Fatigue & Post-Polio Syndrome (PPS)
My muscles feel very tired and heavy, particularly after physical activity.
I feel an overwhelming sense of physical exhaustion. I wake up tired and feel very tired after doing my normal daily activities.
I find it increasingly difficult to concentrate and keep up with the demands placed on me. As a result, I have problems remembering things and make mistakes I wouldn’t usually make.
These are some of the things people with PPS tell us, and, as you can see, the fatigue can be both physical and mental and lead to a gradual reduction in participation and quality of life. Fatigue is one of the most common PPS symptoms.
In combination with some of the other PPS symptoms we see, these symptoms can have a substantial negative impact on someone’s life. Other symptoms include:
- Muscle and joint pain
- Breathing and sleeping difficulties
- Problems with walking
- Swallowing difficulties
Unfortunately, there is no cure for PPS; however, an accurate diagnosis of the condition is crucial. These symptoms are common across many different medical conditions, so it’s important you don’t just assume you have it, accept it and get on with it. A diagnosis often means that many other medical problems have been ruled out. A diagnosis also means that we can address your symptoms to help you manage them and improve your quality of life.
Fatigue is familiar with many neurological conditions and many other medical conditions. Occupational therapists and physiotherapists, and other health professionals help deliver strategies and advice to people who suffer from fatigue.
Here, we will look specifically at fatigue and how it can be managed better for you to live better day-to-day.
What is fatigue management?
It does what it says on the tin – it aims to support you to manage your fatigue. So often, we are ingrained into our routine; this is how we have always done it, so we automatically attempt things this way. As a result, we may not accept or consider that something has changed.
Fatigue management aims to increase your awareness of what activities cause your fatigue. This is often quite difficult to sit down and do on your own, and so a conversation with an occupational therapist can help pinpoint these activities.
Evaluating what you need versus what you want to do each week and how this fits into your schedule can help identify where difficulties arise. When people experience fatigue, it never stays the same; it can vary according to activity level, stress level, and sometimes there isn’t always a clear trigger.
The strategies and techniques aim to initially help you achieve a consistent, manageable level of activity and then have the skills to gradually increase certain activities. There are good days and bad days for no real reason; you haven’t done anything differently. Occupational therapists often use an outcome measure called the Fatigue Severity Scale. This can be useful to measure the severity and impact of fatigue over your everyday life over a period of time: a week.
How does it work?
By asking the following questions, we can start to look at how to make some minor changes that can increase your abilities and manage your fatigue.
Can this be done differently? For example, can we spread your appointments throughout the week? Can we organise your workspace differently? Can we prioritise? There is a huge scope here to reduce life’s mental and physical demands whilst maintaining your independence and success at a particular activity.
Can someone assist you? For example, with the laundry that takes all your energy and you don’t enjoy it. This might mean you are free to enjoy some family time later. Often people need to hear’ permission’ to outsource some of their daily activities – this is not a slippery slope, and it’s certainly not lazy. Remember, many hard-working families outsource domestic tasks by choice as they want more time for meaningful and enjoyable activities.
Can equipment support you? For example, is walking a short distance meaning you have no energy to complete the task? Could you consider some equipment meaning you can continue to do your shopping on your own? Walkers, scooters and other mobility devices are viewed negatively by some. However, we often hear from so many people that they wished they had done it years ago!
Can you complete this over more than one time? Taking a break or pacing means you can sustain your energy for longer. A short burst of activity and then a rest allows time to refuel your energy tank and means you can complete the activities you want to. For example, preparing the vegetables for dinner earlier in the day. It sounds simple, but when you live your routines day to day, it’s often challenging to identify these possible small changes which, combined, can make a massive difference to your life.
Am I getting enough sleep? This is a huge problem for so many adults. Seven hours is the amount you should aim for, but PPS symptoms, life stresses, and many other factors affect this. Pain, nodding off during the day and sleep apnoea, to name a few. Talking about this with a health professional may point you in the direction of a pain medication review, sleep studies, and look closely at your individual sleep hygiene. Not getting enough quality sleep feeds into your fatigue symptoms.
Am I doing the proper exercise? Doing regular, gentle exercise can help with fatigue. What you do, how often, and when you do it are all very important factors for exercise having a positive, not negative, effect. Hydrotherapy is an excellent way of exercising without the strain on your joints. Is this something you have considered?
What can I do?
- Keep a diary of what you are doing – review this. Do you need to do everything yourself?
- Plan and prioritise – schedule what you need to do and try a new routine
- Ask for help
- Look at your exercise habits – is it irregular, too much, too little? How does it leave you feeling?
- Seek out a consultation with an Occupational Therapist. They are very skilled in helping people with fatigue.
By Anne Biddlecombe