Remission Doesn’t Always Mean the End of Symptoms

I know playing “what if” is a useless exercise when it comes to sarcoidosis. But during a four-day stint without cellphone coverage or internet access, I found myself doing it anyway. 

This disease has many scary aspects, such as cardiac involvement, which I wrote about earlier this month. And then there are the non-life-threatening and pesky issues that Just. Won’t. Go. Away.  

While I was recently snowed in, I pondered which issue I would bid farewell to if I had a choice of just one. This was not exactly a thrilling way to spend my time, I know. But given that medical interventions have yet to bring relief, dreaming is all I can do. 

My health has been a tangled mess since I was diagnosed with Lyme disease in 2001, and then sarcoidosis a year later. I had the foolish notion that remission would solve my problems.

But sarcoidosis comes and goes as it pleases. Whether it’s active or not, many symptoms stick around. In my imaginary game of “what if,” I narrowed down my banishment choices to three. Following were the contenders:

The Sandman

Exhaustion is my nemesis. My sandman isn’t the folklore type that sprinkles magical dust into children’s eyes at night to send them to dreamland. Nope. He’s a DC Comics, Golden Age guy carrying a gas gun that can incapacitate without warning, day or night. 

Plenty of us have fallen victim. Fatigue was the most commonly reported symptom (90%) by Danish, German, and Dutch respondents in a 2019 survey.  

Of my complications, it’s the most misunderstood by others. They can’t see it, nor do they comprehend how debilitating it can be. Sleep and caffeine won’t make it move along. I feel like a zombie in a surreal state, trudging along with heavy limbs and muddled thoughts.

That brings me to the next foe:

Strange(r) things unfold

One of the most baffling (to physicians) and unnerving (to me) problems has been cognitive dysfunction. It started as occasional mental blips of forgetfulness and difficulty concentrating. 

It crept in several years after other issues. But it’s now something I must work around regularly, as I previously mentioned. 

It’s also fairly common within our ranks. One-third of the general sarcoidosis population reported cognitive deficits, and more than half of those with neurosarcoidosis did. Those findings are from the study “Everyday cognitive failure in patients suffering from neurosarcoidosis,” published in the journal Sarcoidosis Vasculitis and Diffuse Lung Diseases in 2019. 

On a scale of one to 10?

My final consideration was pain, which affects most of us, despite our efforts to relieve it, as a 2017 survey noted. 

Pain is also the most persistent of my symptoms, having refused to give me a single day’s break in more than a decade now.  

After considering all of this, and following much flip-flopping on my part, my game winner was: pain. 

Two things surprised me after I reached that decision. The first was that it was so hard to decide. My aches eventually edged out the other issues, simply because they never leave. 

The second revelation was that it didn’t feel like a waste of time. Sarcoidosis comes at us from many angles. Narrowing down the secondary issue that affects me most feels more fruitful than running around trying to fix everything.

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

• Pet-saving partnership: Two animal shelters in different U.S. states are partnering for a year to rescue animals, Delaware’s Cape Gazette reports. Brandywine Valley SPCA, which has shelters in Delaware and Pennsylvania, is helping Tangipahoa Parish Animal Services in Louisiana increase its lifesaving rate from 20% to 90%. Brandywine Valley is sending staffers to help, and flying animals to its own locations to ease overcrowding. 
• Gaga for Oreos: Limited-edition Lady Gaga Oreos have arrived in stores. The golden Oreos feature bright green creme between two pink wafers with designs inspired by Gaga’s “Chromatica” album. You can also create your own custom Oreos and gifts using OREOiD.  

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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.