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General complaints

Some of the symptoms that occur in sarcoidosis do not seem to be directly related to the location of the granulomas. The reason for this is not known.

By far the most prevalent complaint is fatigue, but joint pain, muscle pain, weight loss, dizziness, calcium imbalance, concentration problems, memory loss, fever, and sleep disturbance or sleep disorders such as sleep apnea are also common.

‘Everyone is tired from time to time’

Most people will not immediately visit a doctor when they have fatigue symptoms. Their fatigue is usually temporary and that happens to everybody at some point. It can be caused by, for example, a viral infection, stress or an excessive workload.

The fatigue associated with sarcoidosis, however, is of a completely different order. Yet this problem is still greatly underestimated and more often than not the standard response is:  ‘Everyone is tired sometimes’ or ‘It’s all in your head’.

The fatigue that occurs in sarcoidosis is called sarcoidosis-associated fatigue. Sarcoidosis-associated fatigue, for most sarcoidosis patients, is an exhausting fatigue that can persist for years, even when there is no more disease activity.

So the temporary, transient fatigue that everyone knows after a busy period or the flu is not comparable to sarcoidosis-associated fatigue. Sarcoidosis-associated fatigue can last for years and affect daily life enormously. Moreover, sarcoidosis-associated fatigue can take extreme forms and can also persist even while the other signs of disease activity have disappeared. Thus, the prognosis remains uncertain even if inflammation is no longer active. It also appears to be unrelated to the location of the sarcoidosis.

Sarcoidosis-associated fatigue occurs in 30-90% of people with sarcoidosis, making it the most common complaint in sarcoidosis. For many patients, it is also the first complaint they experience, sometimes well before they see a doctor. Sarcoidosis-associated fatigue does not differentiate between gender, age, medication usage, or the location of sarcoidosis in the body. Sarcoidosis-associated fatigue can lead to significant activity disturbances and result in a decrease in exercise tolerance. Recovery from exercise can also take a very long time. Fatigue may be accompanied by an increase in sleep requirement, however there are also many sarcoidosis patients who, despite the fatigue, actually sleep less than before.

Information leaflet on fatigue (Dutch) 

Cause of fatigue

There is still much uncertainty about both the cause and the appropriate treatment of sarcoidosis-associated fatigue.

During the phase of active disease, sarcoidosis-associated fatigue is explained by the body’s immune response. During the phase of active disease, sarcoidosis fatigue is explained by the body’s immune response. This process releases a variety of substances in the immune system (mainly messenger proteins called cytokines) that lead to fatigue.

When the disease is less active or no longer active, it is difficult to pinpoint a clear cause for the fatigue. In a study of post-sarcoidosis chronic fatigue syndrome, it was shown that the immune system of fatigued patients works differently than that of patients who did not suffer from this syndrome.

There is also evidence that the pain processing system and the stress hormone system work differently. It is unclear whether this has come about because of the disease or whether this was the case before the disease was diagnosed. To better understand fatigue during and after sarcoidosis, more research is needed.

One of the causes of fatigue may be a sleep disorder. A specific sleep disorder, obstructive sleep apnea syndrome (OSAS, often called sleep apnea for short) is significantly more common in sarcoidosis than in healthy people. People with sleep apnea have unconscious respiratory stops and/or breathing interruptions during sleep, which prevents them from sleeping through the night.

Treatment of fatigue

To date, no effective treatment of sarcoidosis fatigue is known. Insufficient data are available on whether or not the usual medications can exert a beneficial effect on fatigue.

Corticosteroids are known to have a stimulating effect, but a negative effect on the muscles may also result. In the latter case, fatigue may actually increase. Whether newer therapeutic options, such as anti-TNF-alpha drugs, will be able to produce a beneficial effect on fatigue remains to be seen.

Studies in Crohn’s disease have shown that anti-TNF-alpha drugs may have a beneficial effect on fatigue. In addition to medication, physical therapy may also offer a solution. Unfortunately, there is no specific exercise program for sarcoidosis.

Finally, fatigued sarcoidosis patients might also benefit from cognitive behavioral therapy and mindfulness training. In chronic fatigue syndrome, both of these forms of therapy have been shown to be effective.

In addition to all of these options, counseling and support for the sarcoidosis patient at this time are of great importance to minimize the adverse impact of fatigue on family and socio-professional relationships.

Types of fatigue

  • Fatigue in the early morning
    The patient is barely able to get up or gets up with the feeling of not being adequately rested and having slept poorly. This type of fatigue is seen in people with autoimmune disorders and may be due to muscle and/or joint problems that lead to these starting problems, or to sleep disorders.
  • Sleep fatigue
    Sleep apnea in sarcoidosis may be caused by the disease itself (including upper respiratory tract infiltration) or a result of corticosteroid treatment. Corticosteroids can cause weight gain and muscle breakdown as side effects. The muscle breakdown can occur, for example, in the muscles of the larynx and respiratory muscles. The weight gain and decreased function of the larynx muscles may be a factor in the development of sleep apnea. Reduced strength of the respiratory muscles is also related to fatigue symptoms.
  • Intermittent fatigue
    The patient wakes up fit but feels tired and exhausted after a few active hours. After a short rest period, the patient is then able to perform a variety of activities again but within a short time, another period of fatigue will follow. In this case, it is very important that the patient learns to manage effort and to alternate periods of activity with rest.
  • Afternoon fatigue
    In the morning the patient wakes up with sufficient energy, in the afternoon he/she is completely burnt out. This fatigue is sometimes compared to a flu-like clinical picture. The feeling of being completely exhausted is a huge obstacle for these individuals. Ideally, they would like to rest and go to bed. Eventually, if possible, they go to bed early.
  • Postsarcoidosis chronic fatigue syndrome
    This syndrome occurs in patients who have clinically recovered from the experienced, active form of sarcoidosis. The symptoms that may accompany this syndrome are extensive muscle pain, crippling fatigue and depressive symptoms.

Impact of sarcoidosis-associated fatigue

Quality of life

Several Dutch studies of quality of life in sarcoidosis included recording the presence of fatigue using international questionnaires (KSQ, WHOQOL-100 and SF-36). Fatigue was found to have a high correlation with quality of life. This pertains to both the social and societal consequences for people with sarcoidosis.

Social consequences

It is tremendously difficult for the patient that no objective evidence or cause can be found for the sarcoidosis-associate fatigue, whereas these symptoms have so much impact. On top of that, the fatigue is often not visible. This can cause problems in relationships. Their family and friends do not recognize that the patient still has symptoms associated with the disease. It is often not accepted that someone is simply not able to do something.

The sarcoidosis-associated fatigue can also cause many additional symptoms such as difficulty concentrating, pain in muscles and joints and headaches. Unfortunately, these symptoms can also fit with the sarcoidosis itself. This makes it difficult to determine where it comes from.

Societal consequences

In addition, problems can arise when the sarcoidosis patient cannot (yet) or cannot fully participate in the work process. The objective parameters that company doctors require with regard to disease activity and fatigue are unfortunately lacking. The patient’s employability can therefore not be assessed objectively.

In more than 90% of sarcoidosis patients, the lungs are involved. This leads to symptoms such as chronic coughing, chest pain and shortness of breath, especially on exertion.

In 50-80% of people with sarcoidosis there are granulomas in the liver, usually this does not cause any symptoms, in rare cases there may be pain or jaundice.

Eye involvement occurs in 25-63% of people with sarcoidosis. Complaints may include: burning, itching, tears, pain, red eyes, hypersensitivity to light, dryness, black spots or blurred vision. Chronic inflammation of the iris can lead to cataracts, glaucoma and even blindness.

Because there is almost no organ in which sarcoidosis has not been described, there are many other specific complaints.

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