By Linda Z.

The journey for many of us with myositis can be complicated by overlapping diagnoses such as Sjogren’s, lupus, or fibromyalgia to name but a few. For me, this was polymyositis and interstitial lung disease (ILD). A dual diagnosis often means juggling varying demands in medications, treatments, physicians, and prognoses.

My dual diagnosis came in October of 2023, but this wasn’t the first time I had been seriously ill in my life. Since my 20s, I have periodically suffered bouts of fatigue, weakness, and pain. At one point my PCP thought I might have multiple sclerosis (MS). Another time I had to depend on arm, knee, and back braces to enable me to walk and function. While these episodes were debilitating, eventually they resolved.

In July of 2023, however, I was doing something that no one with an autoimmune disease should do: I was working outdoors when the temperature was over 100-degrees Fahrenheit. I am an avid gardener and was completing work on an arbor my husband and I had just erected. We did all the labor ourselves and now I was putting on the finishing touches of paint. Despite the discomfort of working in the hot sun, I just wanted to finish this project and I did—but my life would never be the same.

The next day, I was exhausted. The fatigue that had plagued me on and off in the past got progressively worse over the next few weeks. I began to fall asleep for a few seconds without warning even at work. I knew I had to take some time off and seek medical care.

I began working with a new PCP, and I don’t think it is an exaggeration to say he helped save my life. The most important thing he did was believe me. Other than pneumonia that wouldn’t respond to antibiotics or antifungal medications, I appeared relatively healthy. Even with the pneumonia, my oxygen saturation was 96, which is within the normal range. When routine testing showed nothing worse than vitamin D deficiency, my PCP referred me to a rheumatologist and pulmonologist. Now I had a team trying to solve the puzzle.

My rheumatologist ordered several blood tests, the results of which confirmed his diagnosis of polymyositis (PM), a disease of which I had never heard. My pulmonologist performed a bronchoscopy among other tests and diagnosed me with interstitial lung disease (ILD), another disease of which I had never heard.

What is ILD?

“Interstitial” refers to the spaces around the air sacs deep within the lungs. Oxygen in the air we breathe moves across the air sacs into the blood vessels where it is transported to the bloodstream and the rest of our body. If this interstitial space becomes inflamed it can become scarred and fibrous, making it difficult for oxygen to get into the blood.

If ILD is left untreated, the inflammation and scarring progresses and is irreversible. This can lead to a permanent restriction in the body’s ability to extract sufficient oxygen from the air we breathe. For those of us with ILD, the goal is to dramatically slow the progression of the disease, effectively halting the inflammation in the lungs caused by whatever form of myositis we have.

A diagnosis of ILD can be frightening when we read descriptions that say it is a life-limiting illness with no cure. However, there are many people within the TMA community who are living and thriving with myositis and ILD. One of those who has shared her journey with PM and ILD is TMA Board Member Holly Jones. Ms. Jones has reached a milestone this year: she has been living (and thriving) with PM and ILD for twenty-one years and recently achieved her dream of becoming a published author! Her story gives me hope and helps me understand that ILD is a complication but not a barrier to wellness, happiness, and peace.

Because myositis and ILD can differ in how people experience them, I have started a separate support arena within the TMA Nationwide Myositis Support Group Meeting for those coping with these co-occurring conditions. This support group meets once a month on the first Saturday, and I envision this breakout session as a place where we can discuss issues that might not be relevant to those who don’t have ILD. I invite anyone who has ILD or is a care partner for someone with ILD to attend this meeting and join our breakout session starting in June.

Thank you for letting me share my diagnosis story, and I look forward to seeing you at our next meeting!

Linda is a psychotherapist living in Southern California. She is currently taking a break from patient care to focus on recovery.

2 comments on “Polymyositis and interstitial lung disease: My dual diagnosis story”

  1. 1
    Molly Campau on May 28, 2024

    I also was diagnosed with PM and ILD just a couple of months before you, in May 2023. I am 44 and terrified of a short lifespan. I am trying all things recommended by my doctors, plus proactively trying supplemental approaches. I had no idea about Ms Jones’ 20+ years with both diagnoses so I appreciate that message of hope!

  2. 2
    Alicia Lowther on June 11, 2024

    Very informative, Linda. How wonderful that your Dr listened and made the appropriate referrals! Best of luck to you and your TMA Myositis Support Group.

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