Living with Chronic Pain: Unthinkable but Many Americans Are

Published with Open Mic Rochester on Sept. 27, 2017. 

Note: This was the first article in a series on chronic pain.

Many of our greatest thinkers, doers and changers in America are suffering from unthinkable, debilitating pain and fatigue on a daily basis.

Estimates state one million Americans deal with chronic pain, according to the American Academy of Pain Medicine, and you may never know it. Celebrities like Lady Gaga coming out about their trials with fibromyalgia – a disorder with symptoms like chronic pain, chronic fatigue and memory issues – have brought chronic pain and Pain Awareness Month to light.

A local Rochester entrepreneur also working to shed light to these issues is Calvin Eaton, the Founder and CEO of 540WMain (540 West Main). He is an Ambassador for the U.S. Pain Foundation.

Eaton was diagnosed with fibromyalgia in 2010 after spending months dealing with chronic fatigue starting in fall 2009.

“It started off with the fatigue – being out of breath by just doing things like taking a shower,” he remembered. “Showers became a chore and a labor.

Around 5 million Americans over 18 are affected by fibromyalgia, according to National Institute of Arthritis and Musculoskeletal and Skin Diseases. It’s an exhausting disease that’s hard to describe, Eaton said, and often difficult to live with. Many things that are easy to most, like showering, running, spending a day in the garden or standing and talking at a work event for a few hours, can make someone with fibromyalgia feel like they’ve been through a boxing match – and lost.

It can be difficult to hold down many jobs because, “when you have bad days, they’re really bad,” Eaton said. There are times when he will be too tired to stand, and he has slept for 16 hours before from pure exhaustion.

When Eaton was diagnosed he was a teacher in Nashville, Tennessee. It became difficult to make fibromyalgia work with a traditional job like that. Two short years later he started his blog, The Gluten Free Chef Blog, when he was diagnosed with celiacs disease.

Things happened quickly from there. Eaton decided not to look at what would limit him, but how he could make it work while dealing with his constant pain and fatigue. He moved back to Rochester to have a better support system and published his first book, Living with Fibromyalgia a book of poems detailing his experiences.

He continued to grow as a blogger and a voice in the gluten-free community before publishing his cookbook, Cooking with Fibromyalgia, which is full of gluten free recipes and tricks in the kitchen that allow people to cook healthily without spending all day in the kitchen.

He founded 540WMain in 2016, a community learning academy that offers free and low cost classes related to holistic health and wellness. These classes range from cardio through hip hop to understanding veganism and resume and cover letter courses.

Not slowing down at all, on Oct. 9, 540WMain’s online academy will begin its first semester.

Eaton’s incredibly accomplished, all while also helping others understand chronic pain and fatigue. One thing he focuses on is the world of opiates and chronic pain. Many people associate frequent opiate users with addicts, but Eaton explained he and many others use opiates every day simply so they can live.

“I take pain medication to survive and exist with chronic pain,” Eaton said. “I think that conversation gets kind of mixed in with individuals who are addicted to chronic pain medication. It’s an issue changing policy at the national level.”

For example, Eaton said CVS pharmacies now have a seven day maximum for opiate prescription. While that may deter addicts, it makes life difficult for someone who needs opiates to deal with an at-times crippling disease. Additionally, fibromyalgia was just recently recognized as a disease you could get disability help with, and still it is difficult because it’s an “invisible disease,” Eaton said.

Despite this, Eaton chooses to focus only on the positive aspects when he can. There are always tough days, but he strives to maintain a decisive outlook.

“I think one of the things I had to come to accept is I’m not at a place where I’m looking for a cure necessarily, but just looking to see how I can manage my illness so I can thrive as a person with a chronic illness,” he said.

For others recognizing Pain Awareness Month in September, Eaton advised not counting different remedies out – he personally uses essential oils, does yoga and acupuncture in addition to taking medication. He also encouraged people to think creatively about how they can make the situation they’re in work best for them:

“I try to have the mindset that if I can’t do it, how can I do it in a way that makes sense for me living with chronic pain. That just takes a mindset shift.”

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