Boiling frog syndrome: Symptoms of sarcoidosis turn up the heat

“When did the pain start?”

That’s a fairly straightforward question with an uncomplicated answer for most people:

• “I fell last Thursday and hurt my knee.”
• “I was helping a friend move over the weekend and tweaked my back.”
• “I ate something funky last night, and my stomach’s been hurting ever since.”

This simple exchange helps determine what’s causing the pain (broken bone, pulled muscle, food poisoning) and what can be done to alleviate it. But it’s not so simple with sarcoidosis and its many comorbidities.

Recommended Reading

September 8, 2023 Columns by 🦋 Kerry Wong

How acute understanding of chronic pain can improve lives

Sarcoidosis can affect any organ or system in the body, often more than one. For me, that includes my lungs, causing wheezing and shortness of breath; my skin, presenting as itchy rashes and painful skin reactions; my muscles and joints, generating pain, swelling, and weakness; and my nerves, leading to everything from pain and numbness to problems with blood pressure, digestion, and temperature regulation. It also creates systemic symptoms, including fatigue, weakness, dizziness, and more.

With so many systems affected (not to mention additional diagnoses of chronic migraine, fibromyalgia, Hashimoto’s thyroiditis, irritable bowel syndrome, and rheumatoid arthritis), I’m always experiencing symptoms. They may fluctuate, shift, or vary in location or severity, but they’re always there.

People with sarcoidosis learn to live with these symptoms as a constant, albeit an inconstant one. We get used to life with chronic pain and fatigue. We adapt to our new normal, with its struggles and limitations. It’s a necessary survival skill, but it does have its shortcomings.

Putting my finger on the pain

At a recent medical appointment, I told the physician assistant (PA) that I’ve been feeling a lot more pain lately.

“Where?” she asked.

“My left knee and right elbow … and right hip … and lower back … and neck … and traps (trapezius muscles, between the shoulders and the neck) … and both hands.” The more I thought about it, the more I realized how widespread and severe the pain had become.

“When did it start getting worse?”

That one’s not so easy to answer. A few days? Weeks? Months?

I feel like the proverbial frog in boiling water.

As the (rather morbid, especially for a vegetarian) story goes, a frog placed in boiling water will feel the heat and instinctively jump right out. However, if a frog is placed in lukewarm water and the temperature is increased gradually, it won’t notice the change and will end up boiled alive. While science has disproven its accuracy, this analogy has been used for just about everything, including climate change, business, and the psychology of human behavior.

With a slew of symptoms ever-present, sarcoidosis and other chronic illnesses can turn us into the second frog in the metaphor. Our symptoms may worsen by degrees, slowly, until the water is so hot we can’t take it.

That’s where I found myself leading up to that appointment. The PA did her due diligence, asking the relevant questions and ordering the requisite labs. She was, naturally, trying to find a correlation between when my pain increased and any lifestyle or medication changes.

The PA suggested that it might be related to my intravenous immunoglobulin (IVIG) infusion dosage, which was reduced a few months ago. Although IVIG is primarily used to treat my small fiber and autonomic neuropathies and my increased pain is mainly musculoskeletal, what I’ve learned is that basically everything can be related to basically anything. She suggested that I reach out to my neurologist, who oversees that treatment.

That’s a reasonable first thought, and it makes the most sense. Aligning a symptom change with a treatment change seems like an easy answer, and getting my neurologist to readjust my IVIG seems like an obvious solution.

But with a rare disease like sarcoidosis, nothing is easy or obvious.

That’s why it usually takes more than one appointment — even more than one specialist — to get real answers. There are plenty of other factors in play, too: The weather, my activity level (and inactivity level), 15 other medications and supplements, and countless other health conditions can affect my pain levels. And sometimes, sadly, there is no answer.

I hope it turns out to be as simple as the PA suggested, and I’ll reach out to my neurologist about the idea. But to be on the safe side, I’m also going to contact my rheumatologist, since autoimmune and musculoskeletal issues are her specialty. I’ve been seeing both of them for years, so they’re familiar with me and my complicated issues. Best of all, they communicate with each other, so we can work as a team to figure things out.

I’m hoping we can find a way to keep my pot from boiling over. In the meantime, to paraphrase Dory from “Finding Nemo,” I’ll just keep simmering.

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.