Adapted from a presentation to the HSS Myositis Support Group by
Fatigue is a common complaint by people with myositis, with the majority of people with myositis affected. Dr. Berman stated that fatigue can often feel like the “flu,” with a feeling of continued exhaustion. Other ways people experience fatigue include:
- Sustained feeling of exhaustion with a decreased ability for mental and physical activity
- Entire-body tiredness that seems out of proportion with one’s activity level and lasts for more than one month
Possible Causes of Fatigue
We often say, “We are not our disease.” This is especially relevant, as Dr. Berman said that it is important to understand that one’s fatigue may not always be related to myositis. Other possible medical factors need to be considered. These include:
- Inflammation, which can be indicated by:
- Elevated sedimentation rate or C-reactive protein (CRP), both of which measure inflammation levels
- High creatine phosphokinase (CPK) levels, which measures the degree of muscle damage caused by myositis)
- Thyroid problems
- Insomnia (sleeplessness), which may be caused by pain or steroid medications (especially if they are taken later in the day)
- Medication side effects
- Depression, anxiety or other mood disorders
- Sleep apnea
- Low vitamin D levels
- Overdoing it (It is common to do too much when you are feeling better. Doing too much can cause fatigue even in people who do not have a chronic illness. It is important to modify tasks that are manageable for you and can leave you less worn out.)
Certain medications, such as those listed here may also contribute to fatigue (but you should not change any medication regimen before you discuss it with your doctor):
- Cold and allergy medications that contain antihistamines such as diphenhydramine (Benadryl)
- Muscle relaxants such as cyclobenzaprine (Flexeril) or metaxalone (Skelaxin)
- Some blood pressure medications (beta-blockers: Toprol, atenolol)
- Pain medications:
- Opioids such as oxycodone (Percocet), hydrocodone (Vicodin) or tramadol
- Pregabalin (Lyrica), gabapentin (Neurontin)
- Antidepressants such as fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), amitriptyline (Elavil) or duloxetine (Cymbalta)
Although it is an under-researched area, Dr. Berman provided some studies about fatigue and how it affects patients with myositis:
- Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group1
- This was established to examine patient-reported outcome measures.
- Initial focus group consisted of 6 women and 1 man with dermatomyositis and polymyositis, ranging in age from 33 to 69 years (mean age = 45)
- Disease duration from 2 to 24 years
- Patient global assessment, pain, fatigue, and stiffness were recorded on a 100mm visual analog scale (VAS)
- The mean (average) scores were: 35.7 for patient global assessment; 15.4 for pain; 54.6 for fatigue; and 40.9 for stiffness
The following studies and outcomes were related to fatigue in general:
- Vitamin D and Fatigue
- Patients who received 50,000 IU supplementation per week for 24 weeks improved their fatigue scores.
- This included improved scores for: fatigue easily; fatigue during exercise; fatigue to medium efforts; and fatigue considered a problem.
- A study on fish oil and fatigue showed that fish oil helped with fatigue.2
The assessment and management of fatigue in myositis patients is often neglected. Dr. Berman stated that this needs to be addressed more. Doctors can ask certain questions that might help in understanding the causes of your fatigue:
- How often do you feel fatigued?
- What are your daily activities?
- What do you think are the causes?
- How does this affect your daily life?
- How do you manage this?
- Do you ask for help from others?
For example, s/he can look for other factors, as described above, that may increase fatigue. It may be that certain changes in medication are contributing. If so, your doctor and you can discuss the risk vs. benefit of the medication(s). Another possibility is that your doctor may consider adding certain medications that add energy in the daytime or prescribe a sleep medication to help you sleep better at night so you have more energy during the day.
As for what you may be able to do to help with fatigue, Dr. Berman offered some suggestions.
- When you make your “to do” list, cross off at least one third of the least important tasks; make this realistic and manageable for you.
- Think about having your laundry sent out.
- Under the guidance of your doctor or physical therapist, exercise to help increase muscle and strength. Exercise also releases endorphins that may decrease pain and increase energy.
- Use a shopping cart to transport your groceries. If possible, have food delivered. You may also think about freezing foods so that cooking time can be lessened.
Tip: one group member suggested using a slow cooker to be able to make meals in greater volume and then freeze them.
- Eating a proper, well-balanced diet is an important factor in trying to increase energy and decrease fatigue.
However, it is also important to consider your personal dietary needs. For example, you may have difficulty swallowing and food needs to be soft or pureed. To help with this, Dr. Berman suggested speaking with your doctor about consulting a nutritionist to develop a diet appropriate for you.
- Sleep! This is one of the key factors in helping with fatigue. Follow your body’s clues for rest. If possible, take naps without guilt!
Develop a sleep routine that works for you. For some, this may mean going to bed at the same time each night, no TV or light from electronic devices, and reduce noise.
- Cognitive behavior therapy: This is a form of therapy that can help change and redirect your thoughts about fatigue. Dr. Berman noted that randomized trials have shown this to work.
Managing Fatigue in the Workplace
Many people choose not to disclose their medical condition/s to their employers.
However, if you have done so and feel comfortable, here are some things to consider are:
- Take frequent breaks to stretch or walk.
- Eat frequent, nutritious snacks.
- Adapt work stations with adjustable desks or ergonomic chairs.
- Explore the possibility of working from home part of the week, and/or adjust your daily work schedule (for example, start and end your workday later.
Dr. Berman then offered strategies to try to master your fatigue:
- Acknowledge that fatigue exists and that it is difficult to control and predict.
- Accept that others will not easily understand your fatigue.
- Be kind to yourself if you need to rest or take time off.
- Try to find a balance.
- Learn to accept compromises.
- Accept that it is important to let your doctor know how fatigue is affecting your life and discuss what can be done.
What you can do:
- Recognize and adapt to fatigue in your life.
- Work with your doctor to help identify what may be causing your fatigue.
- Recognize that fatigue is not laziness. It is a symptom that needs to be treated, so be kind to yourself.
What your doctors can do:
- Improve on ways to assess and measure patients’ fatigue.
- Collect more information about fatigue, so that better treatment strategies can be developed.
- Ask patients about their fatigue.
Learn more about the HSS Myositis Support Group, a free support and education group, held monthly for people with myositis and their family and friends.
Summary by Suzan Fischbein, LCSW, Senior Social Work Coordinator I.
1 Alexanderson et al. J Rheumatol. 2014 Mar;41(3):581-92.
2 Arriens et al. Nutr J 2015 Aug 18; 14:82.