Chronic Fatigue Syndrome and Lupus
While Chronic Fatigue Syndrome is not an overlap disease of lupus, current research is revealing more and more similarities between both conditions and what may cause them.
- What causes CFS?
- What are the symptoms of CFS?
- How is CFS diagnosed and treated?
- In Conclusion
In 2015, the Institute of Medicine (IOM) published a report stating that somewhere between 800,000 and 2.5 million Americans suffer from Chronic Fatigue Syndrome (CFS) and that most of these individuals have been undiagnosed. The IOM’s report also noted that women are more prone to getting CFS than men and the average age for experiencing symptoms is 33. While it is mostly white individuals who are eventually diagnosed with CFS, CFS may actually be more prevalent in Hispanics, especially those from a lower socioeconomic background. It is interesting to note that these affected demographics are very similar to the demographics of lupus.
According to the Centers for Disease Control and Prevention (CDC), CFS, also known as myalgic encephalomyelitis, leaves individuals feeling exhausted both mentally and physically and as though they never get enough sleep. Any activity an individual experiencing CFS may perform results in overwhelming, debilitating fatigue – a symptom called post-exertional malaise (PEM). It can be a vicious circle trying to take care of oneself as those same activities that many of us take for granted like cooking, getting clean and dressed or even getting out of bed seem to exacerbate feeling ill. An individual with lupus may find that these symptoms sound familiar – they may experience the same feelings during a lupus flare as they mitigate feelings of extreme exhaustion and fatigue doing the most seemingly mundane of tasks. As you read on, you may notice more and more similarities between CFS and lupus.
What causes CFS?
The Office on Women’s Health (OWH) acknowledges that it is unclear as to what exactly causes CFS and because of this, it is also not preventable. Individuals who suffer from CFS often report feeling poorly after experiencing the flu or other viruses including Epstein Barr Virus (EBV), the virus that causes mononucleosis. Sometimes, individuals with CFS say they started feeling bad after stressful life experiences such as surgery or emotional duress.
Harvard Health interestingly points out that CFS is not always necessarily attributed to another illness or infection. Some individuals who have been tested after experiencing symptoms of CFS are shown to have various “abnormalities” of the brain including the pituitary gland and hypothalamus. Others have abnormalities of the autonomic nervous system such as rapid heart rate and low blood pressure after standing. Some individuals even have abnormal cells that are unable to efficiently produce and use energy.
Harvard Health also points out that there is growing evidence in the relationship between autoimmune disease and CFS. An individual who has CFS has an immune system working in overdrive for an extended period of time – the immune system basically is attacking itself much like it does with lupus.
Inflammation and autoimmunity may also play a key role in the onset of CFS. Researchers of a 2012 study published in the Journal of Affective Disorders discovered that individuals with CFS showed characteristics of low-grade inflammation including cell-mediated immunity (CMI). These individuals also showed increased levels of cytokines including interleukin-1 and interleukin-6, much like individuals with lupus. A 2018 study in the journal Autoimmunity Reviews supported these findings and also discusses that T cells and B cells – cells responsible for the regulation of immune response – play in CFS. Researchers of this study noted that changes to B cells that are “frequently found in autoimmune diseases including rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and primary Sjögren’s syndrome” are also found in individuals with CFS.
Gut health may not only play a role in lupus, but may also offer clues as to why an individual will develop CFS as well. Researchers of a 2017 study published in the journal Microbiome discovered that individuals with CFS present a very distinctive gut bacteria profile. The worse the gut bacteria “disturbance” and imbalance, the more severely an individual may experience the symptoms of CFS. Researchers hope that the development of tools and standards that can test for disturbances in gut bacteria can someday provide an easy and swift diagnosis of CFS.
What are the symptoms of CFS?
Some common symptoms of CFS include:
- An unrelenting feeling of fatigue
- Deteriorating sleep quality
- Mental exhaustion and the inability to focus and concentrate
- Memory loss
- Inexplicable muscle and joint pain
- A persistent sore throat and/or swollen lymph nodes in the neck
- Severe exhaustion that lasts for a day or more after physical or even mental activity
- Feeling even more fatigued after standing or sitting up
- Dizziness, lightheadedness and feeling faint
- Heart palpitations and changes in blood pressure upon standing or sitting up
- Blurry or impaired vision upon standing or sitting up
- Food, chemical or medication sensitivities
It is important to see a healthcare practitioner right away if an individual is experiencing any of these symptoms for no clear reason or if an individual has been ill with something like a common virus, but the symptoms are persistent and lingering. If an individual has lupus, they may experience very similar symptoms much like during a lupus flare or the persistent fatigue that is often reported. While it may be too easy to take a symptom for granted, it is best to discuss any of these symptoms – whether new or persisting – with a healthcare practitioner.
How is CFS diagnosed and treated?
Unfortunately, because it is unknown what exactly causes CFS, there are no specific tools for diagnosis. In their 2015 report, however, the IOM suggested the following criteria for healthcare practitioners to following in attempting to diagnose CFS:
An individual must have the following three symptoms:
- A significant decrease in activity level (work/school life, social life, home life) for at least six months that also includes experiencing significant fatigue that is new, not the result of excessive exertion, and is not improved by rest and sleep.
- PEM that may last anywhere from several days to several weeks.
- Unrefreshing sleep that does not make an individual feel well rested even after a full night’s sleep.
In addition to these three symptoms, at least one of the following symptoms must also be present:
- Cognitive impairments such as feeling as if in a fog and unable to focus or concentrate, much like individuals with lupus experience. An individual may also experience problems with memory or processing information. This impaired cognitive function may be exacerbated by exertion even including remaining upright for an extended period of time.
- Orthostatic intolerance which include changes in heart rate and blood pressure upon standing or sitting upright and causes an individual to feel lightheaded, dizzy, faint, nauseas, or even unable to think clearly.
Even with this suggested criterion at hand, diagnosing CFS can still take time much like diagnosing lupus can take time even with the American College of Rheumatology’s criteria. The UK’s National Health Service (NHS) notes that a healthcare practitioner will often test for and rule out other illnesses in order to surmise than an individual is suffering from CFS – it can be a process of elimination similar to that of diagnosing lupus. While this can be extremely frustrating when an individual is tired of not feeling well and feeling apprehensive about the possibilities, it is really the only way a healthcare practitioner can diagnose CFS to date. This is also why it is extremely important for an individual to note every symptom they are feeling and clearly communicate this during their office visit – there is no such thing as sharing too much information where health and well-being are concerned. Being honest and communicative may ultimately help hasten the process of diagnosis.
Because the diagnosis process is somewhat ambiguous and may require a litany of tests to rule out other illnesses first, the National Institute for Health Care and Excellence (NICE) suggests asking the following questions during a healthcare visit if an individual thinks they may have CFS in order to help alleviate confusion and anxiety:
- What will I be tested for specifically?
- How will the testing be done?
- Where will the tests be taken? Can I take any of them at home?
- How long will it take to get the results?
- Once the results are in, how will I be notified?
An individual should not be afraid to be prepared and ask as many questions as they need to put their mind at ease – a good healthcare practitioner should be patient, compassionate and listen.
While there are no specific treatments for CFS to treat it holistically, a healthcare practitioner will work to treat an individual’s unique symptoms. It should be a team-effort between the individual and their practitioner to decide which symptoms are most severe and debilitating and treat those first.
According to the CDC, treatment may include:
- Activity management for PEM: Bed-rest may be prescribed during a PEM flare or for extreme exhaustion. An individual may be instructed to limit physical activity and then slowly reintroduce exercise, etc., back into daily routines slowly as symptoms improve.
- Sleep management: This may include changing sleep habits to encourage more restful, rehabilitative sleep or even the introduction of medicine to hasten and sustain sleep. Rest is healing and is key to treating CFS.
- Pain management: Heat, stretching and toning exercises or even complementary therapies such as massage and acupuncture may be recommended ways for easing discomfort. NSAIDs may also be prescribed to manage pain and soreness.
- Anxiety, depression and/or stress management: A healthcare practitioner may recommend seeing a therapist for cognitive behavioral therapy (CBT) in order to cope with the mental strain being ill may cause. CBT may be prescribed in tandem with antidepressants and/or anti-anxiety medications. Once again, complementary therapies such as yoga or tai chi may be recommended as ways to cope.
A healthcare practitioner may suggest making dietary changes that support overall good health as a way to treat CFS. They may also prescribe various medications to treat cardiovascular or other symptoms. A treatment plan will be carefully carved-out specifically for the individual experiencing their own unique CFS symptoms much like it is when individuals are diagnosed with lupus. No two individuals experience either illness exactly alike.
The Mayo Clinical also emphasizes the importance of mental health care when coping with any chronic illness. While CFS can eventually go away, it can often take quite a while and similar to lupus, flares (PEM) may occur from time to time before an effective and appropriate treatment plan is determined. Working with a good therapist and surrounding oneself with a strong support system of caring friends and family can go a long way in supporting emotional health and well-being when dealing with illnesses such CFS and lupus.
Developing good self-care and stress management practices such as meditation, deep breathing and relaxation therapy can also bring emotional and often physical relief. Some that are often not considered include:
- Minimize your social isolation: In times of pain and fatigue, it can be tempting to keep to yourself and avoid social interactions. Yet, if your fatigue allows it, stay socially active, keep friendships strong by staying in touch, and – within reason – interact as much as you can with others in normal social situations. It can be as easy as asking a friend (or several!) to go for a walk, or go to the movies, or even stay home and play a board game or binge some television. It does not take much to maintain a level of sociability, and that can have definite, positive effects on your attitude and sense of fatigue.
- Pace yourself: While exercising and keeping your social life active has many benefits, do not overdue it. Even if you give yourself plenty of sleep, your time awake can drain you of energy and actually set you back to the point where not just fatigue, but pain and depression can worsen. One of the best ways to pace yourself and to not overexert is to think of your physical and emotional energy in metaphorical terms. One of the most common and useful is the Spoon Theory! Each day, mentally visualize how much energy you have for the day in terms of “spoons.” Then, imagine how many spoons it takes to complete each activity. As you go through the day, be aware of how quickly you use up your spoons and make sure you use them wisely. If you run out of spoons, you will need to rest and recharge to get more of them back, and if you use too many, you may not have enough to get through the next day. Spoon theory is a helpful way of not only rationing your energy each day, but to explain to others how your fatigue is affecting you.
As noted throughout this article, there are threads of similarities woven between CFS and lupus. Both affect mostly women of childbearing age and possibly more women of color. The autoimmune system may be implicated in CFS as well as inflammation and gut health … much as they are with lupus. Both share common symptoms such as mysterious muscle and joint pain, extreme fatigue and even cognitive issues such as brain fog and the inability to think clearly and concentrate. Much like with lupus, an individual with CFS may also look perfectly healthy. They may seem healthy, active and strong. It is important to remember that looks can be deceiving, however, and much like when an individual has lupus; the symptoms and effects of CFS can be internally debilitating and destructive to the individual who is suffering.
While the origins and causes of CFS can be somewhat of a mystery, they can manifest into a very real illness, much like lupus. Gone unrecognized, CFS can be as similarly incapacitating as lupus can be during a flare – these two conditions can share very common symptoms. No matter what the eventual diagnosis may be, acknowledging when one has not felt good for a long period of time, not taking appearances or feelings for granted, recognizing symptoms and being an active and engaged participant in one’s own healthcare can be some of the best treatment options for CFS, lupus or virtually any chronic illness.
Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. (2015). Retrieved from: http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
Chronic fatigue syndrome. (n.d.). Retrieved from: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Chronic fatigue syndrome. (2018). Retrieved from:
Chronic fatigue syndrome. (2019). Retrieved from: https://www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome
Diagnosis. (n.d.). Retrieved from: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/diagnosis/
IOM 2015 diagnostic criteria. (2018). Retrieved from: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html
McDonald, F. (2017). Another study just linked chronic fatigue syndrome to gut bacteria. Retrieved from: https://www.sciencealert.com/another-study-just-linked-chronic-fatigue-syndrome-to-gut-bacteria
Maes, M., Twisk, F., Kubera, M., & Ringel K. (2012). Evidence for inflammation and activation of cell-mediated immunity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): Increased interleukin-1, tumor necrosis factor-cx, PMN-elastase, lysozyme and neopterin. Journal of Affective Disorders, 136, 933-939. doi:10.1016/j.jad.2011.09.004.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (2015). Retrieved from: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf
Nagy-Szakal, D., Williams, B., Mishra, N., Che X., Lee, B., Bateman, L., … Lipkin, W. (2017). Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome. Microbiome. Retrieved from: https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y
Sotzny, F., Blanco, J., Capelli, E., Castro-Marrero, J., Steiner, S., Murovska, M., & Scheibenbogen, C. (2018). Myalgic encephalomyelitis/chronic fatigue syndrome – Evidence for an autoimmune disease. Autoimmunity Reviews. Retrieved from: https://reader.elsevier.com/reader/sd/pii/S1568997218300880?token=DF1F2ED81FEC528342C8B343E4655EDDA2FC23346EECD5D0F5125F3F252AB758F6A110BE1EC705664B87C06D7F540515
Author: Liz Heintz
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.