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Fatigue affects an estimated 80% of all sarcoidosis patients, even when other symptoms are well controlled. For some, this symptom can be persistent and disabling, affecting their quality of life and ability to complete daily functions.

If you suffer from fatigue, you are not alone. Some sarcoidosis patients are so debilitated by it that they are unable to work. Others are underemployed or feel unable to do activities they used to enjoy because of their symptoms. To make things worse, many patients are not taken seriously by family, friends, and healthcare providers because they appear to be healthy. FSR recognizes this to be a huge barrier to wellness that needs to be recognized and treated with the same compassion given to those who are battling visible illnesses.

Luckily, this is an area of sarcoidosis which has been studied more thoroughly in recent years and there are steps you and your doctors can take to investigate and treat the symptoms.

There are a couple considerations your doctor will take into account when assessing your fatigue:

  1. Is your disease currently under control?

Patients who have active inflammation and associated organ dysfunction are likely to experience fatigue. This may result both from their disease and as a side effect to common treatments. Corticosteroids, for example, are a first line therapy for sarcoidosis whose side effects include weight gain, diabetes, and sleep apnea that can worsen fatigue.

If your disease is not under control, it is important to first work with your doctor(s) to determine the best course of treatment to address the inflammation in your body. If you have just been diagnosed with sarcoidosis, you may benefit from finding a physician with familiarity with sarcoidosis in our searchable provider directory. We also suggest that you review the Sarcoidosis Treatment Protocol with your doctors if you feel that your disease is not well controlled or if you are experiencing unbearable side effects from current therapies.

  1. Is there another underlying condition that could explain your fatigue?

There are many other conditions which can cause fatigue, many of which are common in sarcoidosis patients, including:

  • Diabetes
  • Sleep Apnea
  • Depression
  • Anxiety
  • Thyroid Dysfunction
  • Anemia
  • Lifestyle factors (e.g. use of alcohol or drugs, lack or excess of physical activity, poor sleep, some medications, poor eating habits)

If your doctor determines that a coexisting condition such as diabetes is the cause of your fatigue, treatment for that disease may begin to alleviate your symptoms.

Still experiencing fatigue?

If your doctor rules out other causes, it is likely that you are suffering from sarcoidosis-associated fatigue. Lifestyle changes such as improved diet, good sleep habits, weight reduction, and exercise have been shown to improve these symptoms in sarcoidosis patients. In addition to lifestyle changes, your doctor may consider prescribing a neurostimulant to help you overcome persistent fatigue.

The FSR Sarcoidosis Treatment Protocol may help your physician develop the best treatment plan for these symptoms. We also encourage you to learn about lifestyle changes you can consider to improve symptoms with our tips for self-care.

Fatigue is hard to measure!

While your doctor may evaluate your fatigue by asking questions and referring to the Fatigue Assessment Scale (FAS), there are no tests by which they can measure how much fatigue you experience. Because there are no hard and fast measurements, many people trivialize the impact that such symptoms have on an individual’s quality of life.

The Foundation for Sarcoidosis Research is working to educate researchers, physicians, and the public about devastating effects of sarcoidosis on daily life. You can help us educate them and speed up research by sharing how sarcoidosis has affected your quality of life. Join the FSR Patient Registry today.

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