results: Evidence of Dermatomyositis

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, symptomsTagged , , , , ,

A few weeks ago, my gym results were the only way I knew dermatomyositis caused my muscles to progressively weaken. Between February and late June, I lost almost half my upper body strength.

Muscle Loss of Strength (Percent)
Triceps 40.9
Biceps 45.8
Deltoids 33.3
Trapezius 45.8
Pectorals 52

My Gym Results

I have never been the strongest guy in any room. Standing 6’5”, built more like a wide receiver than a linebacker, most of my strength is in my legs. Before tearing and repairing my meniscus, I could leg press over 700 pounds.

But with a high metabolism and a sprinter’s frame, upper body strength has never been natural for me. I worked my ass off in the gym four to five days a week during my twenties just to have a body that halfway looked and felt like a man’s.

My peak strength came in summer 2016, aged 31. Since then, between work, age, and inconsistency, my strength dropped a bit. Since February, it fell off a cliff. By June, one push-up seemed impossible.

February 1, 2018 June 28, 2018
Activity Reps / Weight (lbs.)
Reps / Weight (lbs.)
Bench Press 10 / 135 10 / 65
Bicep Curls 10 / 110 10 / 65
Lateral Deltoid Raises 12 / 30 (15 each arm) 8 / 20 (10 each arm)
One-Arm Dumbbell Row 12 / 60 10 / 45
Seated Cable Row 10 / 120 10 / 60
Push-ups 20 / 215 1 / 215

Getting Stronger Every Day

With numbers like these, I have to be careful not to give up, to compare myself to the gym rats and roid ragers. I can only be who I can be.

When I look at stronger men at the gym, I remind myself my immune system is attacking my muscles, theirs is not. Worse, most anti-autoimmune drugs also induce muscle weakness. While they do reduce muscle inflammation, their benefits are almost immediately canceled out.

But the people at my gym barely notice. Some are weaker than me. I doubt those stronger care. In fact, two have even helped spot me while I embarrass myself at the bench press. They even offered sympathy for my disease.

Since June, I’ve made progress. I workout four to five days a week. I eat a high-protein, creatine-supplemented diet. I’ve gained strength in several muscle groups. Compared to my numbers in the right column above, I can do more reps with more weight.

June 28, 2018 October 15, 2018
Activity Reps / Weight (lbs.) Reps / Weight (lbs.)
Bench Press 10 / 65 10 / 75
Bicep Curls 10 / 65 10 / 85
Lateral Deltoid Raises 8 / 20 (10 each arm) 12 / 20 (10 each arm)
One-Arm Dumbbell Row 10 / 45 12 / 55
Seated Cable Row 10 / 60 10 / 90
Push-ups 1 / 215 5 / 215

Those five push-ups are sloppy, to say the least, but for now, it’s progress.

My Rudolph Nose

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, symptomsTagged , , , , ,

My nose glows red with a dermatomyositis rash like the mythical reindeer of childhood Christmases past. The moral of that story—at least the CBS claymation version—is that what seems a flaw, what makes one different, what subjects one to ridicule, may be a blessing in disguise. But humans are not reindeer. No bearded, red-suited legend is going to ask me to guide his sleigh come some unforeseen foggy Christmas Eve.

We had a web conference with video at work today. It was all too obvious to me with my nose glowing on the screen, I am not who I was. I don’t feel attractive. I don’t feel positive. I don’t want my girlfriend to touch me. I barely feel human some days.

Doctors tell me in time my hydroxychloroquine will help. It has helped a little, but not enough, not fast enough.

Still, I wait for true relief, for what after six months seems like waiting for a miracle. Still, I taper down my steroids. Still, my nose gets redder. The skin on my jaw itches so much it wakes me in the night.

Am I supposed to find meaning in a red nose? Inspiration? Am I supposed to thank God or curse nature? Am I supposed to search for some metaphorical St. Nick for some purpose in this suffering?

As the philosopher Walter Kaufmann, paraphrasing the philosopher Frederich Nietzsche, observes, nature is too well designed to lack purpose but too ill designed to demonstrate intelligence.

Yet, as intelligent, conscious beings, we think; we feel. Aware of our own fragility in the face of near constant chaos, we agonize; we suffer. Aware of our own imperfections, we criticize; we despair. We seek symmetry, predictability, stability, security, order.

So what do we do with our imperfections? Can we fix them? Should we fix them? Or do we embrace them, stare nature in the face, and tell ourselves we are more than our faults?

I may not have a red nose forever. But right now, looking at myself in a photo or a mirror hurts. I tell myself these rashes are not who I am. But right now, I see only who I used to be. I tell nature I have had enough.

Dermatomyositis and muscle weakness

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, symptomsTagged , , , ,

Nine out of ten times, dermatomyositis presents with heliotrope rashes and muscle weakness in the upper arms or thighs. Only weeks ago, I thought was the one in ten, the rarest of the rare in which my immune system attacks my skin, but not my muscles. Last week’s visit to the neurologist, however, shows I and my doctors were wrong: An electromyography (EMG) revealed inflammation in my biceps, triceps, and shoulder blades.

Though my immune system has caused some muscle weakness, the damage is minimal.

Truthfully, this changes little. I have long suspected something was going wrong with my muscles. In February, I easily could complete 30 consecutive push-ups. Then the rashes came. And by June, I couldn’t complete one.

Preliminary tests for muscle weakness involve the doctors checking clinical levels of strength. Can I stand up without exhausting myself? Can I push the doctors arms away with mine?

Both my rheumatologist and the dermatomyositis expert at Mayo Clinic checked these. But as the dermatomyositis expert explained, in rare cases, when this autoimmune disease affects strong young men, muscle loss is not obvious, especially in the clinic. For that reason, he ordered the EMG.

Minimal muscle weakness, maximum treatments

I am glad he did. Without the EMG, I would have had no evidence of muscle loss beyond push-ups and dumbbells.

Again, this changes little. The damage to my muscles is minimal. The neurologist explained muscle involvement in dermatomyositis as not an either/or, but as a spectrum and said I am still 90 percent amyopathic. That is, the inflammation in my arm muscles is minimal.

I am not letting this disease stop me from being and feeling like a man.

Plus, I have been living as though I my muscles are under attack. I take as much creatine as an Olympic bodybuilder. I changed to a protein-heavy diet. I go to the gym at least four days a week. I spend an additional day or two strengthening my core. I am not letting this disease stop me from being and feeling like a man. I can now do five push-ups in a row.

Visiting the dermatomyositis expert at Mayo Clinic

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, dermatomyositisTagged , , ,

Mayo Clinic Scottsdale looks like a corss between a Cold War military complex and a lost Frank Lloyd Wright building.

Mayo Clinic Arizona is nestled on the northeastern edge of Scottsdale in the desert foothills of the McDowell Mountains. Its main structure looks like a cross between an unmapped military complex and a lost Frank Lloyd Wright building. In a nod to Wright’s organic architecture, the campus blends in with the Sonoran landscape; southern Arizona staples like saguaro, pipe organ cactus, mesquite, and palo verde surround it.

My girlfriend and I drive past the sparse vegetation, then park and enter underground, reinforcing my comparisons to a Cold War military site. We take two different sets of elevators to the second floor.

Hospitals rarely, if ever inspire positivity or happiness. Those waiting next to us either have serious health problems or are accompanying someone who does. Many are in wheelchairs. Several are bald. Others, like myself, have mottled skin.

Mayo Clinic in Rochester, Minnesota is, by most measures, the world’s best hospital. U.S. News and World Report rank its sister campus, Mayo Clinic Phoenix-Scottsdale, eleventh in the United States. I remind myself as I look around, wondering how many of these people are here as a last resort.

Mayo Clinic Uber-Rheumatologist, Part I

Just like any other visit to a specialist, after being called back, a nurse measures my height and weight, and I put on a gown. I wait.

The physician’s assistant enters with a stack of paperwork—written testament to the amount of time I’ve spent over the past six months in doctor’s offices, labs, and imaging centers. Unlike many physician’s assistants, this woman’s thoroughness and knowledge of internal medicine is immediately apparent.

After reviewing my medical history, she spends another half-hour examining my muscles, rashes, and lungs. She finds no additional evidence of muscles weakness or lung involvement.

Mayo Clinic Uber-Rheumatologist, Part II

The doctor enters. In my mind, I’ve talked up his reputation and specialty as though he holds all the answers, but as I told my girlfriend that morning, he is not a miracle worker. But he does know more about dermatomyositis than all but a handful of other highly trained men and women.

The rheumatologist re-checks my muscle strength. He remarks my muscle strength is excellent, but unlike my regular rheumatologist, he notes when a dermatomyositis patient works out as much as me, it’s possible people do not notice the muscle regression.

I certainly did. I went from being able to do thirty push-ups to being able to squeeze out three. Of course, that weakness could be from all the corticosteroids I’ve needed to manage my condition.

He surveys my rashes, then says these are classic dermatomyositis rashes. It’s a relief for someone to immediately recognize what I have.

All that said, he agrees with my rheumatologist that I most likely have amyopathic dermatomyositis. He thinks my prognosis is actually quite good and likes my current treatment plan. He nonetheless orders an electromyography (EMG) test to confirm my muscles are in good health and additional imaging to make certain I do not have cancer (10 percent of dermatomyositis patients have cancer).

My girlfriend asks him if my muscles could get worse over time, if my immune system could further attack itself, if this is only the beginning of the end. She wants answers, to know I’ll be around to love her as long as she is to love me.

He cannot promise that. Neither can I. But for now, apart from the itchy, painful rashes covering my chest and arms, I still have my health.

The spirituality and sensitivity of broken skin

Posted on Posted in autoimmunity, dermatomyositis, existentialism, symptomsTagged , , , , , , , , ,

I look at the rashes covering my skin. I wonder if people notice, if the woman looking at me at the gym thinks I’m cute or just some monster.

Is God punishing me? Mocking me? Testing my faith? Has the devil come to collect the bill for the body I sold to keep my soul? Has Anubis weighed my heart against a feather and sentenced me to a watery, crocodilian hell?

Am I an evolutionary accident, some creature that should never have survived infancy, some being that should not be? Of the 20,000 genes in my body, should a single mutation change render me less than human?

Most people ask if I’m sunburned. I try to be polite, but how do I explain autoimmunity to the grandmother at the dermatology clinic, to the child at the store?

Before my first visit to the dermatologist two months ago, the rashes itched and burned so horribly I could not sleep—even with two antihistamines and melatonin. I could not sit in my own home with the fan on because the moving air scratched and irritated my skin. I hid under blankets to relieve the pain.

I’ve never been more thankful for prednisone.

The Hebrew Bible refers to skin diseases as tsara’at—meaning to be thrown down or humiliated. Those afflicted with these conditions were considered ritually impure; presumably, their disease was God punishing them for behaving immoral.

The Bible is not alone in its discussions of skin diseases nor are the Jews unique in their treatment of persons with them. As Philip D Shenefelt and Debrah A Shenefelt point out, across cultures, humans feel a spiritual connection with our largest organ, perhaps because it is the part of us most visible, and “persons with visible skin disorders have often been stigmatized or even treated as outcasts.”

Though we understand more than ever about skin diseases, though modern persons are not ostracized or forced to shout “unclean” as they walk down the street, I often still feel judged—even if the only one judging is the person looking back at me in the mirror.

Since being treated with corticosteroids, my symptoms have improved. My face is mostly clear, save for my Rudolph nose. The itching and burning is a fraction of what it was. I sleep better. I walk taller.

And hopefully, in time, my doctors and I will find a treatment to make my skin look new. In time, I will again feel human.

What is dermatomyositis?

Posted on Posted in autoimmunity, dermatomyositisTagged , , , , ,

My dermatologist called this week with my skin biopsy and blood test results.

Microscopes revealed my purplish rashes are thickening my skin in places, wasting it in others. Inflammatory cells meant for fighting infections have clustered around my blood vessels.

My blood shows elevated levels of creatine kinase and aldolase, the former an enzyme that breaks down the creatine commonly used by athletes and bodybuilders, the latter an enzyme that helps convert glucose into energy; these enzymes presence in my blood reveal I have muscle damage.

I have dermatomyositis.

Dermatomyositis is an inflammatory disorder in which the immune system mistakes the body’s muscle and skin cells for invaders and attacks them.

No autoimmune disease diagnosis is good. But the more common ones—lupus, psoriasis, rheumatoid arthritis—have modern treatments, including advanced immunosuppressive drugs. Over 90 percent of those afflicted with such diseases in the United States live a full life.

Dermatomyositis affects less than five in 100,000 people. Odds are my dermatologist has seen only a handful of cases in his lifetime (even in a city of five million). By contrast, over three million Americans have psoriasis. Lupus is about half as common as psoriasis, affecting 20 to 70 in 100,000.

To compare these autoimmune disorders with the more familiar, as many as 35 million Americans every year get the flu; 38.4 percent of Americans have or will have cancer.

An estimated 16,000 people in the United States have dermatomyositis. Considering the world’s third largest population is spread out over the world’s fourth largest country, the chances you ever meet one of them is very small.

None of these figures are to downplay the symptoms and suffering of other autoimmune, infectious disease, or cancer patients. These merely illustrate the rarity. If lupus is a medical-school disease, then dermatomyositis is that annoying challenge question some irritating MD-PhD-MPH snuck onto his medical student’s exams (interesting med-school fact: to the untrained eye, skin biopsies from dermatomyositis and lupus look very similar under a microscope).

Dermatomyositis is an inflammatory disorder in which the immune system mistakes the body’s muscle and skin cells for invaders and attacks them.

Major symptoms of dermatomyositis

  • Itchy, painful, bleeding purplish-reddish rashes occurring along the shoulder line like a shawl or in a V-shaped pattern above the breasts
  • Gottron’s papules, which are scaly, red rashes on the knuckles, elbows, and knees
  • Muscle weakness
dermatomyositis muscle biopsy under a microscope
In myositis patients, immune cells attack the body’s muscle cells, causing muscle damage and weakness. Here, the immune cells are purple, the muscle cells pink.

Other symptoms of dermatomyositis

  • Rashes around the eyes and on the face made worse by exposure to sunlight
  • Swollen, sometimes painful joints
  • Difficulty breathing from weakening lung muscles or interstitial lung disease
  • Difficulty swallowing
  • Calcium deposits

By modern standards, treatments for dermatomyositis are primitive. Every single drug used to combat any form of myositis was developed and used for something else like treating cancer or malaria. All of these have serious, even life-altering or life-threatening side effects. Corticosteroids are the first-line treatment, but they are not without serious risks; long-term users can develop additional muscle weakness, peptic ulcers, steroid dementia, osteoporosis, or Cushing’s syndrome.

Of course, doing nothing is not an option. Without treatment, dermatomyositis kills you.

So where does that leave me? Where does it leave others battling some form of myositis?

I don’t yet know.

Exercise and physical therapy will be very important and may one day save my lungs or my life. Stem-cell therapy may eventually work. New wonder drugs and therapies are being invented all the time. New uses for current drugs are always being explored. Meanwhile, there’s prednisone. And I’m not giving up on myself, on my disease, or on the marvels of modern medicine.

When knowing something is worse than knowing nothing

Posted on Posted in autoimmunity, existentialismTagged , , , , , , ,

Antinuclear antibodies. Autoimmune. I thought they were terms from contrived Hollywood procedurals to make the characters sound smart, words worth dismissing alongside the rest of the medical-school jargon I overhear in hospitals or read in news articles posted on the wall at the internist’s office.

Now, in some poststructural mockery of my own life, of my own beliefs, those words play hegemon over my mind like the Bratva over Moscow. Language has become reality. Who I am, who I was is lost.

Antinuclear antibodies. Autoimmune. I thought they were terms from contrived Hollywood procedurals to make the characters sound smart. Now, those words have become my reality.

For almost a decade, I have bowed to no god in heaven or earth, sworn allegiance to no flag but my own, obeyed no master but myself. I now supplicate to some being I cannot hear, I cannot see, wondering what a handful of numbers mean.

My last blood tests showed my antinuclear antibodies exceed thirty times the normal range. An indirect fluorescent antibody test returned a speckled pattern. My rheumatoid factor—another antibody test—is elevated.

My breaths are shallow. My chest is tight. My arms, legs, and chest are covered in rashes. Sunlight is either the cure or its burning me from the outside in, and I, like the biblical Job, cry “Violence!” to a god I do not believe in; I hear no answer—not from Jehovah, not from my doctors.

My internist suspects lupus or some other mixed connective tissue disease. My dermatologist believes I have dermatomyositis. Both say I need more tests.

Antibodies are proteins produced by the body in response to foreign substances—for example, viruses, bacteria, toxins. Antinuclear antibodies (ANAs) are produced when the body fails to adequately distinguish between what cells do and do not belong. Though healthy bodies can and do produce ANAs, more often, high concentrations of ANAs indicate an infection, most often, an autoimmune disorder.

I now wait with just enough information to make me anxious, paranoid, afraid, hopeless, depressed, but not enough knowledge to move through Kübler-Ross’s remaining stages of grief.

I spend too much time online reading about these diseases, wondering why I have them and from where they come. I am a sinner in the hands of this enigmatic twenty-first-century god, this omniscient being we call the internet, this entity with all the answers. I search website after website, looking at prognoses, forecasting my future. I see no answers.

My chest x-rays are negative for any lung disease. My electrocardiogram (ECG/EKG, depending on how much Greek you know) was completely normal. I try to focus on these positives, but I wonder if I am just bargaining. Grief stage two.

I speak with my girlfriend, with my parents, with close friends, with my therapist. I let some of my coworkers in on my news—after all, they need to know why speaking has become tough, why some days are more exhausting than others, why I keep leaving for different doctors. All are encouraging. They assure me modern medicine always has a cure (or at least a treatment).

But does it?

I try to remain positive. But at what point does optimism become denial?