Chris Russell-White is a Rheumatology Nurse Specialist at the Western General Hospital in Edinburgh. No stranger to tackling the problem of tiredness amongst his patients, these are Chris’s top tips.
Why am I tired all of the time?
Chris says: Normal tiredness at the end of the day or after hard or different exercise is good. It’s a sign that things are working properly. If this isn’t improved by rest, for instance a good night’s sleep, that’s not good. Continual tiredness with a feeling of heaviness, tired muscles, unrelieved exhaustion and not being able to get going, especially when you’ve not been active, is described as fatigue.
Well, why do I suffer from fatigue?
Chris says: There are various reasons for this, and one or more may be the cause in your case. These are some of the most common:
• The less active you are, the weaker your muscles and the harder it is to be active.
• Inflammation uses energy and can often cause anaemia. This is when there is not enough iron in the blood to carry oxygen around the body.
• You may be less interested in eating and therefore your energy intake is poor.
• Pain can disturb your sleep and is also physically and emotionally tiring to deal with.
• Low mood because of pain, disturbed body image and inability to do what you want, makes it harder to get up and go.
• Your medication may not be right for you.
Is it normal to feel tired or fatigued even if I’m not having a flare-up?
Chris says: If you are just feeling tired it may be a good sign:
• Have you been more active?
• Have you had a longer day with less rest?
If it is fatigue and you are unable to shake off the feeling of exhaustion it could be related to your medicine. Amongst other drugs, methotrexate can do this. This varies from person to person and from drug to drug. Generally, why one person should have side effects and another not is unclear, but probably related to their genetic background. Daily treatment with steroid tablets can also be a problem by disturbing your sleep.
If my drugs are making me tired should I be taking them?
Chris says: You should not stop taking medicines except for infections or where there is a clearly related serious side effect, and you should inform your Rheumatologist, Nurse Specialist and GP. Never suddenly stop taking long-term steroids; the dose should always be carefully reduced.
In the case of fatigue related to treatment, you will need to consider switching to an alternative medication. Please discuss this with your Rheumatologist or Nurse Specialist and be very clear about what you want. You can often tell if the drug is the problem if you have stopped taking it because of infection and yet you feel better!
Is it just tiredness or might there be something else wrong?
Chris says: It is always possible that the fatigue is not caused by your arthritis, or medication or the factors noted above. It may mean that other investigations have to be undertaken – you may have picked up a common virus, for example. It is important that you remain positive and keep talking to your healthcare professionals who can help by ruling out other causes.
How can my nurse / doctor help combat my tiredness?
Chris says: Your nurse or doctor can help ensure that the disease is treated effectively with best-tolerated medicines.
In the case of sleep disturbance caused by shoulder or other joint pain, it could be helpful to inject the joints causing the problem with slow acting steroids. You might choose to discuss this with your specialists.
It may be helpful to also discuss with your specialist team different ways of taking painkillers during the course of the day, to help combat drowsiness. Or, it may be helpful to offer something to assist nighttime sleep.
These are all matters that should be discussed with your Rheumatologist, Nurse Specialist or GP.
What can I do to help myself?
Chris says: In many ways this is the most important thing of all.
A balance of exercise and rest (but not sleeping) during the day is important. Don’t overdo it but try to keep a relatively high level of activity when you’re not in a flare and end even do as much as you can when you are in a flare.
Help to keep your mood up by being fully involved in study, work and especially things that interest you personally.
Try to keep sleep for the night. Try to ensure that going to bed means going to sleep not spending hours on social media, the internet, watching videos or reading.
Take control and fight it. Organise and plan. Don’t lie back but don’t overdo things.
Tackle Tiredness Today:
If you feel tired all of the time…
Tell your GP or your rheumatologist or nurse. You do not have to cope with your tiredness alone. There may be simple changes to your lifestyle or treatment plan that could help.