What Else Could It Be
The symptoms of ME/CFS are similar to those of other conditions.
If you think you may have ME/CFS its important to see a GP to make sure you get a correct diagnosis. A GP should also be able to refer you to a ME/CFS specialist if they think it would help you.
Page last reviewed: 29 October 2021 Next review due: 29 October 2024
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What Are The Common Symptoms Of Cfs
Being diagnosed with CFS could mean that you might experience the following symptoms:
- Difficulty in coordinating your muscle movements
- Muscle soreness or pain
- Soreness or tenderness in your neck or armpit
- Hands and feet feeling cold
- Malaise after overexerting yourself
- Low-grade fever/sudden drop in temperature
- Sensitivity to certain sounds, scents, or lights
Which of these symptoms do you have? If you experienced at least four of these symptoms plus extreme fatigue for about half the year, then you might have chronic fatigue syndrome. Doctors would need to diagnose your condition and rule out other possible health conditions such as:
How Would You Describe Fatigue Associated With Pots
People with POTS experience fatigue differently. Many describe it as feeling beyond exhausted. Its as if your energy is completely depleted. The fatigue is probably hundreds of times worse than your worst flu. People with POTS may also have trouble concentrating and thinking straight. Doing simple tasks may feel like youve just run a marathon.
This fatigue might come and go, hitting you without warning daily, weekly or less frequently. For some people, extreme fatigue lasts for days. Others may experience periodic attacks. It can come on at any moment even if you just woke up. And there is no amount of sleep or coffee that can make it go away.
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Mental Health Support And Me/cfs
ME/CFS is not a psychological disorder. However, living with a chronic illness is challenging, especially one that involves missing out on normal life activities, and this may lead to mental health problems like anxiety or depression.
Speaking with a qualified mental health professional who understands the challenges of living with ME/CFS can be very helpful. They can help with things such as coping with changes to schooling, employment or social activities, and symptoms such as difficulty with sleep or pain. With the availability of Medicare rebates for telehealth, many mental health practitioners now offer remote consultations which makes healthcare more accessible for those who are housebound or bedbound with ME/CFS.
What Causes Your Fatigue
Many physical and mental illnesses, as well as lifestyle factors, can cause your fatigue, and that can make it hard to diagnose. In some cases, it might be something simple and easy to fix, like having caffeine at bedtime. But other causes, like heart disease or COPD, are serious, and you may need to start long-term treatment right away.
Your doctor can help you sift through your health issues, as well as diet, exercise, and other lifestyle habits, in order to zero in on the cause and help you on the road to recovery.
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This Isnt A Sob Story
I know its pretty negative, but I just wanted to truly get across the hard truth of living with Chronic Fatigue Sydrome. When you suffer from something like this, life is hard. But we just get on with it. Because complaining about it wont make the exhaustion go away.
The best thing is to take it one day at a time and prioritise rest. I have a number of things I can do while Im resting now, so Im not bored writing being one of them which is really important. My brain is still active, it wants to get up and do things, my body just cant keep up.
German Study Suggests A Possible Link But Researchers May Have Overreached Says Me/cfs Expert
byIngrid Hein, Staff Writer, MedPage Today September 27, 2022
Researchers in Germany say they cannot rule out a small risk for key symptoms of myalgic encephalomyelitis/chronic fatigue syndrome in children who had a COVID-19 infection.
In a cross-sectional study involving more than 600 children, a crude analysis found that clustered ME/CFS symptoms were more frequently reported in those with SARS-CoV-2 seropositivity compared to those who were seronegative , according to Anna-Lisa Sorg, MSc, of Ludwig-Maximilians-University Munich, and colleagues.
However, after adjusting for sex, age, and pre-existing disease, the association was smaller and no longer statistically significant , as shown in the team’s study in JAMA Network Open.
A risk for substantial fatigue in the seropositive group was seen in both crude and adjusted analyses.
But the effect sizes for all outcomes were “reduced markedly” when the researchers only examined patients who were unaware of their SARS-CoV-2 status:
- Clustered ME/CFS symptoms: RR 1.08
- Substantial fatigue: RR 1.43
“These findings suggest that the risk of ME/CFS in children and adolescents owing to SARS-CoV-2 infection may be very small,” wrote Sorg and coauthors, adding that “recall bias may contribute to risk estimates of long COVID-19 symptoms in children.”
Jason noted that the researchers never asked parents, “‘Has your kid ever been diagnosed with CFS?’ — This is the basic question to ask.”
Disclosures
Primary Source
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Preventing And Treating Chronic Fatigue Syndrome
You can reduce the likelihood youll develop CFS by taking care of your health, sleeping enough and avoiding infections.
If youre diagnosed with CFS, improving your sleep, treating any mood disorders and managing pain can help. Physical therapy can help some people, and cognitive therapy can help if you have trouble concentrating. CFS is rarely fatal, and some people recover spontaneously.
Each person is different, so it is important to learn your limits and pace yourself with exercise and any activity, Dr. Hsu said. Trying to push yourself can cause exhaustion and make your symptoms worse.
Theres a lot of misinformation about treatments for CFS. Antibiotics, special diets, vitamin supplements and steroids have not shown consistent benefit, Dr. Hsu said.
There is hope for better treatments for CFS in the future, Dr. Hsu said. And since people recovering from COVID-19 sometimes develop CFS, there are new opportunities to learn about the disease.
How Does Me/cfs Affect People
ME/CFS affects different people in different ways, some more severely than others. There are four levels of severity of ME/CFS, which give an indication of the level of disability ME/CFS can create:
- mild: 50% reduction in pre-illness activity
- moderate: mostly housebound
- severe: mostly bedridden
- very severe: totally bedridden and need help with basic activities including nutrition and hydration.
The severity of ME/CFS can vary over time. A person living with ME/CFS could be at one level of severity now, then their disease could either improve or deteriorate over time. For some patients, their disease can worsen significantly with no known cause. Other patients have a fluctuating illness where they have better and worse periods, which last for months or years. It is unclear why this happens.
For most people, ME/CFS is a lifelong disease. Full recovery is rare and estimated at less than 10%. For some people with ME/CFS, as time passes and their disease improves, they will find they can do more, but it is a slow and gradual process. However, this is not the case for everyone. Some people find their disease worsens over time, others may remain somewhat stable. With support and pacing, people can often improve their quality of life.
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Nevertheless I Will Keep On Keeping On
If you are struggling with CFS.ME please know that it isnt all bad, and there are ways to get through it. You are also not alone! So many of us are going through the same thing, and we are carrying on! I also know of many people who have fully recovered, which is nuts but it is a possibility.
If you ever need someone to talk to or share with though, I am here.
For more posts on Chronic Fatigue and what it really feels like, feel free to take a look at all my posts about it here.
Chronic Fatigue Syndrome: Gradually Figuring Out Whats Wrong
In 1983, a health professional in her 30s walked into my office and said, Ive been healthy all of my life. A year ago, I came down with some kind of virus sore throat, aching muscles, swollen lymph glands, fever. My fatigue was so bad I was in bed for nearly a week. Many of the symptoms gradually improved, but the terrible fatigue and difficulty thinking have not gotten better. Theyre so bad I cant fulfill my responsibilities at home or at work. This illness is affecting my brain, stealing my energy, and affecting my immune system. Its keeping me from realizing my dreams.
Theres a piece of advice attributed to a famous physician, William Osler, that every medical student probably has heard: Listen to your patient. The patient is telling you the diagnosis. But I wasnt sure it applied in this case.
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How Is Chronic Fatigue Syndrome Treated
There’s no known cure for chronic fatigue syndrome, but the symptoms can be treated. Experts suggest focusing on the most disruptive symptoms first, and working with a doctor to manage them:
- Post-exertional malaise. For someone whose symptoms get worse after even mild activity, experts suggest pacing their activities. This means planning for a balance of activity and rest based on what the person feels are their limits. This can be different from one person to the next. Someone with CFS should not be pushed to do more than they feel they can tolerate, as this can lead to a crash, or worsening of symptoms.
- Dizziness. People who get dizzy or feel weak or lightheaded when they sit up or stand might need to drink more fluids, use more salt in their foods, or wear support stockings.
- Sleep problems. Getting good sleep can help someone overcome CFS-related sleep problems.
- Problems with concentration and memory. Finding ways to keep track of important things can help with concentration or memory problems.
- Headaches and stomachaches. Gentle massage and heat may help some people with pain from CFS.
Doctors may also suggest over-the-counter or prescription medicines for some of these symptoms.
What Are The Treatments For Chronic Fatigue Syndrome
There is no cure or approved treatment for CFS, but you may be able to treat or manage some of your symptoms. You, your family, and your health care provider should work together to decide on a plan. You should figure out which symptom causes the most problems and try to treat that first. For example, if sleep problems affect you the most, you might first try using good sleep habits. If those do not help, you may need to take medicines or see a sleep specialist.
Strategies such as learning new ways to manage activity can also be helpful. You need to make sure that you do not “push and crash.” This can happen when you feel better, do too much, and then get worse again.
Since the process of developing a treatment plan and attending to self-care can be hard if you have CFS, it is important to have support from family members and friends.
Don’t try any new treatments without talking to your health care provider. Some treatments that are promoted as cures for CFS are unproven, often costly, and could be dangerous.
Centers for Disease Control and Prevention
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Get Specialist Care When You Need It
Visit your doctor every few months to help track your symptoms and check for any need to change your treatment.
Get specialized care if you need it. For example:
- A rehabilitation specialist can help you treat pain and improve your ability to do your daily tasks.
- A pain management specialist can offer a number of pain treatments.
- There are some specialists who work with experimental treatments such as antiviral medicines.
Your Doctor May Also:
- take your sleep history, including how much sleep you get each night, what the quality of your sleep is like, and whether you snore, wake or stop breathing in the night
- do a physical examination to check for signs of illness or disease
- carry out tests to rule out physical causes, such as blood and urine tests.
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What Are The Symptoms
Symptoms can vary with ME/CFS. If you have ME/CFS:
- You feel exhausted all or much of the time. And it doesnt get better with rest.
- Your symptoms often flare up after a mental or physical activity that used to be no problem for you. There may be a day or two delay before it starts. And it may take days, weeks, or more to feel better.
- You have problems sleeping. Or you may wake up feeling tired or not rested.
- It may be harder for you to think clearly, concentrate, and remember things.
- You may feel dizzy, weak, or in more pain when you have been standing or sitting upright for a long time.
- You may also have headaches, muscle and joint pain, a sore throat, and tender glands in your neck or armpits.
Depression is common with ME/CFS, and it can make your other symptoms worse.
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You Dont Have An Appetite
In more severe cases of COVID-19, Khabbaza says patients often have more serious delirium that accompanies their fatigue. This, he says, may be a result of a lack of appetiteanother symptom that can help you distinguish if your fatigue is being caused by COVID. People may also have lower appetites so their nutritional status might not be great, they might be sleeping too little or too much, which can affect how your mind is wired, Khabbaza says. And for more helpful information delivered to your inbox, .
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Enhancing Healthcare Team Outcomes
Chronic fatigue syndrome frequently poses a diagnostic dilemma. The hallmark symptom is the post-exertional fatigue associated with numerous neurological, cardiovascular, respiratory, and gastrointestinal complaints. Patients can also exhibit uncontrolled anxiety, panic attacks, and impaired social functioning. Chronic fatigue syndrome is a diagnosis made on clinical examination after excluding other possible etiologies. Therefore, it is essential to consult with an interprofessional team of specialists, including a pain specialist, psychiatrist, psychotherapist, nursing staff, other clinicians , and possibly a physical therapist and/or pharmacist, depending on the treatment course taken. Even though chronic fatigue syndrome has fatigue as one of the three mandatory symptoms, it is a complex multisystem neurological disease with evidence of inflammation in the brain. As the term myalgic encephalomyelitis indicates, a neurology consultation can be useful when indicated.
All interprofessional team members must follow the patient and record and progress or deterioration of their condition and inform other team members so changes in the management approach can occur if necessary. Open communication and diligent documentation are essential to the interprofessional strategy so that all team members can access the same patient data. This will help drive better outcomes.
It Feels Like Im Looking At A 3
When I was a child, I used to love the books that came with 3-D glasses. I was enamored by looking at the books without the glasses, seeing the ways the blue and red inks overlapped partially but not completely. Sometimes, when Im experiencing severe fatigue, this is the way I envision my body: as overlapping parts that arent quite meeting, causing my experience to be a bit blurred. My own body and mind are out of sync.
Using more universal or everyday experiences a person may have encountered in their life is a helpful way to explain symptoms. Ive found that if a person has had a similar experience, theyre more likely to understand my symptoms at least a little bit.
Coming up with these ways to relay my experiences to others has helped me feel less alone. Its also allowed those I care about to understand that my fatigue is so much more than being tired.
If you have someone in your life with a hard-to-understand chronic illness, you can support them by listening to them, believing them, and trying to understand.
As we open our minds and hearts to things we dont understand, well be able to relate more to each other, fight loneliness and isolation, and build connections.
Angie Ebba is a queer disabled artist who teaches writing workshops and performs nationwide. Angie believes in the power of art, writing, and performance to help us gain a better understanding of ourselves, build community, and make change. You can find Angie on her website, her blog, or .
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When Should You Call Your Doctor
It’s important to talk to your doctor about any symptoms you may have.
- Severe fatigue that lasts longer than 2 weeks, causes you to limit your usual activities, and does not improve with rest.
- Sleep problems that last for more than 1 to 2 months. These problems may include being unable to fall asleep or stay asleep, tossing and turning, and waking up feeling tired or not rested.
- Swelling in the glands in your neck or armpits that lasts for at least 2 weeks.
- Severe fatigue along with frequent urination , extreme thirst, weight loss, or blurred vision. Fatigue that occurs with some or all of these may be a symptom of undiagnosed diabetes.
- Headache that lasts longer than 2 weeks.
How Is A Pots Diagnosis Made
Problems with the autonomic nervous system can be difficult to diagnose. The standard test for POTS is the tilt table test. During the test, you are secured to a table that tilts from being horizontal to almost a 90-degree angle. The test measures your hearts response to switching from laying down to standing up. Some people with POTS faint during this test, even if they rarely faint standing up.
Although the test seems straightforward, many things can interfere with it. Its important that a POTS specialist oversees it. Its best to work with a doctor who has diagnosed and treated patients with POTS. This could be a cardiologist, a neuromuscular specialist or another doctor.
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