Fatigue and pain - practical ways to pace your day

S Dawson, Occupational Therapist, May 2003

Let's discuss how you can all become managers of your own lives.
Managers in the business world direct the show. They don't do everything themselves to get the job done. They work with others.
What makes them managers is that they are responsible for making decisions and making sure that these decisions are carried out.

I would like to suggest that you too could become managers of your own life and the condition of lupus.

• You gather information from friends, family, the Lupus Support Group, the medical profession and written material.
• You hire consultants who may be your physician, your GP and OT, physio, pharmacist, or other health professionals.
• Once they have given their best advice, it is up to you to follow through.

The key to success in any undertaking is first learning a set of skills and then practicing them until they are mastered - just like learning to read as a young child, or learning to play golf as an adult.

So perhaps today you will learn some skills that you can try to apply regarding fatigue and pacing your day, working with your highs and your lows.

Pain and fatigue in lupus can limit you in a variety of ways. You know more than I do about this.
Anyone want to offer ideas about the ways that it limits you?
They may prevent you from completing a specific task, hinder the progress of your daily activities, or even leave you feeling completely overwhelmed.
From simple activities to social activities, they can interfere with your life - and fear of fatigue may prevent you doing things that you want to do.

So lets look at some problem-solving approaches for overcoming various obstacles you may encounter in everyday life.
Included are strategies for using your body efficiently, and labour-saving ideas and products that can make your daily activities easier and more pleasant.
But before we discuss strategies, it might be helpful to talk more about pain and fatigue.

Pain can occur for different reasons with lupus.
More than 90% of people with lupus will experience joint and/or muscle pain at some time during the course of their illness.

At the onset of the disease, I understand that the major complaint of more than half of lupus patients is pain in the joints.
The major cause is inflammation of the joints. This is called arthritis.

However pain in and around joints is not always lupus arthritis, and may be due to other medical complications, so it is always important to be checked for the cause.
On a practical level, performing a stressful activity for long periods of time will increase the likelihood of pain. For example, writing a letter for 5 minutes may increase stress in the fingers but no pain ; continuing to write for one hour might cause pain that can last for some time.

Increasing the load on joints will increase the likelihood of pain, such as carrying heavy shopping bags, climbing stairs.

Fatigue is a common human experience. It occurs when certain basic needs are not met, eg. not getting proper food, enough sleep, or exercise.
It can result from inflamed joints or from depression.
Too much activity can also cause fatigue.
What is too much? For one person running 10 kilometres is not tiring, and for another just doing a load of washing is too much.
It is important to know your limits, especially with lupus.

Inflammation, anaemia, and chemicals such as cytokines can cause fatigue in lupus.
Worsening disease activity may lead to fatigue but so can lack of rest, or exercise.

What is good to work out initially is the underlying problem, develop an understanding of fatigue and how it affects you personally, gain optimal control of the lupus if possible, understand the symptoms, use energy conservation and improve sleep and rest patterns.
Relaxation may also be helpful.

Remember that fatigue may be a warning to take it easy, or that there is a flare up.
Take time to balance rest and activity.
Pace your day. We all need to do this, but often people can push through for a time, then it catches up.
Exercise is vital for its physical and mental benefits.
Meditation can help.
Unhelpful activities can increase fatigue such as alcohol in excess, smoking.

Managing fatigue

• Do the obvious - rest. Take a short nap once or twice a day. If this is impossible, then have a cup of tea and rest for short periods.
• Fatigue cannot be seen and often people do not recognise it. Therefore tell your friends, your boss, your family that fatigue is one of the problems with lupus. Explain that you may need a couple of periods of rest from time to time. You not being lazy but learning how to pace your energy levels.
• Take a good look at yourself and your own willingness to have a rest. Often our self-image is one of being indestructible, super-mum or super-dad, or the perfect worker. Can you give yourself permission to take time out ?
• Conserve your energy. Use efficiency principles. If you plan and organise your tasks and workspaces you will eliminate unnecessary steps, which saves energy and time. This will reduce fatigue. Both tension and fatigue are increased when we rush.
• Plan :
  • Is the task necessary?
  • Can it be simplified?
  • What is the best time of day to complete the tasks that need to be done?
  • Do I need rest periods to complete the task?
  • What is the best position to do it?
• Use lightweight objects to reduce stress and strain on joints, pain and fatigue.
• Use convenience items to decrease length of time and number of steps needed to complete a task to reduce pain and fatigue - eg. microwave, electric hedger, permanent press clothing to avoid ironing.

Let's take an example:
I am exhausted when I carry groceries. My back and my hands also hurt form carrying those plastic bags.
List ideas :

• carry smaller loads
• hold bags closer to body when carrying
• use a trolley to and from car
• use cotton bag
• seek assistance when shopping
• use a backpack, etc.

Tips for fighting depression

Give yourself time to understand that feelings of depression and loss are a natural process, but don't get stuck there. Be honest with your feelings, and if you need help, ask.

Try not to feel sorry for yourself: fight it! The emotional ups and downs are part of your condition. It's sometimes easier to give in to depression, but stay positive.

If thinking about the future makes you unhappy, then don't think that far ahead. Sometimes focusing on the here and now will get you through.

Positive tips :

• Learn all you can about your condition; it will help you regain a sense of control.
• Learn to accept your limitations. There are naturally going to be some activities that you can't do any more, but focus on those that you can, or find some new ones.
• Allow yourself to feel tired. This doesn't mean you should feel guilty about the things you haven't done, or can't do. When you need to rest, rest.
• Try to eat well, avoid stress and, above all, talk to people - your doctor, therapist, friends - or join a support group.

Finally . . .
Don't be afraid, or too proud, to ask for help.
 

Disclaimer :
The Lupus Group of W.A. (Inc.) does not recommend or endorse any products, drugs, treatments, procedures, medical or health professional in this article. We suggest you discuss this information with your doctor or specialist.