Taking Care of MEE

Hi Byte Wellness Fam!

How are you feeling?

I feel like I’m in the process of recharging. Just in time for Spring :). Conversation around our discussion question and our recent #PhyteWellWorkshop have something to do with why I feel that way. Keep reading to see why.

Discussion Questions:

When in life did you first notice your brain-body connection? How did it show up?

If you missed last week’s #PhyteWellWednesday Workshop, check out the recording below. If you’re not getting text invites to the workshops, make sure you get on the list! Send TEXT to 1(224)302-6224 to join the text thread and get newsletter invites. FYI here’s a link to the shared decision-making tool we demo in the workshop: https://www.upmc.com/health-library/article?hwid=share&locale=en-us

This week, we wrapped up the last few weeks of discussion about how to advocate for ourselves in healthcare settings. Being strong self-advocates means tapping into our brain-body connection and being able to articulate it clearly to others.

For some period of time, those of us suffering with chronic pain or psychosomatic symptoms or are likely to be the only (or at least the chief) advocates of our wellness. That’s not unexpected. We’re the only ones who know what symptoms we’re truly feeling and how severe they are.

We’re the only ones who know how much these symptoms are different from our normal baseline. It follows that we’re also the best people to communicate those facts to healthcare providers.

The process of getting diagnosed with fibromyalgia (the chronic syndrome we talked about last week) is a perfect example of why we need to be convinced of the truth of what we’re feeling.

What Is Fibromyalgia?

People think of fibromyalgia as a chronic pain condition where people feel pain in multiple spots over their bodies. But, it’s more than that.

People with fibromyalgia can feel pain and discomfort in multiple organ systems, not just muscles and joints.

Folks can feel a range of symptoms including constant pain and tenderness (to the touch) in their abdomen, bloating, fatigue, and even brain fog.

Before getting a diagnosis of fibromyalgia, people dealing with this chronic syndrome often suffer through the humiliation of being told that they’re making it all up.

Fibromyalgia is notoriously hard to diagnose because it’s a brain-body condition (called “psychosomatic” in medical terms). That means it has no clear physical cause.

Most fibromyalgia patients I’ve talked with say the only thing worse than living with the chronic pain of fibromyalgia is living with unnamed chronic symptoms in the pre-diagnosis period.

I mean…just imagine! Imagine talking with a doctor about your symptoms, hoping for a solution, and being told that you’re being “hysterical”, or “unreasonable”; that you simply have a “low tolerance for pain” or you’re making too much out of a “normal bodily sensation”.

Many of us don’t have to push the levers of our imagination too hard to picture this scenario; we’ve been through some version of this before.

Black folks and women are notoriously under-treated for pain from any number of causes. That’s why we absolutely must be in touch with our bodies. We have to know what we feel like at our baseline, and we have to be able to articulate what has changed.

Horrible new pain or sleep disruption should sound the alarm that something is going wrong in our lives- possibly in our minds.

Getting to the Truth

So how is fibromyalgia diagnosed? With psychosomatic conditions, doctors run all the tests (labs, imaging, etc) to rule out all the scariest causes of a person’s symptoms. Then, we run the next battery of tests looking for less serious causes of pain.

After the tests are run, one of two things can happen:

1) All the physical results come back relatively “normal”

The x-rays don’t show arthritis or fractures to explain bone pain. MRIs don’t show injured muscles to explain soreness. CT scans don’t show brain changes to explain headaches. Endoscopies don’t show damage to the stomach or intestines to explain belly pain.

2) There are some clearly abnormal results, but they don’t explain the full array of symptoms.

The x-rays show wear-and-tear arthritis (osteoarthritis), but that doesn’t explain your brain fog. Or the endoscopy shows an irritated stomach lining (gastritis), but that doesn’t explain your muscle pain or constant fatigue.

After a bodily cause of pain has been ruled out, we look to the brain (our thoughts and feelings) for a cause of the chronic pain of fibromyalgia.

My hope, for all of us is for peace, joy and a quick explanation of (and solution for) whatever ails us. No matter how challenging the healthcare environment is, we always have considerable power in making our voices heard. Remember that.

The Take Care of MEE framework can help us get the most out of our power.