Chronic fatigue syndrome is a very debilitating disease of unknown origin. It’s characterized by persistent exhaustion, reduction of productivity, loss of quality of life, along with depression.
Rather than simply being a symptom of another disease (which it can be), it’s a debilitating issue all on its own that sometimes cannot be properly diagnosed or treated due to the abundance of symptoms that sometimes come and go.
But the thing that makes it chronic is the fact that it always comes back.
The people who get CFS are varied, making diagnosis especially difficult. Over one million Americans have it, and many more around the world. In fact, it’s even got a new name since so many people have it.
The new name is myalgic encephalomyelitis and it is now often called ME for short.
In this report, we’re going to call it CFS since that’s still what it’s most commonly called.
However, ME is probably more accurate.
What we do know about CFS is:
- People who get it are often in their 40s and 50s – but anyone can get it.
- Women develop it four times as often as others.
- It’s often not serious but for about a quarter it is severe.
If the condition is mild, most people manage it on their own and never even seek professional care about it because they think it’s normal.
People with moderate symptoms tend to seek help because they cannot move around for long periods of time and have no choice but to nap in the afternoons. This is when it starts interfering with jobs or worse, causing additional issues as people seek relief using stimulating drugs.
When symptoms get severe, it’s beginning to affect the quality of life in a bad way – as badly as anyone with issues people deem more serious like lupus, heart disease, multiple sclerosis or rheumatoid arthritis.
Triggers of CFS
Right now, we do not know what causes CFS. However, there does seem to be a family genetic history to it in some cases. We don’t know yet if this is just that the family is more susceptible, or that something in the genetic makeup is causing it.
There is also some research to suggest that some people who have CFS also have the Epstein-Barr virus (known to cause mononucleosis) or the Ross River virus (a debilitating virus which affects joints, making them painful and swollen).
In addition, a lot of CFS suffers are found to have Coxiella burnetii – a bacterial pathogen which causes fever, usually when someone is already infected with something else. But we still don’t know what comes first, CFS or another disease such as Lyme Disease which is also characterized by chronic fatigue.
If you or someone you know gets sick and then seems to take an extra long time to recover or is not recovering, suspect CFS to be an issue. If you know what it could be, you can alert the doctor who can ask the right questions so that you can get the right diagnosis.
Getting a Diagnosis
One thing to remember is that even the experts don’t know what is causing CFS. There are theories, and some doctors don’t even want to deal with it at all.
The medical professionals disagree about CFS. Some don’t even think it’s a real illness.
If you run into one of those, find a new doctor.
But, suffice it to say, getting a diagnosis is very hard, but you can get one if that’s what’s wrong with you.
Your primary care doctor will probably send you to a specialist, more than likely a rheumatologist. This is likely not the best place to go because they don’t usually want to treat CFS. You probably want to be referred to a functional medicine doctor who treats these types of conditions if you think that’s what you have.
Sometimes doctors don’t want to treat people with CFS. Why? Because so many people diagnose themselves with CFS and aren’t willing to go through the tests that need to be done to rule out everything else it could be.
And even after all the tests, some doctors still don’t want to diagnose CFS because they want to find the cause first. The tests are not a bad thing because you never know, but they can be an impediment to getting a CFS diagnosis.
The way CFS is diagnosed is by exclusion.
If you don’t have any of the other conditions that can cause CFS, then you have CFS from an unidentified cause. This is difficult for most doctors to do unless they have experience with CFS and ME.
Conditions that your doctor will want to test you to rule them out or treat are:
* Cancer – You could have undiagnosed cancer that is making you feel bad, so getting tests that show whether you have any cancer in your body can help tremendously. Many different tests will be conducted, from lumbar punctures to imaging, to blood and urine tests.
* Lyme Disease – Many people who have Lyme disease also have CFS, and sometimes the first indication you have Lyme disease is having CFS symptoms. This is checked via a blood test. Note that you could have had Lyme disease and it can still be the cause even with a negative test.
* Lupus – This is a serious condition that sometimes leads to death and should be diagnosed. It can also cause chronic fatigue. This is done via a urine test called an antinuclear antibody test (ANA), but also via various blood tests. Sometimes imaging tests are done as well as a biopsy.
* Multiple Sclerosis – Some of the symptoms of CFS can be much like early MS, so that must be ruled out too. This is done via a lumbar puncture as well as an MRI. Usually, the MRI is first.
* Vitamin Deficiencies – You may not realize you have a vitamin and mineral deficiency. Many people today take vitamins and try to eat right, but digestive disorders and genetics can play into problems with the vitamins working. This test is a simple blood test.
* Thyroid Disorders – If you have a thyroid issue, it can manifest as chronic fatigue and if treated you could be cured of it, in some cases anyway. This test is usually a blood test, but an ultrasound of your thyroid may also be ordered.
* Mitochondrial Disorders – This is a disorder characterized by the body’s inability to produce adequate energy to perform all its functions. This is conducted via an intermuscular biopsy from your upper thigh.
The problem is, if you do have any of these conditions, they will end up the blame for your CFS when they may not be. CFS may stand on its own. But, you may feel better once you’re treated for the underlying conditions you may also have.
Let’s talk about some treatment options if you are diagnosed with CFS.
Consider Getting a Mitochondrial Function Test
This test (mentioned above) is difficult, invasive and costly. You may not be able to do it.
But it can be worth it if you’ve tried everything else and nothing is showing up. They take a piece of your thigh, which doesn’t cause problems but does leave a scar.
This test will show if you have a problem with processing energy so that you can function normally or not. If you do have a problem, then you’ll know to take extra vitamins and get screened for issues that affect people with mitochondrial disorders like thyroid disease and diabetes.
Eat a Healthy Whole Food Diet
When you have CFS, your best defense is a good diet. But, remember that for everyone a good diet is different.
It’s a good idea to get tested for allergies to find out if you have any issues with certain foods like wheat. Some people even have allergies to raw fruit like avocado, bananas, mangos and russet potatoes. Incidentally, people who are sensitive to these foods are usually also sensitive to latex.
There is no reason to give up wheat unless you have a problem with it.
If you look at most healthy diets that have scholarly studies backing them up, though, they all have one thing in common. Eat whole foods that are not processed. Whether you eat meat or choose not to, there are many choices within whole unprocessed foods to choose from.
Focus on reducing processed food like white flour and white sugar from your diet.
Don’t eat additives or fake ingredients that don’t offer any nutritional support. Focus most of your food on high nutrition so that you can get as many of the macro and micronutrients you need from your diet. It can help to educate yourself on what the human body really needs each day in order to thrive.
Develop an Exercise Plan
Even though you’re tired, you need to move, but you need to move in a smart way. You may not be able to do as much as you want to but doing something each day will help. You need to start at your level and not worry about what people say you should do.
Set your intentions and build up gradually. But do not do hard exercise; instead, focus on keeping your muscles strong and the flexibility that you need to live your daily life.
Since muscle weakness is a serious problem for people with CFS, consider doing muscle strengthening exercises instead of exercises that use a lot of energy. Using resistance bands is a great way to be gentle.
Starting a Pilates or yoga practice is also a great way to get in exercise without overexerting yourself.
Some days you may only be able to walk to your mailbox, while some days you’ll feel as if you can do more. Just do one thing each day and build from there. If you do something that makes it worse, stop doing it.
Make sure you also rest.
Some people with CFS also have jobs, so you want to get enough rest so that you can still do your job. Strengthen the muscles you need for your job in a gentle way and focus on getting the type of rest you need so that you can keep doing that job.
Establish a Sleep Regimen
Most people do find relief in their issues with sleep by setting a sleep regimen. Go to bed at the same time each night.
Do the same rituals each night.
Make your bedroom an oasis for sleep by ridding yourself of technology, lights, and things that distract from sleep. Put a white noise machine in there or a fan. Keep the temperature as low as possible – around 68 degrees is best.
Make this your special time so that you can sleep and not focus on anything else but sleep.
Invest in pajamas that are comfortable, sheets that are soft, and a mattress that is perfect for your needs. Get blackout blinds on your windows and make sure it’s dark. You’re going to sleep much better.
Set your alarm to give you only 7 to 9 hours of sleep a night.
You want to avoid oversleeping as much as you want to avoid under-sleeping. In some cases, people with depression do best on about six hours of sleep so you may want to test this idea out by trying different amounts of time.
It may also help to take a hot bath before bed or meditate so that you can clear your mind and fall asleep faster.
Drink Plenty of Fresh Water
Throughout the day, drink plenty of fresh, filtered water so that you stay hydrated. Most people do well on eight to ten 8-oz glasses of water a day. The trick is to drink it throughout the day and preferably not with meals.
Watering down your food in your stomach can impede digestion.
If you drink all day long, you’re going to be more likely to get the required amount down, digest your food better and have overall better digestion.
Take Vitamins That You Need
You’ve likely had blood tests by now that indicate your vitamin levels. Take the vitamins that may have been recommended.
In most cases, people only need B12 and D3, but if you have a lot of muscle pain some people find that they need magnesium. It’s important to talk to your doctor before adding these vitamins or supplements.
Clean Up Your Environment
Many of us have a lot more chemicals in our lives than we think. The formaldehyde in your carpet and clothing, the chemicals used to clean your home and the air we breathe can be full of chemicals and environmental hazards.
Not to mention what we drive and wear.
You can clean this up as much as possible by investing in a good air filter and trying to buy healthier things such as glass for storing instead of plastic and reusing bags instead of using plastic or even paper.
Buying natural fibers that aren’t treated harshly and so forth can help a lot. Watching what you put on your skin and inside your body to avoid as many chemicals as possible will also help. Every little change will make a big difference.
The Way CFS Can Change Your Lifestyle
In many ways, a diagnosis of CFS can totally change your lifestyle. Even before your diagnosis, the changes might not be so great at first because you don’t know what’s wrong or what to do.
It can be insidious.
You may find that you’re drinking more and more coffee, eating more sugar, and even taking illicit drugs to stay active. But, you can take charge and make good lifestyle changes that will help even if it won’t cure you.
- Learn to Pace Yourself – Understand that some days you’ll have more energy than others, but that isn’t an excuse to overdo it. Be aware that you simply cannot do what you used to do. Start with the basic needs of life, and work toward being able to get those done, such as cleaning your house and bathing. These are more important than going for a run.
- Changing Your Job – This may be the hardest change. But if you have a physically demanding job, you may find that you simply can’t keep doing it. You may need to seek retraining, or you may (depending on your age) determine that you need to seek out disability. At least in the USA, CFS is covered under the Americans with Disabilities Act and your job needs to make certain concessions, but you also still need to perform the main aspects of your job to keep it.
- Learn to Eat Right – Eating right for you may be different than what it means for someone else. Find the right diet for you by starting with an elimination diet. This will remove foods from your diet and you’ll find out if you feel better. Be willing to try different diets for 30 days at a time to find out if they help. You can’t go wrong eliminating processed food and junk.
- Change How You Exercise – If you were accustomed to exercising differently than you can now, understand that you can still do something. You can do water exercises, a softer yoga practice, and walk instead of high-impact workouts and movements that exert more energy than you have. And there are, sadly, some people who have CFS so badly that they really cannot do any type of exercise. Work with your medical professionals to know what will help you best.
- Learn to Love Yourself – One of the most important aspects of CFS that will help is to learn to love yourself. It’s frustrating to have a condition that is not well researched and is so misunderstood. But you know what’s real and what’s not. Demand people respect you and ask for what you need.
- Let Go of Unsupportive People – It’s so hard to accept when you find that there are people in your life that really don’t support you. Whether they’re doctors, or your spouse, or children, or family and friends, it can happen. But if they still don’t “believe” you or they are judgmental and cruel even after you’ve asked for what you need, you may have to let them go from your life so that you can take care of yourself.
Find professionals that are supportive and do what you need to do to help yourself. You are the best arbiter of your own health. You’re also the best advocate you have.
The Outlook for CFS Sufferers
Right now, there is no cure for chronic fatigue syndrome. But, there are enough people diagnosed now that it’s on the radar of professionals, and it is being researched more.
Whenever something isn’t really that common, it’s harder to fund research. But, there is research happening, if under different names. Some of the names across the country that CFS has is:
- Myalgic encephalomyelitis (ME)
- Postviral fatigue syndrome (PVFS)
- Akureyri disease
- Benign myalgic encephalomyelitis
- Chronic fatigue immune dysfunction
- Chronic infectious mononucleosis
Because of all the different names, you may have CFS but it may have been called something else by your doctor. Every race is equally susceptible to CFS, as are different sexes, but right now it’s mostly diagnosed in females, and African Americans and Native Americans seem to have it at higher rates.
People who can be diagnosed often find that they can live with the condition with a support system that accepts this condition as real. Being under the care of a caring doctor, physical therapist, and a knowledgeable psychological professional who knows the condition is real but helps you deal with it in realistic ways is helpful.
This is a condition that will need to be managed for a lifetime. You’ll have good days and bad days. It’s good to use every resource that you have including:
- Medical doctors
- Physical therapists
- Exercise therapists
- Cognitive-behavioral therapists
Plus, learning to pace yourself is essential. Pacing yourself is the ability to accept your condition and not overdo it just because you feel good today.
Pacing yourself while also paying close attention to how you feel and other health issues you may have often helped a person cope with the condition. Learning to deal with other conditions helps too.
For example, if you’re having issues with drugs, weight issues, other health concerns and so forth, it’s important to understand that it’s not all caused by CFS although it may have manifested itself because of your condition – especially when it comes to drugs and self-medicating. It can still be treated on its own, which will help with your overall health.
The important thing is to get started treating yourself better right now, even before you’re officially diagnosed. You can start with diet, hydration, pacing yourself, and trying to live as healthy of a life as possible. Self-love can go a long way when those around you seem to not understand.
If you know someone with this condition, offer your support to help them in some way.