Living with fatigue

Living with fatigue

Chronic fatigue can be a major problem for people with RA. In addition to the fatigue itself, many people with RA find it difficult to explain to others around them how they feel. Although research does not yet have a cure, it has found clues as to why people with RA are affected.

Fatigue and chronic fatigue

Fatigue can affect people with rheumatic diseases including rheumatoid arthritis (RA). Fatigue had a real effect on your quality of life. It may be necessary to change your everyday routines and prioritize in order to be able to work or perform a particular activity. It can be a daily challenge to find a working pace, or find space to relax and recover. The general ability to function is reduced, which affects everyday life in general. The experience of fatigue can be described as "driving with the parking brake on".

Many people with chronic fatigue find it difficult to describe the feeling of their fatigue to people around them, as it differs from normal fatigue. (2.3).

There is as yet only limited treatment for fatigue, but a lot of research is being done. There are also strategies that people with have RA can use to facilitate everyday life.

Use the spoon theory to explain your everyday life

One of the challenges of living with fatigue can be explaining to those around you how it feels. The Spoon Theory is a method you can use. It's a way to be able to explain to people around you how it feels. Here, spoons are more than just cutlery: they represent your energy.

The Spoon Theory was created by Christine Miserandino when a friend of hers asked what it was like to live with the SLE, an autoimmune disease similar to RA. The spoon theory describes how you have a certain number of spoons of energy for the day, say twelve. Spoon after spoon disappears when you do something that consumes energy, such as showering, cooking or going to work. Going to work may take three spoons, as could shopping for food or going out to dinner with friends. Consumption may vary. On a day with a lot of pain, it could take a spoon just to brush your hair. Ideally, you should end the day with at least one spoon in reserve. If necessary, you can "borrow" spoons from the next day. Just remember that if you do, you will have fewer spoons the next day and may need to reduce your activity that day.

Whether you think of your energy as a spoon, a handful of batteries, lit and extinguished light bulbs or a bank account, this theory translates your ability into a concrete symbol you can rely upon. Maybe it could be a valuable tool to help you manage and sort your energy throughout the day. It can also be a great help in dealing with your own feelings, saying no to things or explaining to others. (5)

Living with fatigue

Unpredictability can be a worry for people with RA. This is stated in a new study that compiled the results of eight scientific articles published over the last 15 years. A total of 212 people between the ages of 20 and 83 were examined, 69 percent of whom were women. The study found that people with RA often experience fatigue as a vicious circle. It is difficult to plan, prioritize and rest and to explain to others that this fatigue differs from "ordinary" fatigue. The study describes that people can have a feeling of being alone with their symptoms (3).

Increased cytokines in spinal fluid

Research shows that it is not only the inflamed joints that affect the nervous system, but that there are probably more mechanisms behind fatigue. A research study from the Karolinska Institutet found that inflammation in the joints is associated with increased levels of so-called cytokines in the central nervous system. Cytokines are an inflammation molecule and there is a connection that shows that more cytokines also mean an increased feeling of illness, fever and a greater need for sleep. It is an important piece of the puzzle to be able to continue research on the causes and treatment of RA and chronic fatigue (1).

Physical activity and fatigue

There is no medication for fatigue yet. However, research is being conducted to investigate whether physical activity can help people with fatigue. One study used pedometers and exercise diaries. All test groups in the study experienced a reduction in fatigue level, increased physical function and self-reported decreased disease activity (4). As you may have read in our previous posts on physical activity, it gives us many health benefits. Why not test how physical activity makes you feel if you experience a lot of fatigue? Do something that makes you feel good, take a walk in the fresh air if possible, listen to the birds, music or an audiobook. Take the bike around the block. Lower the requirements, focus on what you CAN do and try your best!

References:

  1. J Lampa et al.,. (2012) Peripheral inflammatory disease associated with centrally activated IL-1 system in humans and mice, PNAS, DOI: 10.1073/PNAS.1118748109

  2. Pollard, L.C., Choy, E.H., Gonzalez, J., Khoshaba, B. & Scott, D.L. (2006). Fatigue in rheumatoid arthritis reflects pain, not disease activity. Rheumatology, 45, ss. 885–889

  3. Primdahl, J., Hegelund,  A., Lorenzen, A., Loeppenthin K., Dures, E6 & Appel Esbensen, B. (2019) The Experience of people with rheumatoid arthritis living with fatigue: a qualitative metasynthesis.

  4. Katz, P. , Margaretten, M. , Gregorich, S. and Trupin, L. (2018), Physical Activity to Reduce Fatigue in Rheumatoid Arthritis: A Randomized Controlled Trial. Arthritis Care Res, 70: 1-10. doi:10.1002/acr.23230

  5. Thrivetalk (2018) Spoon Theory: Changing the Way we Look at Chronic Illness. Tillgänglig: https://www.thrivetalk.com/spoon-theory/ (2019-05-29)

Elsa is a CE marked medical device that is registered with the Swedish Medical Products Agency.

Elsa is currently being co-developed by designers, developers, researchers, healthcare providers and patients across Sweden. If you have any questions or feedback, please feel free to contact: hello@elsa.science 

Elsa is partly financed by SWELife, Vinnova.

Elsa Science AB
Västmannagatan 4
111 24 Stockholm

© 2020 Elsa Science AB