Tag: muscle weakness

Breathing difficulties: the demon on my chest

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

Breathing difficulties have made the last two weeks hell. The one symptom of dermatomyositis that has largely been dormant for over a year has returned—weak pectoral and diaphragm muscles. My breaths are once again shallow. Working out is a chore. I wake up in the middle of night feeling like my body is not getting enough air, like I’m panicking, like a demon is sitting on my chest.

John Henry Fuseli’s The Nightmare illustrates what breathing difficulties while lying flat feel like for me.

Has stress inflamed my condition? Have my medications stopped working? Have I simply taken them too irregularly and messed up my progress?

Two business trips, a late-night birthday bash, and attending to doctor appointments have meant irregular schedules and interrupted circadian rhythms. I compensate for sleepiness with caffeine. Too much caffeine keeps me awake, creating a vicious sleep cycle. I struggle to motivate myself to workout. Both exacerbate my symptoms.

Just doing a mild abdominal workout took all my strength tonight. Typing out this note has zapped what little energy I have left.

Skeletal muscle mass—still getting stronger, despite dermatomyositis

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

Despite having dermatomyositis—my condition in which my immune system is attacking my skin and muscles—I’m still getting stronger. My skeletal muscle mass and body fat mass is better than I expected.

body mass index body fat mass skeletal muscle mass dermatomyositis
Despite battling dermatomyositis, my body fat mass is right where it should be and my skeletal muscle mass is above average. I’m even stronger than I was a couple months ago.

Saturday, my girlfriend and I went to the Nutrishop in Tempe to stock up on workout supplements and enter ourselves into a competition. The $1000 shopping spree goes to he or she who loses the most weight and grows their skeletal muscle.

I don’t need to lose weight, but I am trying to gain muscle. I already work out five days a week, so why not enter? Even if I don’t win, it costs me nothing. Plus, these creatine and stimulant supplements essential for fighting my disease are expensive.

Much to my surprise, my numbers came back very good. My body fat mass is right where it should be and my skeletal muscle mass is above average. In short, I’m stronger and healthier than I sometimes feel.

Gym Results: Evidence of Dermatomyositis

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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.

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.