This page has been written by the Specialist Physiotherapist who works for the Mitochondrial service. The page provides information about fatigue, and ideas to help people with Mitochondrial disease manage their fatigue. This page is for people seen at the Mitochondrial clinic at the National Hospital for Neurology and Neurosurgery. Patients’ families or carer may also find this information helpful.
Fatigue and mitochondrial disease
Mitochondrial disease affects each person in a very different way. Each cell in our body has mitochondria, which make energy for the cell. Mitochondrial disease affects the way the mitochondria work. For some people this may result in feelings of muscle pain (myalgia) and fatigue, for others the lack of energy will cause cells in some areas of the body to be damaged. Mitochondrial disease affects different areas of the body for different people. Your doctor will be able to tell you how the disease affects you. People sometimes find it hard to keep active. This causes muscles to become deconditioned or weak, and can mean that you feel tired when you do things.
Ideas and suggestions to help manage fatigue
Try not to do everything when you feel good. This can mean that you “overdo” it and need to rest for days to recover. This is called the “boom-bust” activity cycle.
Planning small amounts of activity and rests.
Aim to very gradually increase what you do over weeks and months can help to optimise activity levels without negatively impacting on your fatigue. This graded approach, can help your body to gradually adapt to doing more, and should mean that you don’t need to rest for days to recover from activity.
Key principles to help manage fatigue and conserve energy
To help identify patterns and triggers for fatigue you can keep an activity/fatigue diary for a week.
Use the diary to record what you do, and how your fatigue levels vary, throughout the day. This can help to identify what activities most affect your fatigue, and can help to guide when you may need to rest.
Plan rests before you are tired, aiming to take 2-3 rests without stimulation from TV, mobile or laptop.
Plan ahead
Make a weekly timetable of the activities you want to and need to do. Try to:
- Plan to rest when your energy levels are low
- Spread heavy and light tasks throughout the day, pace yourself.
- Break tasks down into stages this can help to avoid fatigue and can make it easier to plan rests.
- Complete 5-10 minute blocks of activity, resting and continuing as able.
- Small parts of larger tasks can also be spread over the day or week.
- Prioritise the things you want and need to do.
- Think of alternatives, can you have shopping delivered for example.
Conserve your energy:
- Do the hardest jobs when you are feeling your best.
- Try to sit down to do things when you can, to help save energy for the rest of the day.
Sleep well, eat well and keep active:
The physiotherapist in clinic will be able to support you to think about exercising, to optimise your strength and fitness. Please ask about a referral for OT for more support with fatigue management.
Contact details
Clinical Specialist Physiotherapist Neuro-Muscular Diseases
The National Hospital for Neurology and Neurosurgery
Box 102, London
WC1N 3BG
Switchboard: 0845 155 5000 / 020 3456 7890 (There is no additional service charge for using a 0845 number. The cost is determined by your phone company’s charge).
Direct Line Telephone: 020 3448 8012
Email: uclh.
Websites:
The Clinical Specialist Physiotherapist is available from 9.00am to 5.00pm Monday to Friday (excluding bank holidays). Answer phone messages will be responded to in 2-3 working days.
Where can I get more information?
UCL Hospitals cannot accept responsibility for information provided by external organisations.
Services
Page last updated: 16 October 2024
Review due: 01 October 2026