Keeping a Pain Diary and Talking to the Doctor

Why keep a pain diary

A diary helps to:

• Describe pain accurately, instead of relying on memory, which is shaped by the worst or latest day.
• Spot patterns and triggers: time of day, weather, activity, meals, mood, sleep.
• Show what helps and what does not: heat, rest, exercise, a walking aid, a device, a medicine.
• Decide whether a treatment is working, such as a new medicine, a brace or TENS, using before and after readings.
• Recognise change: a new pain, a worsening pain or a pain that has moved.
• Support the conversation with the doctor and physiotherapist, and speed up the right diagnosis.
• Put the person in control, which itself can reduce distress.
• Support safe medicine use: record each dose and effect, helpful when several family members help.

What to record

Keep it simple, or it will not be done. A page a day, or a small notebook, is enough. Include:

1. Date and time.

2. Where the pain is. Name the place: right knee, lower back, left shoulder, both hands. A body diagram helps: shade the area. Record if it moves or spreads, such as down the leg.

3. How bad it is. Use a simple scale. - 0 to 10 scale: 0 means no pain, 10 means the worst pain imaginable. Record at the same times each day, for example morning, afternoon and bedtime, and also at the worst moment. - Words scale: none, mild, moderate, severe, very severe, which suits people who find numbers hard. - Faces scale: pictures of faces from smiling to crying, useful for people with limited speech or reading.

4. What the pain feels like. Aching, sharp, stabbing, burning, tingling, throbbing, electric, cramping, stiffness.

5. When it happens. On waking, after sitting, on walking, at night, after a meal, after a certain activity. Note how long stiffness lasts in the morning.

6. What triggers or worsens it. Walking, stairs, cold weather, damp, lifting, long sitting, squatting, a particular food, stress.

7. What eases it. Rest, heat, cold, medicine, massage, position, a stick, TENS; see heat or cold for joint pain and TENS units for pain. Record how much it eased and how long it lasted.

8. Medicines and treatments taken. Names as on the packet, dose, time, and effect, including creams, tablets, herbal products and supplements. Note any side effects such as stomach upset, drowsiness, dizziness, constipation, rash or swelling. See painkillers and older adults.

9. What the person could and could not do. Walk to the market, climb stairs, dress, bathe, cook, play with grandchildren, pray, attend a function. This is the most useful information for a doctor; function matters more than numbers.

10. Sleep. Hours slept, night waking due to pain; see sleep problems in older adults.

11. Mood and energy. Low, worried, irritable, tired, happy. Pain and mood affect each other; see depression in older adults and anxiety in older adults.

12. Appetite and bowels, since pain and some medicines affect them.

13. Falls and near-falls.

14. Other symptoms: fever, swelling, redness, heat in a joint, weight loss, numbness, weakness, bladder or bowel changes.

Not every item is needed every day. Choose a few, and keep the same ones, so you can compare.

A simple daily format

You can copy this layout into a notebook:

• Date:
• Morning pain (0 to 10), where:
• Afternoon pain:
• Evening/night pain:
• Worst pain today (time, what I was doing):
• What helped:
• Medicines taken (what, when):
• What I could do / could not do:
• Sleep (hours, woke because of pain?):
• Mood (good, okay, low):
• Anything new or worrying:

A weekly summary on a separate page, with the average pain score and the best and worst days, makes the doctor visit shorter and clearer.

Who should do it, and how

• The person themselves if they can write or speak into a phone; encourage them to note it, with a spouse or a grandchild to help.
• A family member or carer who sits with them each evening and asks a few questions.
• A shared notebook or phone note among family, particularly in a joint family, where several people are involved; see care diary and handover notes.
• A phone app or spreadsheet, if comfortable. A paper notebook is perfectly fine.
• At the same time every day, such as after dinner, so it becomes a habit.
• For two weeks before the visit, as a minimum, longer for chronic pain.

Use the person's own words. Avoid putting words in their mouth. Praise honesty about pain rather than "being brave".

If the person cannot describe pain

People with dementia, stroke-related speech problems, severe frailty or intellectual disability may not say that they are in pain. Under-treatment is common. Watch for signs:

• Facial expression: grimacing, frowning, tight eyes, wincing.
• Sounds: moaning, groaning, crying, calling out, sighing, or aggressive speech.
• Body language: guarding a limb, rubbing, rocking, restlessness, stiffness, a tense body, pulling away on touch.
• Behaviour changes: refusing to walk or eat, agitation, aggression, withdrawal, wandering, sleeping more, or poor sleep.
• Movement changes: limping, reluctance to stand, slowness.
• Changes in appetite or mood.

A pain scale designed for people with dementia, such as an observational scale, may be used by nurses. Record what you see, when, and whether a treatment seems to settle it. See dementia challenging behaviours and delirium in older adults: new agitation or confusion can be due to pain, infection or other illness and needs medical attention.

Getting ready for the visit

• Bring the diary and a short summary: when it started, where, how bad on average and at worst, what makes it better or worse, what treatments have been tried, what the person cannot do now.
• Bring all medicines, including creams, herbal products, supplements, and any medicines from other doctors, in a bag or a list; see preparing for a doctor's visit with a parent and keeping a health record at home.
• Bring previous reports and scans.
• Bring spectacles and hearing aids.
• Write down questions. Number them in order of importance.
• Choose who goes: the person who knows the day-to-day situation. If the patient prefers, bring a family member for support.
• Tell the doctor the most worrying thing first. Doctors have limited time.
• Say how the pain affects daily life, not just its intensity.

Questions to ask the doctor

• What is causing the pain? Do we need tests?
• Is this serious? What warning signs should we watch for?
• What are the treatment options, including non-drug options such as exercise, physiotherapy, heat, cold, weight management and supports?
• What are the benefits and risks of each medicine for my parent, given other health problems and medicines? See polypharmacy and deprescribing and medicine side effects families should watch.
• How should medicines be taken, for how long, and with what precautions? What should we avoid, such as certain over-the-counter painkillers?
• What if the pain is not controlled?
• Is physiotherapy suitable? How often?
• Should we see a specialist?
• Are there activities to avoid or encourage?
• What should we do about sleep and mood?
• When should we come back, and when should we call or go to hospital?

Ask the doctor to write down the plan, or take notes. If you do not understand something, say so.

Talking about pain honestly

• Say how pain affects life: "He cannot walk to the temple now," "She wakes three times a night."
• Do not minimise. Do not exaggerate. Describe the facts.
• Mention fears about medicines and addiction, or cost, so the doctor can address them.
• Mention herbal and traditional treatments being used.
• Tell the doctor about other symptoms, mood and stress.
• Mention falls and near-falls.
• Say what matters most to the person: sleep, walking, praying, cooking, playing with grandchildren.
• Agree on realistic goals: for example, "to walk to the park twice a week" rather than "no pain at all."

After the visit

• Update the diary with the new plan and any changes.
• Give new treatments a fair trial, as the doctor advises, and note effects.
• Do not stop or change medicines without advice.
• Share the plan with other carers.
• Book a follow-up.
• Review the diary together every few weeks and adjust.

When to ask a professional

See a doctor promptly if pain is sudden or severe, follows a fall, comes with fever, weight loss, a hot swollen joint, chest pain, weakness or numbness, loss of bladder or bowel control, or keeps worsening. A physiotherapist can use the diary to tailor exercises. A pharmacist can review medicines and side effects. A pain clinic or palliative care team can help with persistent or complex pain; see chronic pain in older adults. A psychologist or counsellor can help with the emotional side of pain.