Fibromyalgia 101: Understanding a Complex Condition

Diary of a Chronically Ill Neurodivergent Female: Week Five

Photo by Yuris Alhumaydy on Unsplash

I found out just before the COVID-19 lockdown here in the UK that one of my conditions had a name—fibromyalgia (a chronic pain disorder). After spending years telling healthcare professionals that I was perpetually exhausted and in constant pain, where I was fobbed off that I was just depressed and stressed, I was finally referred to a rheumatologist. He confirmed the diagnosis but offered little else, merely suggesting a few books and websites before sending me on my way. I wasn’t referred on to any additional services or given any support, I felt completely on my own—left to chase information and insist that my GPs help me with pain relief.

My pain levels have been so severe at times that I often rely on crutches, and occasionally I use a wheelchair to get around.

On two separate occasions, the pain was so bad that I ended up in A&E.

Both times, staff seemed uncertain about how to help me; they merely offered me ibuprofen and sent me home. It was disheartening and made me realise that if I wanted to manage this condition effectively, I’d need to take matters into my own hands.

Through my own research, I learned that the cause of fibromyalgia involves a mix of genetic, biological, and environmental factors. Certain infections, injuries, or extended periods of stress can trigger the condition. Specialists also believe that imbalances in neurotransmitters like serotonin and noradrenaline cause the central nervous system to amplify pain signals. It was a relief to discover there’s a scientific explanation behind my experiences, even if I had to find this information by myself. However, I still wish my initial diagnosis had come with clearer guidance and proper referrals.

While receiving the official diagnosis felt overwhelming, it also brought me relief. It validated my experience and helped me realise I wasn’t imagining my symptoms. My journey has been difficult, but knowing that fibro is a recognised condition—rather than a figment of my imagination—gave me the drive to learn as much as I could about managing it.

Research increasingly suggests there may be a link between ADHD and fibromyalgia, particularly in women. Some studies indicate that women with ADHD are at higher risk for chronic pain conditions like fibromyalgia, potentially due to shared neurological pathways or heightened stress responses that amplify both cognitive and physical symptoms. While the exact relationship is still under investigation, these findings highlight the importance of comprehensive evaluations and tailored treatments for women who present with overlapping symptoms of ADHD and chronic pain. This is a finding from my own PhD research, watch this space.

What Fibromyalgia Feels Like

Living with fibromyalgia can feel like a rollercoaster ride, mainly because of the unpredictability of the symptoms. The hallmark sign is widespread, persistent pain. Some days, my body throbs as if I’ve caught the flu; I ache all over, and it feels like even my hair follicles hurt. On other days, sharp, shooting pains pierce my muscles and joints, causing me to gasp if I move too suddenly. There are days when the pain is so intense, I have to tell my 9-year-old daughter that she can’t hug me.

A second defining feature is profound fatigue. Despite sleeping for eight or nine hours, I often wake up feeling as though I haven’t slept at all. Tasks like showering or cooking breakfast can feel exhausting. I’ve spoken to many others with fibromyalgia, and we all share this sense of being perpetually worn out, as though we’re wading through treacle. There are debates in medical research about whether chronic fatigue syndrome and fibromyalgia are actually the same condition.

“Fibro fog” is another symptom that catches people off guard. It manifests as a foggy-headed feeling or confusion, making it tough to concentrate or remember simple things. I’ve found myself in the middle of conversations only to lose my train of thought entirely. Headaches, irritable bowel syndrome (IBS), and dizziness also appear frequently in people with fibro, adding extra layers to an already complicated condition. I get vestibular migraines, a lovely blend of vertigo mixed in with migraines.

Why It Affects Women More

A question I’ve often asked is, “Why does fibromyalgia target women more?” Studies suggest that as many as 80 to 90 percent of fibromyalgia diagnoses occur in women. One theory points to hormonal factors: fluctuations in oestrogen and progesterone could make women’s nervous systems more susceptible to pain signals. Another possibility is societal and cultural pressure.

Women are frequently expected to juggle multiple responsibilities—careers, childcare, household tasks—all while appearing calm and capable.

This continuous stress might exacerbate an already sensitive nervous system. I can relate: before my diagnosis, I tried to be a superwoman, taking on too much and ignoring my body’s plea for rest. Over time, the relentless burden may weaken our ability to cope with the pain and fatigue that fibromyalgia brings.

Seeking a Diagnosis

For years, I doubted my own experiences because the medical professionals I encountered downplayed my symptoms. I went through numerous GP appointments, blood tests, and scans that all came back “normal.” When your test results don’t reflect your day-to-day suffering, you start wondering if you’re making it all up.

Eventually, I met a rheumatologist who specialised in musculoskeletal conditions. He took the time to hear about my exhaustion and pain, and he recognised the possibility of fibromyalgia. Diagnosis typically involves ruling out other conditions like rheumatoid arthritis or lupus, and using established criteria to identify widespread pain.

Being formally diagnosed was a pivotal moment. On one hand, I felt validated and relieved. On the other, I realised there wasn’t a simple cure or quick fix. However, having a diagnosis gave me a framework for understanding what was happening inside my body.

Daily Life with Fibro

Living with fibromyalgia can be an unpredictable dance between “good days” and “bad days.” On a good day, I might wake up feeling only slightly stiff, with manageable pain levels. I can then do some light housework, go for a gentle walk, or meet a friend for coffee without feeling like I’ve run a marathon.

On a bad day, everything aches from the moment I open my eyes. My legs might feel heavy, my back might be on fire, and my brain might be in a fog so thick it’s hard to recall what day of the week it is. Simple tasks—like showering or making breakfast—can become monumental challenges. I’ve learnt to accept these fluctuations as part of my reality. I plan activities carefully, factoring in rest breaks and realistic goals.

I’ve had to become an expert in pacing myself, turning down invitations if they clash with my body’s need for downtime.

It’s not always easy—especially when friends and family expect the old me. However, being honest about my limits is crucial for staying as healthy and functional as possible.

Coping Strategies

Pacing

Pacing has become a lifeline for me. Rather than charging through tasks on the rare days I feel energised, I spread out my workload across several days. If I know I have to tackle housework, I break it down: vacuum one room, rest, do a bit of laundry, rest again. It sounds tedious, but if I ignore my body’s warning signs and push too far, I’ll crash later, which leads to even more pain and fatigue.

I have been known to get a bit over-excited about having a good day, do too much, and then experience a crash the next day. I have learnt from these experiences.

Gentle Exercise

When I first heard that exercise could help fibromyalgia, I was sceptical—how could I possibly work out when I could barely move without pain? But I discovered that gentle, low-impact activities are incredibly helpful for maintaining muscle strength and flexibility. Swimming is a good one because the water supports your body weight. Yoga and Pilates (modified for my limits) also help reduce stiffness. The key is to start slowly and listen to your body.

Over time, regular gentle exercise can reduce pain and improve mood.

I take daily walks with our dog and do yoga videos from YouTube.

Stress Management

I’ve noticed that stress is a major trigger for my fibromyalgia flare-ups. When I’m anxious, my muscles tense, and my pain spikes. By learning relaxation techniques—like deep breathing, mindfulness, and progressive muscle relaxation—I’ve found some relief. Taking five or ten minutes each morning to meditate or do gentle stretches sets a calmer tone for the day.

Medication and Supplements

There are various medication options for fibromyalgia, including certain antidepressants that target pain pathways, pain relievers (both over-the-counter and prescription), and muscle relaxants. Sleep aids may also be prescribed if insomnia is a big issue. Some people, myself included, explore supplements like vitamin D, magnesium, and omega-3s to see if they help with muscle pain and fatigue. Always consult a healthcare professional to tailor a medication or supplement plan that suits your unique needs.

I take pregabalin three times a day. It is actually a medication for epilepsy, but it has been show to help with neuropathic pain. I also take naproxen and co-codamol on pain days.

Support Network

Living with a chronic condition can be isolating, especially when other people don’t fully understand the pain you’re in. Building a strong support system is vital. I rely on my husband, but there are also online fibromyalgia forums. Sharing your struggles—and successes—with others who truly “get it” can ease feelings of loneliness and hopelessness.

Cognitive Behavioural Therapy (CBT)

Chronic pain doesn’t just affect the body; it takes a toll on mental health as well. CBT has helped me change negative thought patterns and develop practical coping mechanisms. By acknowledging difficult emotions and reframing my self-talk, I’ve learnt to handle the anxiety and sadness that sometimes accompany chronic illness.

Self-Care Matters

If I could pass on one piece of advice to anyone with fibromyalgia, it would be to prioritise self-care without guilt. Before my diagnosis, I thought self-care was indulgent or lazy. Now I see it as necessary maintenance.

Self-care can include anything that helps you relax or feel content—like soaking in a warm bath with Epsom salts to ease muscle tension, curling up with a good book, or simply enjoying the outdoors at a slower pace. I also make time to pamper myself with a soft blanket and a cup of herbal tea. These small actions help calm my nervous system and reduce the chance of a pain flare-up.

Fibromyalgia Is Real

I want every woman (and man) facing unexplained pain and exhaustion to know that fibromyalgia is a genuine, recognised condition. You are not lazy, weak, or overdramatic. The medical community continues to learn more about fibro every year, and while no single cure exists, effective management is possible.

I still have days when I feel that fibromyalgia runs my life.

But I remind myself that I’ve learnt strategies to cope and that I’m never alone in this journey. When I reach out for support, take breaks when I need them, and treat my body gently, I handle my condition much better. Fibro may be part of my story, but it doesn’t define me entirely.

By understanding our limits, respecting our bodies, and leaning on a supportive network—whether it’s a friend, a partner, or an online community—we can find balance and hope. Each day, I learn a little more about how to live alongside fibromyalgia without letting it rule my life. And I promise: with patience, knowledge, and self-compassion, you can too.