First things first, what is fatigue?
Fatigue is different to tiredness, as it cannot be reduced by sleep alone. Many people living with a chronic illness such as PoTS experience fatigue that lasts a long time, or comes in waves. If this is not managed, it can begin to affect day to day life.
There are several reasons why you may feel fatigued
- PoTS itself. The autonomic (involuntary) nervous system being in overdrive may mean your body is working harder. Think of it as being similar to having a sticky accelerator pedal in a car.
- Other conditions that may present alongside PoTS, including, low blood pressure, Joint Hypermobility Syndrome or Chronic Fatigue Syndrome. We know that the more conditions a person has, the more likely they are to experience fatigue.
- Medication can be very helpful in the management of PoTS symptoms, but fatigue is a common side effect when taking many of the medications used such as Beta Blockers, Fludrocortisone, Ivabradine, Selective Seretonin Reuptake Inhibitors (SSRIs) and other antidepressants.
- Sleep problems - PoTS patients often have poor quality of sleep. This compounds fatigue and therefore impacts upon quality of life.
- All of the above and life! Adding self-care, a job, children and appointments can increase fatigue for people living with a chronic illness.
The effects of fatigue are many and can impact upon every system in the body.
- Physical- You may feel very tired and wonder why sleep is both difficult and unhelpful in solving your tiredness. Because of this, your energy levels may be affected, which could lead you to engage in less activity. This is understandable; however, inactivity can lead to muscle stiffness and pain.
- Cognition (the way we think)- You may be finding it hard to concentrate and focus on tasks, which can lead to a feeling of ‘brain overload’. You may feel that your memory is poor and this can have an impact both at work and at home.
- Behaviour (the way we act)- Fatigue may lead to reduced working hours, time off sick or less engagement in your favorite activities, such as seeing family and friends. Engaging in enjoyable activities is so important, as they improve our physical and mental health. You may feel worried that if you engage in ‘fun’ activities, you will feel even more fatigued, but this can be achieved over time.
- Emotions (how we feel)- You may be feeling frustrated, irritable or low in mood and it is important to share these feelings with someone you trust. This could be a family member, friend or health care professional. It is important to remember that fatigue tends to change day to day and while there can be no guarantees, this symptom can be managed.
The good news is that while PoTS-related fatigue cannot be taken away completely, there are so many things you can do to manage it. The strategies on this page can help you to feel more in control of your fatigue, but they do take commitment and do not always have an immediate effect.
Keep an activity diary
Keeping an activity diary is a great place to start, as it will allow you to record your activity and rest. Over time, this can help you to recognise patterns in your day and also what is making your fatigue worse.
The following is a real life example of a ‘good day’
6.30am Shower/get dressed/dry hair
7am Get the kids ready for school and have breakfast
8.30am School run
10am Work emails/presentation preparation ****
11am Walk the dog
2pm Cup of tea/rest
3pm School run
4pm Prepare dinner
5pm Dinner time ****
6pm Bath kids
8pm Put kids to bed
9pm Check emails/watch TV
11pm - 7am Sleep
RED- high energy demand
ORANGE- medium energy demand
GREEN- low energy demand
***- fatigue spike
We’re able to see that this person has engaged in nine red activities and two orange and green. Interestingly, there are only two periods of rest over a 16.5 hour time period. While this person has only experienced two ‘fatigue peaks’, they may go on to do less the next day, but experience more fatigue. This is known as a ‘boom or bust’ cycle, which will be talked about further down the page.
This person could…
- Continue their normal activities over a two week period to get a true picture.
They could then…
- Balance their colours more evenly.
- Schedule double the amount of rest blocks.
- Aim for a balance of physical, mental, emotional and social activity
***Top tip for keeping an activity diary*** It is important to remember that your colours may differ, as for one person a red activity may be walking the dog, but for another it may be having a bath. Have a think about which activities will take which colours. Do not forget to include mental and emotional activity on there too!
Pacing- the most important technique!
Once you have your activity diary, you can go on to pace. Pacing is all about balancing activity and rest to bring about improvements in your fatigue levels. It offers you the chance to control the effects of PoTS and in time can lead to you being able to do more.
It is important to remember that activity includes both mental and emotional tasks as well as the more obvious physical sort. It can be tempting to do too much on a good day in order to make the most of your energy; however this can often leave you with nothing in reserve over the following days. This is known as a ‘boom or bust’ cycle.
It can be useful to think of your energy levels as a bank account…
Top tip for pacing- do a little less on ‘good days’ to enable you to achieve more on ‘not so good’ days
Many people with PoTS adapt their activities of daily living to make them easier and do a great job of this. But it is important to note that changing the ways we do things can be very difficult, as we get in to habits and routines over a period of time. For example, the person in the activity diary got straight out of the shower, got dressed, dried their hair and then got the children ready for school. Maybe this is how their morning routine has looked for 2-3 years. However, this could be tweaked so that ten minutes of rest takes place between getting dressed and drying her hair, or perhaps the children could take on one or two more responsibilities to help with the morning routine.
Another example could be washing or bathing. Many people stand in the shower. Surely that is what everyone does!? For some people with PoTS the heat of the shower combined with standing in one place can trigger palpitations and dizziness, which is unpleasant and often frightening. The resolution to this could be to open the windows, turn the heat of the shower down or to consider equipment such as a shower stool to sit on. This could be self-purchased relatively cheaply, or an occupational therapist could carry out an equipment assessment.
Occupational therapists consider all needs- physical, psychological, social and environmental and aim to increase function and quality of life. They use a number of techniques to do this, including equipment provision (grab rails, wheelchairs, perching stools, bath boards), graded rehabilitation, fatigue management and improving community access. If you do not feel you are managing your activities of daily living and this is impacting on your quality of life, your GP will be able to process a referral to your local community occupational therapy team.
Top tip for adapting activity- think hard about how you can make each activity a little easier and try it out for a minimum of two weeks
Diet and exercise
Diet and exercise are important for people living with PoTS. Combining sensible exercise with a balanced diet can help you to maintain a healthy weight and gain the energy you need for activity. Weight loss or weight gain can make coping with fatigue more difficult and if you are struggling with this, you can ask for a referral to a dietician. What you eat can also make a difference. For example, large, hot meals can make fatigue worse, while caffeinated drinks and sugar may give a quick boost of energy, but can leave you feeling more tired later in the day.
Often the worry of feeling more fatigued can put people off exercise, but it is important to keep the body working as efficiently as possible and physical activity is a very good way of doing this. It is best to find a level of exercise that you can manage on a daily basis, that you enjoy doing, and that will not put you at risk of harm. Remember to wear loose fitting, cool clothes and to drink plenty of water before, during and after. Your GP, specialist or a physiotherapist will be able to advise you on exercise if you are unsure.
Take a look at the following pages for other factors which will influence fatigue. advice
Written by: Jenny Welford
Medically approved by: Dr Kavi, Prof Newton
Production date 1/1/2017