Living with Fibromyalgia: A Glimpse into the Daily Battle

Sue Spence
Apr 22
4 min read

Updated: Apr 23

Fibromyalgia is a chronic, debilitating illness that continues to baffle the medical community. Its exact cause remains unknown, there is no definitive test for diagnosis, and it’s only after ruling out all other possible illnesses and diseases that a fibromyalgia diagnosis is considered.

Symptoms vary widely from person to person, and the journey to diagnosis is often long and frustrating. I’m sharing my personal experience here — not as a medical guideline, but as a window into what it’s like living with fibromyalgia. These are just some of the multitudes of symptoms that make up fibromyalgia.

Pain

Pain for no reason is probably the first indication of fibromyalgia. This pain can be widespread or localized — for example, in the neck, back, shoulders, muscles, or joints. Its intensity fluctuates throughout the day and is often worse at night. Since fibromyalgia has no cure, this pain tends to persist, never truly going away.

The type of pain varies — from sharp and severe to diffuse or tingling. Muscle spasms and delayed onset muscle soreness are also common.

Personally, I experience pain throughout my entire body. On a good day, my arms, legs, back, shoulders, and neck are just sore to the touch. On a bad day, I have severe pain, especially in my hips and gluteal muscles, which makes sleeping a challenge. The delayed soreness makes it hard to judge how much I can push myself — I might feel okay in the moment but suffer intense pain the following day. It’s a constant balancing act. (Read my article on how to interpret pain.)

Hands and Feet

Tingling or cold sensations in the hands and feet can be symptoms of fibromyalgia. While I don’t experience coldness, I do struggle with carpal tunnel issues from years of typing. Most mornings, the soles of my feet throb and tingle — it takes about 15 to 20 minutes for the pain to settle after I get out of bed.

Sensory

Heightened sensitivity to touch and unexplained pins and needles are also common. I often get pins and needles in my feet, even without restricting blood flow — which would normally explain that sensation.

My skin becomes overly sensitive when my muscles are sore. For example, if my arm muscles are sore and someone lightly runs their fingers down my arm, it actually hurts — a tingling pain that I have to rub away (which in turn hurts the muscles). It’s not pleasant. Communicating clearly with loved ones about these sensations is key to helping them understand your daily challenges.

Gastrointestinal Disturbances

GI symptoms such as constipation, bloating, excessive gas, and nausea can accompany fibromyalgia when no other cause is found.

I personally deal with constipation and bloating, though thankfully not nausea. I try to manage it with a high-fibre diet — and a good dose of patience and humour! (You can also read my article on ergonomics for more tips.)

Fatigue

Fatigue with fibromyalgia is more than just tiredness. It’s a deep, all-encompassing exhaustion, sometimes accompanied by a feeling of malaise — and there’s no clear reason for it. Even basic tasks like cooking a meal, doing laundry, or driving can be exhausting.

I’m incredibly grateful to my husband, who can read the signs in my face and knows when I’m not coping. Unfortunately, fibromyalgia is often misunderstood — some people think it’s “made up” or that we’re just being lazy. They don’t see the invisible struggle we live through each day.

Sleep

Sleep problems are a hallmark of fibromyalgia. Pain and discomfort can make falling asleep difficult, and I often wake up during the night to drink water, go to the bathroom, and try to settle back down.

Cognitive

Fibromyalgia can affect cognitive function — causing issues with concentration and forgetfulness. Since I already struggle with these symptoms due to depression, this wasn’t immediately obvious for me. But the “fibro fog” is very real.

Mood

Mood swings, anxiety, and nervousness are also symptoms of fibromyalgia. When I was first diagnosed, these were attributed to anxiety, while further tests were being done.

I’ve been on a long road to recovery from severe depressive disorder, so I know what it’s like to feel your emotions shifting uncontrollably. On bad pain days, I become withdrawn and quiet — a far cry from my usual bubbly, laughing self.

Headaches and Brain Fog

Chronic headaches and brain fog — that feeling of mental cloudiness — are common. I already suffered from migraines and was on medication to manage both migraines and depression, so these symptoms were somewhat masked for me at the time of diagnosis.

Anxiety and/or Depression

Given the impact fibromyalgia has on every aspect of life, it’s no surprise that it often goes hand in hand with anxiety and depression. The ongoing pain, fatigue, and isolation can take a significant toll on mental health.

Fibromyalgia is often called a “made-up illness” — and in a way, it is made up — made up of many symptoms that only make sense when viewed together. It requires a medical diagnosis, and this article is not meant to diagnose anyone, but to offer a glimpse into life with fibromyalgia from someone who lives with it every day.

If you're on this journey too — you're not alone.

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