Are you tired of feeling tired all the time, no matter how much rest you get? Chronic fatigue syndrome, or CFS, might be the culprit. It is estimated that approximately 2.5 million Americans suffer from CFS, and women are diagnosed with the condition at two to four times the rate of men. With the recent onset of Long COVID, I suspect the number of people facing chronic, debilitating fatigue is higher than ever.
But what exactly is CFS, and how can you tell if you have it? Let’s break down the basics of CFS, including its symptoms, diagnosis, and treatment options.
What is chronic fatigue syndrome (CFS)?
Chronic fatigue syndrome, or CFS, is a medical condition that causes people to feel extremely tired and exhausted for a long time. If you have CFS, you may feel like you don’t have any energy, even if you rest a lot. It can affect your daily life, making it hard to do things you used to enjoy, like playing sports or hanging out with friends. When severe, it can be difficult to simply stand upright or lift a hairbrush.
CFS is a complex disorder that may be caused by a variety of factors, such as hormonal imbalances, immune dysfunction, and gut dysbiosis. I’ve found the best approach to look at the root causes of CFS and then work with practitioners to develop a personalized treatment plan to help restore energy and improve overall health.
What causes chronic fatigue syndrome (CFS)?
Chronic fatigue can be linked to your body’s energy factories. Mitochondria are the powerhouses of cells that convert food and oxygen into energy. Mitochondria can become damaged quite easily, causing your metabolism to run less efficiently or even shut down completely. This can result in a range of symptoms, including physical and mental fatigue, memory loss, pain, and rapid aging. Chronic fatigue is the most common symptom associated with poorly functioning mitochondria, and it can have a tremendous impact on your daily life.
Early on in my health journey, and years before an diagnosis, an infectious disease doctor suggested that I might have stupid mitochondria. He wasn’t too far off.
Along with damaged mitochondria, CFS can be triggered by a variety of factors, such as:
- Viral infections such as Epstein-Barr virus
- Hormonal imbalances
- Gut health issues
- Environmental toxins
- Mold-related illness
- Autoimmunity
- Underlining infections (such as dental infections, Lyme Disease)
- Food sensitivities/allergies
What Does Chronic Fatigue Feel Like?
Fatigue can manifest in different ways for different people. Some people may feel a general sense of tiredness or exhaustion, while others may experience more specific symptoms, such as muscle weakness, headaches, and difficulty concentrating. The tiredness goes beyond the feeling of merely having slept poorly, and often manifest as a crushing and debilitating sense of physical and mental fatigue.
Who is at risk for chronic fatigue syndrome (CFS)?
CFS can affect anyone, but women are more diagnosed with CFS at a much higher rate than men, and it often affects people in their 40s and 50s. Other factors that may increase the risk of developing CFS include viral infections, hormonal imbalances, stress, exposure to environmental toxins, and other underlying imbalances in the body. However, these risk factors don’t necessarily mean that you will develop CFS.
Symptoms of chronic fatigue syndrome
In addition to fatigue, people with CFS may experience a range of symptoms, including:
- Muscle and joint pain
- Headaches
- Difficulty concentrating
- Sleep disturbances
- Tender lymph nodes in the neck or armpits
- A sore throat
- Shortness of breath
- Irregular heartbeat
- Muscle weakness
How is chronic fatigue syndrome (CFS) diagnosed?
Diagnosing CFS requires ruling out other potential causes of fatigue, such as sleep disorders, thyroid dysfunction, hormone imbalance, and autoimmune conditions. A thorough evaluation may include a physical exam, blood tests, and other diagnostic tests as needed. It’s often a lengthy and involved process.
Chronic Fatigue Syndrome Treatment
The good news is that there are things you can do to protect your mitochondria, address factors contributing to your fatigue, and promote better energy levels. By taking steps to support your body’s natural energy production, you can help keep your mitochondria healthy and avoid the negative effects of chronic fatigue.
When we talk about chronic fatigue, practitioners are looking at things like Lyme disease and mold, nutrient malabsorption, gut health, and sleep apnea. They also look at emotional health because sometimes people have had childhood trauma that can predispose one to issues later in life.
A good doctor will examine immune health, mineral and nutrient levels, and assess if there is an underlying infection. They investigate whether there is a toxicity, if gut health a problem, and whether the patient is getting adequate sleep. Doctors may also look at lifestyle factors, such as stress and lack of exercise, that can contribute to fatigue.
From there, they may recommend lifestyle changes, including improved sleep habits, a healthier diet, targeted supplementation, stress reduction, prescription medications, and, if tolerated, some exercise.
Chronic fatigue syndrome is just one of the dozen or so diagnoses I’ve collected over the years. I recently compiled a guide of all the things I’ve learned and applied that have helped me: Autoimmune Disease: My 14-Step Roadmap To Recovery. If you’re suffering from CFS, I invite you to take a look and talk to your doctor about anything you think could help.
Wow, other than feeling extreme exhaustion, I didn’t know there could be other physical symptoms such as pain. It sounds like it can be very difficult to live with, and yes, I agree ~ people should talk to their doctor! I once heard someone say that we ask more of our fast food orders than we do our doctors, and that really hit me. I would add don’t let the doctor rush you out the door and change doctors if he doesn’t believe you when you tell him your symptoms.
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“We ask more of our fast food orders than we do our doctors.” Wow! Unfortunately, that’s so true. I completely agree with switching doctors if they don’t listen or believe… I’ve changed doctors countless times, and always for the better. Whether sick or well, we each need to be our own advocate and find care that aligns with what we need because no one else will care as much as we do.
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You described all the symptoms I’ve experienced after my bout with COVID. I’m laying blame on the virus. It’s been since late March that I had it, so I may need a few more weeks to get my energy back. If not, I’ll look into your other ideas.
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Oh no, E.A.–I’m so sorry to hear you’re dealing with some of the nasty symptoms. 😢 I have two past posts with some things that helped me:. Unfortunately, I’ve has so much testing and tried so many thing that it’s hard to pinpoint exactly what the root cause and effective solutions are, but maybe this will give you some ideas. The latter has a link to a long covid researchers protocol… it’s bit high-level but great info I’ve paid exorbitant $$ to gradually learn over the last decade, and a good place to start.
https://existentialergonomics.com/2023/01/16/autoimmune-disease-my-14-step-roadmap-to-recovery/
https://existentialergonomics.com/2023/03/05/a-helpful-resource-for-those-suffering-from-chronic-illness/
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Thank you for sharing all your information with me. I really appreciate it!
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I’ve found that the hardest part is finding a doctor who is willing/knowledgeable to discuss ME/CFS. I’ve been living with all the hallmark signs of this for several years and have long suspected that my muscle weakness, fatigue, brain fog, etc, are at least partly due to CFS. One provider did review and determine I met all the diagnostic criteria after years of lengthy, in-depth testing to rule out everything else –but was unwilling to follow me for it. I’ve since tried three different doctors, and all of them tell me they’re not comfortable discussing it. Finding a thorough, willing provider can sometimes be the biggest obstacle with chronic illness, even more challenging than the symptoms themselves!
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Yes, it really is so hard to find doctors who will listen, diagnose, and treat. I had never heard of CFS when I was diagnosed after ~3-4 years of being ill and dozens of doctors appointments. I was so fortunate in that regard. Unfortunately, it seems most of the good doctors are in private practice and don’t take insurance, so we’ve basically sacrificed all else to budget for decent healthcare, which has been worth it. To be disbelieved is so discouraging and invalidating, and I completely agree that it can be worse that the symptoms. It breaks my heart that so many people must still be trapped in that limbo of feeling sick, but looking well and not being acknowledged.
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This was an informative read, Erin. You hear so much about long COVID these days and the longterm effects of this pandemic are yet to be truly assessed. Good to know about CFS as it too can be debilitating – and getting treatment early can help with the feelings of helplines and exhaustion.
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It sounds like long COVID is becoming somewhat common, unfortunately. It’s so important to raise awareness, through. I spent 4-5 years bouncing between siloed specialist before anyone mentioned CFS. I never considered all the random symptoms were related, and I felt helpless and hopeless for so long. Even without a cure or effective treatment, being able to give the symptoms a name and remove the stigma of “it must be in you head” feels like a huge accomplishment.
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