What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS), is a debilitating and very complex disorder characterized by extreme fatigue. This type of fatigue is not improved by getting rest. It may be made worse by physical or mental activity and can limit your ability to complete ordinary daily activities. CFS can affect multiple systems in the body causing muscle pain or weakness, cognitive dysfunction (brain fog), and insomnia (the inability to sleep).
Those who suffer from lupus and other autoimmune diseases such as rheumatoid arthritis and fibromyalgia, just to name a few, are often chronically tired. This leaves many wondering, is it CFS or is it just fatigue? Hopefully this blog will help clarify the difference and how to speak with your physician about this very real and under-recognized medical condition.
What are the symptoms of CFS?
The main symptom of CFS is severe and debilitating fatigue that lasts for six months or more. According to the Mayo Clinic, CFS has eight other official symptoms in addition to the fatigue that gives it its name:
- Unexplained muscle pain
- Headaches that are different than those you have had in the past, in a new pattern, or with changing in severity
- Loss of memory or concentration
- Feeling unwell or extremely exhausted more than 24 hours after any physical or mental activity/exertion
- Joint pain that moves between joints without swelling or redness
- Sore throat
- Sleep problems (insomnia) or sleep that does not restore energy
- Swollen lymph nodes in the neck or armpits
Despite the fact that the symptoms listed above are the ones used to diagnose CFS, many of those suffering with chronic fatigue syndrome may experience other symptoms, including but not limited to:
- Cognitive dysfunction (brain fog): Trouble concentrating, remembering things, or feeling detached or fuzzy
- Balance problems: Difficulty staying in an upright position, dizziness, even fainting
- Allergies: This can also include sensitivities to foods, odors, chemicals, medications, or noise
- Irritable bowel or IBS: This can cause abdominal pain, bloating, discomfort, diarrhea
- Night sweats or unexplained chills
- Eye problems: This can include sensitivity to light, blurred vision or eye pain
- Chronic Cough
- Chest pain, shortness of breath, or irregular heartbeat
- Dry eyes or mouth
- Behavioral changes: This can present as depression, moodiness, anxiety, irritability, even panic attacks
Please speak to your health care professional if you’re experiencing any of these symptoms. It is possible that you have CFS, but you could also have another treatable disorder. Only a health care professional can diagnose CFS.
How is CFS diagnosed?
There is no single test for a CFS diagnosis but there are three criteria that need to be met before a diagnosis of CFS is made:
- Extreme and debilitating fatigue that lasts six months or more.
- At least four of the eight symptoms listed above. These symptoms should be ongoing or recurring during six or more consecutive months and cannot have first appeared before the fatigue began. If, however, the patient has been fatigued for 6 months or more but does not have four of the eight symptoms, the diagnosis may be ‘idiopathic fatigue’.
- The fatigue and symptoms are debilitating enough to interfere with daily activities or work.
CFS is very difficult to diagnose for a number of reasons:
- Fatigue and other symptoms of CFS are common to many illnesses.
- For some CFS patients, it may not be obvious to doctors that they are ill.
- The illness has a pattern of remission and relapse.
- Symptoms vary from person to person in type, number, and severity.
Because there is no blood test, brain scan, or other lab tests that can diagnose chronic fatigue syndrome, coupled with the fact that many other illnesses can cause similar symptoms, your physician will attempt to rule out other diagnoses before giving a diagnosis of CFS. Some of these other conditions may include:
- Sleep disorders:Chronic fatigue can be caused by sleep disorders. A sleep study can determine if your rest is being disturbed by disorders such as obstructive sleep apnea, restless legs syndrome, or insomnia.
- Various medical conditions:Fatigue can be a common symptom in several other medical conditions, such as infections, underactive thyroid (hypothyroidism), adrenal function issues, anemia, and diabetes. Lab tests might be ordered to check your blood for evidence of any other suspected conditions or if you have had any prior infections such as Epstein Barr, Lyme disease, chlamydia, or
- Nervous system disorders: Your physician may order a CT scan or an MRI of your brain to rule out any disorders of the nervous system that could be causing balance issues or cognitive dysfunction.
- Mental health issues: Depression, anxiety, bipolar disorder and/or schizophrenia can also cause extreme fatigue. Seeking the guidance of, and assessment by a mental health specialist such as a psychologist or counselor can help determine if one of these problems is the cause of your fatigue.
Because the symptoms of chronic fatigue syndrome mimic so many other health problems, CFS is very difficult to diagnose, and you may need to be patient while waiting for a diagnosis.
*As a general rule, please see your doctor if you have persistent or excessive fatigue.
No one knows what causes CFS. It may be triggered by stress, various illnesses or other medical conditions. CSF most commonly affects women in their 40’s and 50’s, with women being two to four times more likely than men to be diagnosed, but anyone can have it. There have been studies (with mixed findings) that have looked at determining whether changes to the immune system may lead to CFS. Many, but not all, patients have allergic diseases and secondary illnesses like sinusitis which may indicate one determining factor in the development of CFS. Many patients also report having food intolerances.
Treatment for chronic fatigue syndrome focuses on symptom relief, but because each individual experiences CFS in different ways, treatment protocol will vary from patient to patient. It is common that people with CFS are often sensitive to many medications, therefore, the physician will most likely begin with low doses and gradually increase or change the dose or medication depending on your response or side effects. All medications have the potential to cause side effects, so please monitor carefully anything out of the ordinary for you once you begin a new course of medication, and alert your physician of all changes.
Some medications that may be prescribed are:
- NSAIDS: Over-the-counter non-steroidal anti-inflammatory medication such as ibuprofen and naproxen can help with joint and muscle pain. Depending on the severity of symptoms, prescription pain medication may be indicated.
- Low-dose tricyclic antidepressants: CFS patients often deal with depression. By treating the depression, it can be easier to cope with the disease. Low-dose tricyclic antidepressants may be prescribed and can aid sleep and relieve mild generalized pain. Examples include: desipramine(Norpramin), amitriptyline (Elavil, Etrafon, Limbitrol, Triavil), dedoxepin (Adapin, Sinequan), and nortriptyline (Pamelor).
- Newer antidepressants: These newer antidepressants have been successfully used to treat patients with CFS. They include: fluoxetine(Prozac), sertraline (Zoloft), bupropion (Wellbutrin), paroxetine (Paxil), venlafaxine (Effexor), and trazodone(Desyrel).
- Anti-Anxiety medications: Aplrazolam (Xanax) and lorazepam (Ativan) are commonly used to treat anxiety in CFS patients.
- Stimulants: Lethargy or daytime sleepiness may be treated with stimulants.
- Sleeping aids: If lifestyle changes, such as avoiding caffeine, do not help a CFS patient get better sleep at night, a physician might suggest trying prescription sleep aids.
Stay in constant communication with your physician about how prescribed medications are working for you, or if you are experiencing any side effects. Your doctor may know of new treatments or may even be able to recommend alternative treatments including herbal supplements.
By working closely together, patients and their doctors can create an individualized treatment program that best meets the needs of the patient with CFS. Ideally, this program would include a combination of therapies that not only address symptoms, but provide coping techniques, and the skills to manage and maintain normal daily activities as tolerated by the patient’s changing disease activity levels.
Alternative treatment options:
The most effective treatment plan for CFS appears to be an approach that combines gentle exercise along with psychological counseling.
- Exercise: A physical therapist can provide an exercise routine that may be helpful with muscle and joint pain. At the beginning of treatment, some of the prescribed exercises may include a few minutes per day of gentle stretches to increase range-of-motion. The goal is to increase endurance and intensity of exercises over time. Learning how much activity is manageable and helpful is equally as important as learning your personal limits as not to increase the level of fatigue.
- Counseling: Speaking with a mental health professional can help you find options for coping with chronic fatigue syndrome. Having the tools to help you feel more in control can make a world of difference in your outlook.
Other therapies that might be investigated along with the traditional therapies are:
- Massage therapy
- Chiropractic therapy
- Therapeutic touch
- Herbal supplements
- Dietary changes
- Tai Chi
- Manage/reduce stress: Limit emotional stress and overexertion. Make time each day for relaxation and even meditation. Learn how to say ‘no’ and not feel guilty about it!
- Improve your sleep habits: This may mean that you need to go to bed at night and get out of bed in the morning at the same time each day to get your body on a schedule. Try to limit caffeine intake, alcohol and nicotine use, and avoid, if possible, napping during the day.
- Pace yourself: Have you heard of the spoon theory? It is about managing your expectations of what you will be able to accomplish each day. If you do too much on a given day, you may have less energy and stamina for the following day.
- Try to minimize social isolation: Without sacrificing your health or taxing your body further, positive social interaction can be very important to your well-being. Try to make and keep plans with friends and loved ones, even if it involves just staying in and watching a movie together!
*Please speak with your treating physician(s) before beginning any supplements or alternative treatment plans. Some herbal supplements may have potentially serious side effects or interact negatively with prescribed medications you are already taking.
Living with CFS
Living with chronic fatigue syndrome can be difficult. Like other debilitating chronic illnesses such as lupus and fibromyalgia, CFS can have a devastating effect on patients’ daily lives and require them to make major lifestyle changes and adapt to new limitations. CFS is complicated and may require the assistance and expertise of many different medical professionals to help with not only the physical manifestations of the disease, but the emotional ones as well. Patients will often benefit when they work in collaboration with a team of doctors and other health care professionals. These might include: rehabilitation specialists, mental health professionals, and physical or exercise therapists.
Some emotional/lifestyle complications of chronic fatigue syndrome can include:
- Restrictions in lifestyle: The decrease in stamina may prohibit the patient from performing daily tasks and activities causing changes in relationships with partners, children and other family members and friends.
- Inability to work: CFS can lead to more absences from work, a loss of independence, financial instability, and economic insecurity.
- Depression, anger, and guilt: Dealing with the unpredictability of the disease, changes in the ability to perform daily activities, and feeling socially misunderstood and isolated can lead to emotional distress. While it is completely normal to have these feelings, the stress that they can cause may worsen symptoms and make recovery more difficult.
The cycles of CFS
Like [lupus] and other chronic conditions, those with CFS will most likely experience periods of high disease activity and periods of no disease activity called remission. The severity and frequency of these cycles will vary. For some people, CFS does not affect the ability to accomplish tasks in daily life, but for most others there are periods where the disease is very active and can limit daily activities, affecting performance at school, work, and home.
These unpredictable cycles can be very frustrating and cause emotional distress. It is very common during the periods where the patient is feeling better to overdo things, trying to catch up on all the things they were unable to do when they were feeling un-well, sore and tired. This “catch-up” mindset can exhaust the patient, often causing a relapse. It is very important to learn how to pace yourself during these times of remission and to allow your body the rest it needs to recover.
While symptoms and severity vary from person to person, most all CFS patients are limited in what they can do to some degree. According to the Centes for Disease Control and Prevention (CDC), studies show that CFS can be as disabling as multiple sclerosis, lupus, [rheumatoid arthritis], heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.
Some people are able to continue to work at a flexible job that meets their needs. If you are diagnosed with CFS and are unable to work, you can apply for disability benefits through the Social Security Administration (SSA). Learn more here: http://www.cdc.gov/cfs/news/features/disability.html
Preparing for a doctor’s visit
You may not know where to begin when speaking with your physician about CFS. Here are some things that may help you prepare before you head off to the doctor’s office to ask about chronic fatigue syndrome.
You might want to gather materials and information that include:
- A medical journal: It is very important to try to keep an accurate medical diary or journal listing your symptoms, when they occurred, what may have made them worse, etc. Be as specific as you can including all other abnormal symptoms aside from the fatigue, i.e. confusion, headaches, sore throat, abdominal issues, etc.List in this journal any life issues or major emotional stressors that you have been experiencing, i.e. divorce, moving, loss of a loved one, new job, etc.
- Medical records: It is important to have an accurate list of any other conditions for which you’re being treated including the names of any medications, vitamins or supplements you take regularly.
Your physician may ask the following questions:
- Are you having trouble sleeping?
- How often do you feel depressed or anxious?
- How much do your symptoms limit your ability to function? For example, have you ever had to miss school or work because of your symptoms?
- What treatments have you tried so far for this condition? How have they worked?
Here are some questions that you may wish to ask the doctor:
- What tests will you recommend?
- If these tests are not conclusive, what additional tests might I need or steps will you take to determine the cause of my symptoms?
- What would you need to know or conclude to make a diagnosis of chronic fatigue syndrome?
- Are there lifestyle changes or treatments that might help my symptoms now?
- Do you have any resource materials I can take home with me?
- What websites do you recommend?
- What activities should I be doing or avoiding while we’re seeking a diagnosis?
- Would you recommend that I also see a mental health provider like a counselor or psychologist?
A new diagnosis of chronic fatigue syndrome may feel overwhelming, but it doesn’t have to. There are many feelings that go along with learning to cope with a chronic illness and they are all normal. You may not know where to turn for advice, support, or information. Your [family, friends, and caregivers] may feel the same way.
The first thing to understand is that a person with CFS, lupus, fibromyalgia, or any other chronic condition is just that. A person. The disease should not become your identity. There is so much more to each individual than their diagnosis, so maintaining a positive but realistic attitude can really help when learning to live with any chronic condition. Try to lead as full of a life as possible, understanding and respecting your limitations, and realize that this is just a part of your life, meaning that the disease is what you have, not who you are. If you are [feeling depressed or hopeless], or having trouble accepting your diagnosis, please seek counseling from a professional to provide the tools to help you cope with these complicated feelings.
Please do not attempt to self-diagnose CFS. If you suspect that you may have CFS seek the diagnosis from a medical provider. It is very possible that the origin of your fatigue and other symptoms stems from an altogether different condition. If you or someone you care about is showing any of the above signs or symptoms, getting a quick, accurate diagnosis and early treatment, can help to minimize the symptoms of CFS, creating the best possible outcome and quality of life. CDC research suggests that early diagnosis and treatment of CFS can increase the likelihood of improvement.
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**All resources provided by Molly’s Fund 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 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 medical provider with any specific questions or concerns.