Fibromyalgia & mental health

Pain experts describe fibromyalgia as a condition where the pain itself is the main health problem, not a sign of damage somewhere else. The nervous system is turning signals up.

Fibromyalgia can affect anyone, including children. It usually starts in middle age, and risk rises with age. It affects people of all racial and ethnic backgrounds, and more women than men.

Having lupus or rheumatoid arthritis is linked to a higher chance of fibromyalgia.

The exact cause is not known. It runs in families, so genes probably play a part. It is often triggered by a physical or emotional event like an injury, infection or stress.

There is no cure yet, but symptoms can be managed. They can change over time, sometimes getting better or worse suddenly.

Fatigue is one of the core features of fibromyalgia. It can make ordinary tasks feel heavy.

Many people with fibromyalgia have trouble concentrating or remembering, often called “fibro fog”.

Trouble sleeping is a core part of fibromyalgia. Poor sleep can make pain, mood and fog worse.

Some people find bright light, noise, strong smells or temperature changes hard to tolerate. Stiffness, tenderness to touch, numbness or tingling, and gut problems can also happen.

Ideas that can help

• Dimmer or softer lighting
• Layers of clothing for temperature changes
• Noise-reducing earplugs or headphones
• Quiet breaks in busy places

Months of appointments without answers can bring frustration, worry and self-doubt. Those feelings make sense.

Things providers may ask about

• How long you have had symptoms
• How severe the pain is
• Other health conditions you have
• Tiredness, memory or focus problems
• Where your pain is

Getting a diagnosis can bring relief that your experience has a name. It can also bring sadness about a long-term condition. Both feelings can exist at once.

You could say

• “Could I be referred to a specialist?”
• “I’d like this written in my notes.”
• “This is affecting my work and sleep. I need help with it.”

Living with daily pain and tiredness, and giving up things you love, can lead to depression. Talking therapies like CBT can help with low mood alongside fibromyalgia.

Physical or emotional stress, injury and infection are common triggers for fibromyalgia. Learning to manage stress is part of standard care.

Traumatic events are being studied as a possible risk factor for fibromyalgia. PTSD is also more common in people with fibromyalgia.

Brain imaging shows real changes in how pain signals are handled in fibromyalgia. Stress and mood are part of the picture, not the whole of it.

Low-impact activities like walking, cycling, swimming and water exercise work well for many people with fibromyalgia.

Aiming for about 150 minutes of moderate activity a week is a long-term goal. It can be broken into short sessions.

Some studies of tai chi, qigong and yoga have shown positive results for fibromyalgia, though there is not yet enough high-quality research for firm conclusions. They are generally safe with a qualified teacher.

Overdoing activity can make symptoms worse. Pacing means spreading energy across the day rather than using it all at once.

A physical therapist or exercise physiologist can design a program that fits you. Check with your clinical provider before starting something new.

CBT helps you change how you think about pain and builds skills to manage it. It can be done one-to-one or in a group, and it often works best combined with other approaches.

Acceptance and commitment therapy is one of the talking therapies offered for fibromyalgia. It focuses on doing what matters to you, even with pain present.

Mindfulness training has led to short-term improvements in pain and quality of life in some studies, though the studies are few.

Most studies of massage suggest short-term relief of some symptoms, but the evidence is not conclusive. Massage should not cause pain.

Ideas

• A notebook or notes app for everything
• Calendar reminders for appointments
• One set place for keys and wallet
• Photos of things you need to remember

Ideas

• Break big tasks into small steps
• Do thinking tasks at your clearest time of day
• Turn off notifications while you focus
• Write down what you were doing before a break

Spread your energy across the day instead of using it all at once. You may need to change how much you do or how long things take.

You could say

• “Could you send me that in writing?”
• “Fibromyalgia affects my memory sometimes, so I write things down.”
• “I need a minute to find the word.”

Helpful things to say

• “How much energy do you have today?”
• “I believe you.”
• “What would help most right now?”

Things to avoid

• “Have you tried just exercising more?”
• “It’s probably stress.”
• “You don’t look sick.”

• Drive to appointments
• Go for a gentle walk together
• Help with heavy chores
• Keep inviting them, and accept cancellations kindly

Support groups connect you with others living with fibromyalgia. Many are online, which helps on low-energy days.

Self-management strategies can reduce pain and disability in fibromyalgia. Group courses, like the Chronic Pain Self-Management Program, teach skills such as pacing and coping.