Living well with fibromyalgia

Living with fibromyalgia is hard, but many people find ways to feel more in control. These tips will not all suit everyone. Try one or two at a time and see what works for you.

Pacing: the "boom and bust" trap

On a good day, it is tempting to do everything you have been putting off. Then you pay for it with days of pain and exhaustion. This is called the boom and bust cycle.

Pacing means doing a steady amount each day, whether it is a good day or a bad one. To start pacing:

1. Find your baseline. Work out how much of an activity you can do on a bad day without making things worse. That is your starting point.
2. Break tasks into chunks. Do the ironing in three 10 minute bursts instead of one long session.
3. Rest before you need to. Take short, planned breaks, not just when you are exhausted.
4. Build up slowly. Once your baseline feels steady, increase it by a small amount.
5. Plan your week. Spread out the harder jobs and leave room for rest.

Managing flares

• Make a flare plan on a good day. Write down what helps, what you can drop, and who can help.
• Keep a few easy meals in the freezer for bad days.
• Tell people close to you what a flare looks like, so they can help.

Sleeping better

• Go to bed and get up at the same time each day, even at weekends.
• Keep your bedroom dark, quiet and cool.
• Avoid caffeine after lunchtime, and cut down on alcohol.
• Try to avoid screens for an hour before bed.
• If pain wakes you, a heat pad or a pillow between your knees may help.

Coping with fibro fog

• Write things down. Use a notebook, a wall calendar or reminders on your phone.
• Do one thing at a time. Multi-tasking makes fog worse.
• Do important tasks at the time of day when you feel sharpest.
• Keep things in the same place, like keys and glasses.
• Use a pill organiser and phone alarms for medicines.

Everyday aids

Aids and gadgets can save energy and reduce pain. Examples include:

• a perching stool in the kitchen, so you can sit while you cook
• light pans, easy-grip knives and a kettle tipper
• a shower seat, grab rails and a long-handled sponge
• a raised toilet seat
• sock aids, long shoe horns and elastic laces
• a trolley to move things around the home

You can ask your council for a free needs assessment from adult social care. An occupational therapist may then recommend equipment and small changes to your home, often at no cost to you.

Looking after your mental health

Long-term pain can wear you down. It is common to feel low, anxious, angry or lonely. These feelings are a normal reaction, and help is available:

• talk to your GP
• in England, refer yourself to NHS Talking Therapies
• call Samaritans free, any time, on 116 123
• join a support group, online or in person

Finding support

• Fibromyalgia Action UK runs a helpline and local support groups.
• Versus Arthritis has a free helpline and information about fibromyalgia.
• Local pain support groups may meet in your area. Ask your GP surgery or library.

If you care for someone with fibromyalgia

You may be able to get support as a carer, such as a carer's assessment from your council, and possibly Carer's Allowance if the person you care for gets certain benefits.