Chronic Fatigue

What is the difference between “chronic fatigue” and “chronic fatigue syndrome”?

Chronic fatigue syndrome is a disorder involving extreme fatigue that interferes with functioning. This fatigue does not go away with rest and can’t be explained by an underlying medical condition.
Chronic fatigue syndrome is different that the fatigue commonly experienced when an individual has a chronic condition. That is, feeling fatigue is a common symptom of living with a chronic condition. Even though there are some similarities (e.g., the fatigue in both cases does not go away with rest), fatigue in chronic conditions is different than chronic fatigue syndrome. Because the fatigue in a chronic condition can be explained by an underlying medical condition (that is the fatigue is a common symptom of chronic conditions), it would not be classified as chronic fatigue syndrome.

What is “fatigue” in chronic conditions?

Fatigue has been described as “an overwhelming sense of tiredness, lack of energy, and feeling of exhaustion”. Other words used to describe fatigue in chronic disease include “tiredness”, “feeling worn out”, “exhausted”, “needing to rest”, or “slowed down” to describe their experience of fatigue.

Fatigue is experienced by all individuals. Fatigue is experienced in a number of chronic health conditions including inflammatory disorders, infections, and cancers. However, fatigue in chronic conditions is different in that it is impairing, severe and relentless and does not improve with rest or sleep. In contrast, fatigue experienced by individuals without a chronic condition experience fatigue as temporary, relieved by rest or sleep, and related to predictable factors such as increased activity or stress.

How common is fatigue in inflammatory arthritis?

It is common in inflammatory arthritis with over 50% of individuals with SpA reporting significant fatigue. Fatigue is now understood as a “core symptom” of SpA.

How does fatigue impact individuals living with inflammatory arthritis?

Individuals with SpA report that fatigue has a significant impact on their physical, social, and psychological well-being. Here are some of the common symptoms associated with fatigue: 

Physical impact

  • tiredness
  • lack of energy
  • pain
  • stiffness
  • achy limbs/joints
  • lethargy/restlessness
  • sleep deprivation
  • headaches

Social impact

  • disruption and limitation of basic activities of daily life such as housework or gardening.
  • tasks taking longer
  • disruption to plans for social activities (e.g., evening out with friends), family activities, and travel
  • concern about ability to drive safely
  • decreased work productivity

Psychological impact

  • lack or diminished enthusiasm and motivation
  • apathy
  • low mood
  • depression
  • anxiety
  • irritability, frustration, anger
  • diminished concentration
  • poor memory or forgetfulness
  • feelings of failure, lack of confidence, and a dread of doing things

What are the causes of fatigue in inflammatory arthritis?

Fatigue in inflammatory arthritis is not caused by a single factor. In almost all individuals, fatigue is caused by multiple factors.

Here are just some of the factors that associated with fatigue in chronic conditions:

  • sleep problems or disruption of normal sleeping habits
  • too much rest
  • too little rest
  • pain
  • medications such as pain-relieving medicines
  • stress
  • anxiety or depression
  • electrolyte imbalances
  • poor appetite
  • poor nutrition
  • dehydration
  • lack of exercise or mobility

What can you do about fatigue?

Despite the fact that fatigue is widespread in SpA and has a meaningful impact on functioning, patients often report that their healthcare providers do not spend a lot of time discussing fatigue with them and most patients report relying on their friends and family or self-managing their fatigue.

There is no one cause or treatment for fatigue in SpA. There is no “cure” for fatigue in chronic conditions. Addressing fatigue will always involve ongoing management. Here are some of the ways that you manage fatigue.

Pacing

Pacing involves taking breaks in order to manage energy levels. It involves trying to keep your activity levels constant despite changes in pain or fatigue. What many individuals with chronic conditions experience is that when they have a “good” day they try to get as much done as possible. This is normal, understandable response. However, individuals also report that they usually end up “paying” for their busy day for a few days afterwards during which they can do very little activity. This “boom and bust” cycle is common and tends to make pain and fatigue worse over time. The key to pacing is to set an amount of activity that you can do even on a “bad” day and then to stick to that amount of activity even on a “good” day. In fact, the most difficult part of pacing is holding back on a good day.

Christine Miserandino described this well with her “Spoonie Theory”.  Miserandino, who lives with a chronic condition, describes her ability to carry out her daily activities by counting spoons. Some days she has enough spoons to get her tasks done and sometimes she doesn’t have enough. If you have a chronic condition it is likely that you have less “spoons” than you used to. Your energy levels are likely not as high as they used to be. This can be very frustrating for individuals who are used to being busy and accomplishing a lot. So, it’s important to spend your “spoons” on the things that really matter to you. Think about the things that anyone could do (e.g., laundry) and the things only you can do (e.g., comforting your child when they have a bad day). For example, many people could wash the dishes but only you can be a mom or a dad to your child. Save your “spoons” for the things that really matter and ask for others to help to do the other things. If you are working, ask about a flexible work schedule or reduced hours or perhaps the ability to work from home.

Pain management

Pain is one of the best predictors of fatigue. Therefore, any management of pain is also likely to improve fatigue. You may discuss pain medication with your healthcare providers. In addition, there are a number of psychological interventions which have shown to be effective in managing pain including meditation, Mindfulness-Based Stress Reduction, Cognitive Behavioural Therapy, Acceptance and Commitment Therapy. Pacing is also an effective way to manage pain.

Lifestyle management

Lifestyle management including addressing things like diet, exercise, and sleep.

Diet.There are no known diets that cure or treat fatigue in SpA. Most individuals have to experiment (i.e., “trial and error”) to figure out if certain foods impact their fatigue. Several weeks of a consistent diet is often required to see any pattern. In other words, checking to see if a food impact your fatigue does not mean eating it or not eating it for a few days to see its effect. It may require several weeks to observe its impact.

Exercise. Consistent exercise such as walking or swimming may help manage fatigue. Many individuals also report that fatigue interferes with their ability to exercise so they may struggle to use this as an intervention for fatigue. Finding the right type of exercise and amount/intensity of exercise will be different for each person.

Routine. Having a consistent routine can help manage fatigue. Things like getting out of bed and going to bed regular times, eating at similar times each day, exercising at the same time of day (e.g., morning vs evening) can help even out fatigue. “Eating by the clock” means to eat at scheduled times of day rather than when you are hungry in order to maintain consistent energy levels in your body. If you keep your routine consistent, you will also be able to see if there are typical times of day when your energy levels are higher or lower.

Sleep. Research studies find that over 50% of individuals with SpA have a sleep disorder that impacts fatigue (18, 19, 20). You can ask your physician about medications to help with sleep. You can also improve your sleep by addressing your sleep routine (also known as “sleep hygiene). This involves things like having a consistent time to go to bed and to wake up, taking electronics out of the bedroom (including smart phones), having a “wind down” routine to settle into sleep at the end of the night, and avoiding consuming drinking that have caffeine, especially past lunchtime. It’s important to note that we don’t have direct control over our sleep. Most of us know that we don’t have the ability to “will” ourselves to sleep. Sleep routine is the part that we can more control over and which has been shown to impact sleep. The easiest way to stick to a sleep schedule is to get up at the same time of day every (e.g., setting an alarm), rather than expecting to be tired at a certain time of night. Adjusting to a sleep routine may involve several days of feeling ever worse as you try to get up at a consistent time. But changing the time of day you go to sleep and you wake up is like giving yourself jetlag every day.

Medications

Anti-TNF agents appear to reduce fatigue in most patients.Despite improvements of fatigue on Anti-TFN agents, studies show that significant residual fatigue remains indicating it is not a cure for fatigue. Amitriptyline is a medication that treats depression, pain, and insomnia and is often prescribed for fatigue management in SpA.Some individuals also find that their pain medication can contribute to feelings of fatigue and they may need to work with their physicians to find the right dosage.

Psychological interventions

Current guidelines from the National Institute for Health and Care Excellence (NICE) recommend psychological interventions to help in the management of SpA (25). Studies show that psychological interventions are effective in the treatment of many of the comorbidities of SpA including depression, anxiety, pain, sleep, and stress. There are also psychological interventions designed to help individuals cope with their chronic disease.

Written by Dr. Dayna Lee-Baggley, Psychologist

Peer to Peer

We solicited feedback from other patients who have experienced Fatigue who have shared some advice based on personal experience.