Life in Pain: Fibromyalgia and Me

Living with Chronic Pain.

Photo by Klara Kulikova on Unsplash

Diary of a Chronically Ill Neurodivergent Female: Week Nine

Every single day, I wake up with pain in my hands. It’s a constant, gnawing ache that never truly leaves. Around half the time, pain spreads through my neck and shoulders, making even simple movements feel heavy and difficult. And that’s on a good day. When a flare-up strikes, it’s a different story entirely. My entire body throbs—muscles screaming, joints aching, and even my skin becomes hypersensitive, as though a simple touch might set it ablaze.

Fibromyalgia is relentless. It doesn’t follow logic or reason. Some days, I push through with relative ease; others, I struggle to do the most basic tasks. The unpredictability is exhausting, both physically and mentally. Yet, I have learned ways to manage the pain, ways to keep going even when my body resists.

Understanding Fibromyalgia and Chronic Pain

Fibromyalgia is a complex and often misunderstood condition. Unlike an injury or illness with a clear cause, fibromyalgia doesn’t show up on scans or blood tests. Instead, it’s diagnosed through symptoms—widespread pain, fatigue, cognitive issues (often called ‘fibro fog’), and a host of other physical and neurological problems. Because of this, many people living with fibromyalgia experience medical gaslighting, where their pain is dismissed or attributed to anxiety, depression, or simply ‘overreacting.’

This lack of understanding can make living with chronic pain even more difficult. When doctors struggle to validate your pain, it becomes even harder to explain to family, friends, or employers. I have experienced the frustration of being told that I just need to “exercise more” or “reduce my stress,” as though that would magically cure me. The truth is, chronic pain doesn’t work that way. It requires careful management, self-awareness, and acceptance that some days will be harder than others.

Finding What Works

Living with chronic pain means constantly searching for relief. Over the years, I have discovered what works for me, and while it doesn’t erase the pain, it helps me cope.

1. Heat Therapy

My hot water bottle and heat pads are my best friends. Applying heat to sore muscles brings comfort, easing the stiffness and reducing the deep aches. On bad days, I wrap myself in warmth and let it soothe the worst of the discomfort. I also find warm baths help, especially with Epsom salts, which can relax the muscles and reduce tension.

2. Painkillers

While I try to manage pain naturally where I can, there are times when painkillers are essential. Used wisely, they help take the edge off, making daily life more bearable. It took time to find the right combination that worked for me, and I’ve had to advocate for myself with doctors to be taken seriously. Pain relief is not about seeking to eliminate discomfort entirely—it’s about making it manageable enough to function.

3. Meditation and Mindfulness

Pain doesn’t just attack the body; it seeps into the mind. Meditation helps me stay grounded. Focusing on my breath, practising guided visualisations, and simply allowing myself to sit with my feelings—these techniques help me manage the emotional toll of constant pain. When pain is severe, it’s easy to spiral into frustration and despair, but meditation gives me a tool to shift my focus away from the pain, even if just for a short time.

4. Lifestyle Adjustments

I have had to make significant lifestyle adjustments to accommodate my pain. This means prioritising rest, setting boundaries, and learning to say no to activities that will cause unnecessary suffering. It has also meant rethinking how I approach work and daily tasks. I use ergonomic tools, take frequent breaks, and adjust my schedule based on my pain levels. It’s a learning curve, but making these changes has helped me maintain a sense of control over my life.

Tips for Coping with Chronic Pain

If you live with chronic pain, you know that no single approach works for everyone. But here are some things that might help:

Pace Yourself – It’s tempting to push through on good days, but overexertion can lead to a painful crash. I’ve learned to listen to my body and rest when needed.

Gentle Movement – While strenuous exercise is often impossible, light stretching or short walks can ease stiffness and improve circulation. I’ve found yoga or simple stretching routines helpful when I’m able to do them.

Seek Support – Whether it’s from loved ones, online communities, or a healthcare professional, having support makes a huge difference. Chronic pain can feel isolating, but you don’t have to face it alone.

Prioritise Sleep – Sleep can be elusive when pain is present, but improving sleep hygiene—such as maintaining a regular bedtime and creating a comfortable environment—can make a difference.

Advocate for Yourself – Many people with chronic pain struggle to be taken seriously. I’ve learned to push for the care and support I need, whether from doctors, workplaces, or even friends and family.

The Emotional Toll of Chronic Pain

One of the hardest aspects of chronic pain is the emotional toll it takes. The constant discomfort, the unpredictability, the loss of control—it all contributes to feelings of frustration, sadness, and even grief for the life I once had. It’s difficult to watch others go about their lives with ease, doing things I can no longer do without consequences.

Pain affects relationships too. Friends may not understand why I cancel plans last minute. Family members may struggle to grasp the extent of my pain, especially since fibromyalgia is an invisible illness. The energy required to explain my condition can be draining, and at times, I find myself withdrawing rather than trying to justify my experience.

Mental health is just as important as physical health when living with chronic pain. I have learned to be kind to myself, to acknowledge my limitations without self-blame, and to seek joy in small moments. Whether it’s reading, watching a favourite show, or spending time with my child, these little joys keep me going.

Living, Not Just Surviving

Fibromyalgia forces me to adapt every single day. Some days are better than others, but I refuse to let pain define my existence. I focus on what I can do rather than what I can’t. I embrace the moments of relief, and I give myself grace on the harder days.

One of the biggest lessons I’ve learned is to let go of guilt. I no longer feel guilty for resting when I need to. I no longer berate myself for not being as productive as I once was. Instead, I celebrate the small victories—getting out of bed on a bad day, completing a work task despite the pain, finding laughter in the midst of discomfort.

Living with chronic pain is not easy, but I am still here. Still fighting. Still finding joy in the small things. And that, in itself, is a victory.