The Importance of Asking Questions About Sarcoidosis and Arthritis
I recently recorded my first episode as co-host of a podcast about arthritis — defining it, differentiating the various types, and discussing how it affects us. Our group of co-hosts included people living with rheumatoid arthritis (RA), Sjögren’s syndrome, non-radiographic axial spondyloarthritis, and sarcoidosis. I think we raised more questions than we answered, but I also think that’s kind of the point: to get the conversation started.
Much like sarcoidosis, arthritis is often misunderstood. What most people think of is osteoarthritis, the degenerative form that develops in a given joint from wear and tear over time. But there are actually over 100 different forms of arthritis, and they can affect anyone at any age. Inflammatory arthritis can cause pain and swelling in multiple joints. Like sarcoidosis, it can affect almost any organ or system in the body.
All of that overlap is what made my journey to diagnosis — and that of so many of us — such a long and complicated one.
Long road to diagnosis
My struggle to be diagnosed started in my early 30s, when I developed a variety of symptoms, including aches and pains in nearly every part of my body, weakness, dizziness, and fatigue, in addition to the headaches and gastrointestinal problems I’d already been living with for years. But these were all invisible symptoms, so doctors simply dismissed me as “just depressed.”
While all of that continued, I developed new symptoms: skin rashes and painful swollen joints. The doctors finally took me seriously, but they still couldn’t figure things out. They said I had “some kind of arthritis,” and that it was “probably autoimmune,” which might have explained the skin issues.
For the next four years, doctors focused on a series of autoimmune and autoinflammatory conditions as possible diagnoses, including lupus, psoriatic arthritis, rheumatoid arthritis, Still’s disease, and even undifferentiated connective tissue disease. They never even considered sarcoidosis as a possibility, because it is generally thought of as a pulmonary disease, not a rheumatic or multisystemic one.
Eventually, I had a chest X-ray and a skin biopsy, and after eight years of trying to figure out what was wrong, I was finally diagnosed with sarcoidosis. Still, there was so much my doctors didn’t know about the disease, so I had to do all I could to learn more about it on my own.
What’s interesting is that I seemed to have a textbook case of a form of sarcoidosis called Löfgren syndrome (LS), with bilateral hilar lymphadenopathy (inflamed lymph nodes in the lungs), erythema nodosum (painful red bumps under the skin), and arthritis. What’s even more interesting is that no doctor ever mentioned LS — not then nor in the seven years since. That may be a good thing, though, since LS is said to be a mild form that resolves on its own in six months to two years, and my sarcoidosis clearly has not.
That led me back to more questions. Even when we think we have the answers, the question remains how reliable, accurate, and up-to-date that information is. For example:
- In the U.S., a disease is considered rare if it affects fewer than 200,000 people. As I was preparing for Rare Disease Day on Feb. 28, I saw varying figures, depending on the source, ranging from 150,000 Americans with sarcoidosis to more than 200,000. That number determines whether sarcoidosis is even classified as a rare disease.
- Arthritis is not considered a primary symptom of sarcoidosis. I’ve read statistics noting that the percentage of sarcoidosis patients who have arthritis is as low as 15-30%. However, in the seven years that I’ve been involved with the sarcoidosis community, I haven’t met a single person who said they didn’t have arthritis.
In the time since my sarcoidosis diagnosis, my rheumatologist has added “a little RA” and “a little Sjögren’s” to what she calls my “own personal flavor of autoimmune soup.” That is probably the most accurate description I’ve ever heard, but it still leaves me with questions. For example, are these new developments, or were they present all along? How much have these “ingredients” contributed to, amplified, or even controlled one another?
Many of us have even more questions whenever we develop a new symptom. Where did that come from? Is it part of our sarcoidosis? Is it from one of the comorbidities we already know about? Is it from a new condition we didn’t even know we had? Is it a side effect from one of the many medications we’re taking to treat those conditions?
That’s why it’s so crucial to ask the important questions and keep the conversation going. By sharing our experiences through surveys and registries, we can help to ensure more accurate data. That can lead to greater clarity about our diseases, an easier path to diagnosis, and better treatments.
Through blogs and podcasts, and perhaps even more importantly, by connecting with others living with sarcoidosis and arthritis, we can learn that we are not alone. Arthritis Awareness Month is observed in May and offers myriad opportunities to learn and share. Listen to our podcast, join the chat on Twitter, and add your thoughts in the comments below.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.
Really resonated with this. Sarcoidosis started for me after a Parvo virus infection and initially affected my joints and muscles. Years of episodes of joint/ muscle pain were not investigated. Moved to skin - eczema/ allergies ? then to persistent cough and after 3 years, a diagnosis of pulmonary sarcoid. Then along came arthritis , only now after 12 years being linked to sarcoid. Massive sun sensitivity continues. I’ve developed good soup making skills! Cheers Kerry
🦋 Kerry Wong
I'm sorry you've had to go through so much, Susan, but glad you've developed a good spirit about it (and good soup skills 😉). Hoping you've also found some relief over all that time, too.