Background/Purpose: In 2004, we moved to a new home with 2 small children, when I started experiencing terrible joint pain. For 2 years I was dismissed or tested without a diagnosis, and prescribed steroids, often methylprednisolone for the joint pain. The pain continued and it wasn’t until my white count was very low that a doctor ordered a PET scan and bone marrow biopsy. Granulomas were present everywhere. After a lymph node biopsy sarcoidosis was diagnosed. This was not a typical presentation.  I had arthritic flare ups in my joints and severe neuropathy. DMARDs and biologics finally quieted most of my symptoms for almost 2 years which led to remission without medication. Future surgeries caused arthritic flareups requiring me back on medication. During all of this, a committed practice of daily walking sustained me both physically and emotionally. 

Intervention: My joint pain was chronic, and my husband was prepared to move to a house with fewer stairs. I refused to be controlled by my joint pain. Each day I would push myself to walk down two flights of stairs to walk 3 miles on the treadmill. I was determined; walking through the pain every day was a practice, a therapy for me physically and emotionally.  

For several years I was in remission, and symptoms were relatively manageable. A bone density test at age 40 showed I had osteopenia, presumably resulting from the steroids in my 30s.  Now at age 52, I have osteoporosis.

In 2018 I had L4-L5 discectomy which awoke my dormant autoimmune related arthritis. My rheumatologist started me on DMARDs and biologics weekly, which I am still taking. The medication managed my arthritic flares so that I was able to return to walking. Once again, my practice of walking and core work helped me strengthen my back.  I was committed to protecting my health.

In 2021, a new challenge: severe left wrist pain affected my daily activities. MRI showed a tendon tear and severe OA in my wrist, requiring 2 surgeries. As I was healing, severe back pain affected my sleep.  MRI showed arthritis, stenosis, and severe disc degeneration resulting in a new L4-L5 spinal fusion surgery.  The surgery caused another arthritic flare up.

Maintenance: Once my back started healing, I once again returned to my practice of walking.

My MDs encouraged strength training to help with the OA. I was committed to building my muscles to support my bones and to do the necessary work to keep myself strong and out of the operating room. Walking daily and strength training is the essential combination which helps me manage my arthritis.

Quality of Life: It’s been 20 years since my diagnosis of sarcoidosis and OA. With perseverance and persistence, I am happy to report I live in the same house with the 2 flights of stairs, and I use the same old treadmill.

In 2023, I was honored to be asked to serve as a Community Outreach Leader for the Foundation for Sarcoid Research (FSR) representing Hospital for Special Surgery- an opportunity to share my story to help others with sarcoidosis.  I often said it was easier to understand my pain when you saw me in a cast. This can be an invisible disease. Explaining this journey to someone who never experienced it is challenging.  My commitment to walking and strength training has allowed me to persevere enabling me to  advocate and raise awareness for this community.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/walking-away-from-arthritis-pain-exercise-helped-me-manage-sarcoidosis-and-osteoarthritis-physically-and-emotionally/