Living with Fibromyalgia

Aug 30, 2018 | 30 Years

Dan was 34 when he was finally diagnosed with Fibromyalgia (also known as Fibromyalgia Syndrome or FMS). Until then he’d never even heard of the word, let alone ascribed it to the symptoms he was feeling.

Sure, he didn’t have the energy he used to but no one’s getting any younger, right? So, he went to bed earlier, woke up later but it was still an effort to drag himself out of bed in the morning. However long he slept, he still didn’t feel refreshed.

In the beginning, Dan thought the aches and pains followed a hard day in the garden until he realised he hadn’t had enough energy to do any heavy lifting in the garden for quite some time. The spirit was willing but the stiffness in his joints and the headaches left him feeling wrung out and sometimes unable to even go outside, let alone do any gardening.

When the aches and pains became chronic, Dan decided it was time to take himself to the doctors. And so began the months of tests and the many times when Dan felt no one was taking him seriously. He said because he wasn’t presenting with broken bones to explain the pain he was in, there was a tendency by some to treat him as though he was attention seeking and should just “suck it up”.

That’s the problem with pain that no one can see, Dan said, and from his experience, it’s why people with Fibromyalgia put off going to the doctor. The tests can rule other illness out but can’t rule Fibromyalgia in. But it’s a starting point and getting a diagnosis is at least a place to begin.

Fibromyalgia may be diagnosed by:

  • Widespread pain for 3 months or longer;
  • Abnormal tenderness at particular points around the neck, shoulder, chest, hip, knee and elbow.

According to Emerge Australia, Fibromyalgia (FM) or Fibromyalgia Syndrome (FMS), is a condition with symptoms that include widespread, pervasive and chronic pain and tenderness in the body, and muscle stiffness, often accompanied by fatigue (hence a relationship with ME/CFS), cognitive disturbance/difficulties and emotional distress. Like ME/CFS, symptoms of FM can vary from mild to severe.

Living well with Fibromyalgia

There is no known cure for Fibromyalgia, but there are ways to treat it to help you live well. This includes a combination of education, medication, exercise, relaxation, good nutrition, massage, being kind to yourself and having good support.

Dan said all those approaches work for him some of the time and none of them work all of the time. He said it’s a bit like getting a baby to sleep. You can feed, burp, change, rock, sing, play music, go for a drive in the car or a combination of some or all. Sometimes they work and sometimes they don’t.

On the days that Dan can’t get out of bed, he doesn’t. He stays there and lets the world turn without him. He meditates regularly which helps him find that peaceful place which at times is so elusive.

The Spoon Theory

The Spoon Theory, developed by Christine Miserandino who has Lupus, is a way of explaining how people with a chronic illness ration their energy at the start of the day. Each spoon represents a task associated with expending energy. Getting up might be one spoon, showering another, getting dressed one more. And so on. There are only 12 spoons and maybe, on a careful day, there might be one spoon left to make dinner, maybe not.

Dan says Fibromyalgia has changed him to a much calmer, cooler person. Every cloud, right?

Creating a healing environment

Quest for Life’s holistic recovery-oriented programs have the potential to change people’s lives in profoundly positive ways. Long-term research on the impact of Quest programs finds that over 90% of participants improve their quality of life and feel more in control of, and able to make changes to, their life.

Learn more about ways to create a healing environment through our Taking Control of Chronic Pain 5-day residential program.   

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