Post-stroke fatigue: why it happens and how to manage it

After a stroke many people expect weakness, speech difficulties or problems with vision, and are surprised by how exhausting everyday life becomes. The Sherwood Forest Hospitals leaflet defines fatigue as the feeling of extreme tiredness or weakness which can make it difficult to perform ordinary tasks, notes that it affects everyone differently, may be associated with pain and can leave people feeling they have little control over their lives. It says it can be frustrating, can slow recovery and can even affect those who are doing well after a stroke.

Northern Ireland Chest Heart and Stroke describes it as one of the most common side effects after stroke and stresses how it differs from usual tiredness: it does not subside with rest, and many people find it does not relate directly to how active they have been. Because it is invisible, it can be hard for family, friends and colleagues to understand, and the charity notes that living with its unpredictable nature can be frustrating and, for some, very disabling.

Northern Ireland Chest Heart and Stroke says fatigue after stroke is likely to be caused by a mixture of physical and emotional factors. Physically, the impact of the stroke on the body and brain can trigger fatigue, especially in the early weeks and months because of the healing process. Rehabilitation can be very tiring because it involves learning to do things in a completely new way. Muscle weakness means that activities such as walking may use more energy than they used to, and muscle stiffness or joint pain can disturb sleep.

Emotionally, it is normal after a stroke to feel stressed, anxious, frustrated or depressed, and these feelings can come with a sense of fatigue and can also affect sleep. The NHS notes that cognitive behavioural therapy may be part of a home recovery plan to help with anxiety, depression and tiredness.

Not all tiredness after a stroke is post-stroke fatigue, and some contributors can be treated. The leaflet from Northern Ireland Chest Heart and Stroke lists medicines that have fatigue as a side effect, such as beta blockers for high blood pressure, epilepsy drugs and antidepressants, and advises discussing this with your doctor and never stopping medication without advice. It also lists anaemia, diabetes and an underactive thyroid, sleep problems such as insomnia and sleep apnoea, difficulty with swallowing or chewing that affects nutrition, and pain such as muscle pain or headaches.

The NHS tiredness page describes similar causes in general, including sleep problems, depression and stress, some medicines and conditions such as sleep apnoea, iron deficiency anaemia, diabetes and an overactive thyroid, and says tests such as blood tests may be needed. It advises seeing a GP if tiredness has lasted a few weeks without a clear reason, affects daily life or comes with other symptoms such as weight loss or mood changes.

• Ask your GP or stroke team to review medicines that may add to tiredness.

• Mention low mood, anxiety or poor sleep, which are treatable.

• Ask whether blood tests for anaemia, diabetes or thyroid problems are needed.

• Tell the team about snoring, gasping at night or morning headaches, which can point to sleep apnoea.

Northern Ireland Chest Heart and Stroke says there are currently no specific treatments or medications for post-stroke fatigue, so self-management is key, and that fatigue can improve over time. Its practical advice includes telling family and friends how you feel and what will help most, recognising triggers (which can be obvious, like cleaning, or less obvious, like showering or washing hair), resting when you need to while being mindful of daytime naps affecting night sleep, and keeping active, breaking activity into smaller amounts, for example three 5-minute walks instead of one 15-minute walk.

The same leaflet suggests a bedtime routine, limiting caffeine, keeping to a healthy weight and avoiding large meals, skipped meals and high-sugar snacks, planning activities for when you feel less tired, and accepting that some days will be better than others without overdoing it on a good day.

The Sherwood Forest leaflet describes pacing in more detail: planned breaks within or between activities, taking things steadily rather than carrying on to exhaustion, and avoiding the cycle in which a good day leads to overdoing it and a bad day follows. Its tips are to prioritise activities, set goals broken into smaller stages, plan activities, take regular rest breaks, know your limits, restrict the time you take, stop when the time has passed, decide how often you will do the activity and increase by small increments such as ten percent.

The NHS says that when you leave hospital your healthcare team continues to support you through a home recovery plan, and that after about 6 months you should get a review of your progress; if you do not, speak to your team about it. Fatigue is a legitimate reason to raise at any review, and your stroke team or GP can tell you what support is available locally.

Seek urgent medical help (999) for any new stroke symptoms, even if you are already known to have had a stroke, and do not assume that new symptoms are only tiredness.

On the NHS, stroke rehabilitation is delivered through hospital and community stroke teams, with GPs managing ongoing tiredness checks and referrals. Private neurorehabilitation, occupational therapy and physiotherapy are available, and the pacing and self-management principles described here are broadly the same.