Fatigue in Sjogren's Syndrome

Fatigue is one of the most difficult symptoms in Sjögren`s syndrome (SS) to manage. It is also one of the most common symptoms reported in SS, but what leads to that fatigue is not fully understood. 

A U.K. study found that factors that associated with high levels of fatigue among patients with Sjogren's syndrome included pain, depression, and - unexpectedly - low levels of two proinflammatory cytokines. Proinflammatory cytokines are cytokines that promote systemic inflammation.

"This suggests that measures of disease activity in primary Sjogren's syndrome appear to be less important than cytokines, depression, and pain in accurately predicting fatigue levels," the researchers observed.

Conclusions: Cytokines, pain and depression appear to be the most powerful predictors of fatigue in Sjogren's Syndrome. 

 The research data challenged the idea that proinflammatory cytokines directly cause fatigue in chronic immune conditions. "Instead, we hypothesise that mechanisms regulating inflammatory responses may be important." 

Fatigue in primary Sjogren's syndrome is associated with lower levels of proinflammatory cytokines. Published in BMJ Journals on 19 July 2016

Fatigue and Sjogren's Syndrome Frequently Asked Questions

What does Sjogren's fatigue feel like?

Think about the last time you had a really bad flu and your muscles felt weak and you could not even lift your head up off the pillow. That is how Sjogren's fatigue feels but it does not go away.

Many people with Sjogren's have tried to describe their fatigue because it is much more than normal tiredness and it cannot be cured by a good night's sleep. 

In 2021 the Sjogren's Association in Europe created an awareness campaign about fatigue which they say is one of the most prevalent and disabling patient reported symptom of Sjögren’s. It is called 15 types of sjögren's fatigue. The core of the campaign is to express and raise awareness about patients' fatigue and the different ways it manifests itself. It provides words and shareable images about these types of fatigue in many languages. Here are some examples of 2 different types of Sjogren's fatigue: 

2. Rebound fatigue

If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.

3. Sudden fatigue

This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what to look for, even though I make gargantuan efforts to disguise the fact that it is happening.

See the full campaign with all the information about the 15 types of fatigue here.

How is fatigue treated in patients with Sjogren's syndrome?

The unknown cause of fatigue in Sjogren's syndrome makes it difficult to determine a specific treatment for the symptoms. Synthetic or biological drugs have so far failed to show significant efficacy in improving fatigue. The role of HCQ remains unclear; RTX is questionable; LEF, zidovudine, bortezomib, TGP, belimumab, epratuzumab, abatacept, etanercept, and anakinra require further research. Other treatments such as dehydroepiandrosterone, gamma-linolenic acid, doxycycline, and infliximab are not effective based on available data. - 2019 research article 'Managing fatigue in patients with primary Sjögren’s syndrome: challenges and solutions.'

Hydroxychloroquine  is HCQ.

Rituximab is RTX

Leflunomide is LEF.

Total glucosides of peony is TGP

The article goes on to say that aerobic exercise seems to be an effective and safe treatment suggestion and that sleep issues such as sleep apnea should be addressed.

How can I rate my fatigue?

You could use the Fatigue Severity Scale (FSS) which is a rating scale used by doctors. It was designed to differentiate fatigue from clinical depression since both share some of

the same symptoms. The FSS is a short questionnaire that helps you record your own level of fatigue. You could use it each month to rate your fatigue and it would be helpful to show your rheumatologist, on your next appointment, if fatigue is one of your symptoms. Get a copy in PDF form here. 

Find out more about fatigue in Sjogren's syndrome here.

A summary of 2021 research into Sjogren's fatigue can be read here