Seek The Correct Diagnosis
An astounding 84 to 91 percent of people with CFS have yet to receive a correct diagnosis, according to a February 2015 paper by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
“Most often, if doctors do not know what is wrong with a patient, they consider it to be depression or anxiety, which implies to family members that this is not a real illness,” notes Dr. Teitelbaum. “As a result, the insurance companies use that as an excuse not to pay your disability benefits or cover your health insurance costs.”
In addition, it’s helpful for your treatment to get a diagnosis from a physician. If you suspect you have CFS but haven’t gotten a diagnosis, look for a doctor who specializes in the condition.
Physiological Findings And Physical Therapy
As most physical therapy treatments are ultimately focused on exercise and movement, physical therapists need to review the aerobic and anaerobic respiratory cycles as they relate to ME/CFS patients.
Physical therapists must recognize that research indicates the aerobic metabolism system in those with ME/CFS is broken and according to Dr. Mark Van Ness of the University of the Pacific, Classic exercise training produces little improvement and may result in PEM. He also states, Aerobic conditioning does not appear to improve or repair broken aerobic metabolism.
‘”’Dialogues for ME/CFS” is made possible with a reward from the Wellcome Public Engagement Fund. Click https://www.dialogues-mecfs.co.uk/ for access to additional scientifically-based videos on ME/CFS.”’
How Can I Care For Myself With Chronic Fatigue Syndrome
In addition to the treatments above, there are things you can do to help manage this condition, such as:
- reducing your stress
- getting plenty of rest
- making sleep a priority if you are having trouble sleeping, check out these tips to improve your sleeping habits
- eating a healthy diet to make sure your body is getting the nutrients it needs
- having plenty of salt if you have low blood pressure and a tendency to feel dizzy or even faint on standing
- learning to prioritise the things you need to get done, and then pacing yourself by dividing them into short times of activity with rest breaks in between
- learning mindfulness, meditation or creative visualisation
- getting out into nature regularly, listening to music and enjoying your pets
- developing a support network of understanding friends and family/whnau for when you need help
- joining a support group if there is one in your area
- talking to your doctor about whether there are any medications or supplements that may help you.
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Caring For Someone With Me/cfs
Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS.
Everyone involved in supporting someone with ME/CFS needs to understand Post Exertional Malaise, which is an abnormal, biological response to exercise or activity. This means the patient will not be able to do all of the activities they used to be able to do, and will benefit from practical and emotional support. People with ME/CFS will each have different needs and preferences, so it is important to talk with them about how best to provide support. This may include help with daily routines, family life, accessing healthcare and other personal priorities.
Living With Chronic Fatigue Syndrome
There are strategies for dealing with the daily challenges of CFS. These may work for you, especially in combination with medications prescribed by your doctor.
- Keep a daily diary to identify times when you have the most energy. Plan your activities for these times.
- Keep up some level of activity and exercise, within your abilities. Your doctor can help you plan an exercise program to maintain your strength at whatever level is possible. Exercise can help your body and mind.
- Give yourself permission to recognize and express your feelings, such as sadness, anger, and frustration.
- Ask for support from family and friends. Look for support groups or counseling in your community. Your doctor is another important source of help. Emotional support is important in coping with a chronic health problem.
- If your memory and concentration are affected by chronic fatigue, keep lists and make notes to remind yourself of important things. Also, give yourself more time for activities that take concentration. Medicine may also help you sleep better, which might improve your memory and concentration.
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My Daily Routine Living With Share Your Health Experience
Even small, mundane banalities are insurmountable and you resent the excessively abnormal amount of your energy that it hijacks. Your fatigue is of a physical, mental and emotional nature from which there is no refuge. You are shackled by this unyielding demon.
Your exhaustion is further compounded by the energy it takes to lie. You lie by faking a smile to the world but this external denial of the war raging within pillages you of even more of your precious energy. The facade of pretending to be healthier than you feel is truly exhausting. Im okay or Fear of me becomes secret code for: I am functioning with great determination on an empty fuel tank, at pain levels even Paul OConnell would struggle to face down but I dont want to appear to be a hypochondriac or allow myself to be defined by this misunderstood curse. The latter is one concession I refuse to make. Even breathing lacks spontaneity and proves a laborious but necessary chore.
Its not difficult to understand why those around you mistakenly suspect that you must be depressed. You are forced to decline invitations, you are unable for meets-ups or even phone conversations, you become increasingly unreliable/unavailable/forgetful, in an attempt to conserve energy you speak as little as possible and its as if the humorous department of your brain has slipped into a coma.
Insomnia taunts you
I sign off with a heartfelt salute to all CFS superheroes and their courageous, self-sacrificing, unsung carers. xx
Root Cause Medical Clinic: Our Mission
At Root Cause Medical Clinic, we uncover the underlying root cause that is creating your bodys ill health or malfunction, ending the discomfort and inconvenience of poor health.
Our main goal is to identify the stressors overwhelming your body. They may be lifestyle or diet-related, or they may emanate from a malfunction of an organ or system, such as the nervous system.
The facts are, these stressors are inhibiting your bodys ability to heal itself. Chronic Fatigue Syndrome is just a symptom.
Our team of clinicians share the same philosophy on health, and combine their experience in functional medicine, nutrition and dietetics, physical therapy and chiropractic.
Root Cause Medical Clinic is located in Clearwater, FL. Ask our team to create a custom health program to help you return to vibrant health.
Wed be more that happy to discuss with you regarding any diagnosis of Chronic Fatigue Syndrome you may have received. Call us at 727-335-0400.
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Children And Teens With Me/cfs
As with adults, the degree to which a child or teens life is impacted by the disease depends on a number of things, including disease severity. If the child is mildly affected, he or she might benefit from a slightly modified school schedule and a reduction in social activity as long as parents and guardians recognize the need to avoid triggering PEM and worsening symptoms. If the child is moderately ill, the school and parent/guardian will need to work together to establish a substantially modified plan of education which might include private tutoring, remote learning, or some type of home-schooling. Children who fall into the moderate-to-severe range are generally unable to attend school at all and need help with even the most basic personal care.
It is important for family members and caregivers to know enough about the disease to understand what is happening and help guide the childs activities in order to prevent worsening of symptoms. For more information about navigating pediatric ME/CFS and working with your childs school, click here.
Managing Your Expectations: Three Steps
Part of accepting the situation is managing your expectations. For example, say you used to go for bike rides, do some hiking, maybe take a canoe out on the river. Youll have to change your expectations about how you will spend your leisure time together. If the sick person has to leave their job, it could mean shifting expectations about your financial future, as well.
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Strategies For Living With Chronic Fatigue Every Day
How Severe Is Your Lack Of Energy?TAKE THE QUIZ
Many people are living with chronic fatigue syndrome . Its a disorder of extreme fatigue or tiredness. A person with CFS can rest more often for months, but the fatigue never goes away. Living with chronic fatigue interrupts your daily activities. Even the smallest thing can become insurmountable in the most severe cases.
A diagnosis can be hard to make when the cause is unknown. A doctor will examine a patient to rule out any underlying medical conditions. If a patient experiences severe fatigue for about 6 months with bed rest not helping at all, then they may be diagnosed with chronic fatigue syndrome.
Here are some strategies you can use to help manage your chronic fatigue syndrome on a daily basis.
Cope With Depression Anxiety And Distress
When you have ME/CFS, you may not be able to do the things you would like to do. This may lead to feelings of frustration and anxiety. It can also lead to depression. Depression is not the same thing as ME/CFS. But it can make your ME/CFS symptoms worse.
- Work with your doctor to watch for signs of depression.
- If your doctor suggests an antidepressant, ask if there is one that can help control your pain and help you sleep, as well as improve your mood.
- For support and help with mood problems, you can also work with a professional counselor who understands ME/CFS.
An ME/CFS support group can be a good source of information and tips for managing your illness. It also gives you a chance to share your frustrations and problems with others who have ME/CFS.
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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.
How I Got Diagnosed With Chronic Fatigue Syndrome
Chronic fatigue. It sounds like something were all experiencing, right? It seems like everyone is functioning on too little sleep, getting by on fumes, hitting the weekend too tired, stressed, and worn out. Fatigue seems to be an epidemic. And yet, when I talk about chronic fatigue syndrome, Im talking about a whole different animal.
Its hard to clarify for those who havent experienced it the difference between the fatigue that most adults are functioning with and what living with chronic fatigue syndrome is like. The name betrays the significance of the actual condition. This isnt simply being tired all the time, this is bone-weary, joint and muscle pain, extreme exhaustion that remains unchanged with sleep, and sleep is often elusive. For most of us, CFS is accompanied by additional symptoms of the illness like swollen glands, sore throats, headaches, cognitive difficulties, fevers, night sweats, and difficulty recovering from any kind of exertion. For me, it feels a lot like an unrelenting flu.
Getty image by Khosrork.
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Children Young People And Me/cfs
ME/CFS can affect people of all ages, including the very young. Young people with ME/CFS, especially children under the age of ten, might have trouble knowing or articulating that something is wrong. They may not realise that their loss of stamina, or other symptoms they are experiencing, are not normal. Alternatively, they may not have the words to describe what they are feeling.
For both younger children and teenagers, schooling can be affected but ME/CFS is not school refusal. While school refusal can often be accompanied by physical complaints , and these complaints may tend to disappear when the young person stays home, the pattern is different with ME/CFS. In a young person with ME/CFS, some symptoms never ease and symptom exacerbation is triggered by activity. In ME/CFS, symptoms are likely to be worse after school attendance, and can reduce with pacing and rest, which includes time away from school or during holidays.
Some young people with ME/CFS can continue to attend school, and others may be too unwell for regular classroom attendance. Parents, healthcare providers, schools and the child or teenager need to work together to come up with a plan for the young persons continued education. This plan needs to take into account the energy limits of ME/CFS. Being creative and flexible is key and might include things like fewer subjects or school from home.
What Causes Chronic Fatigue Syndrome
Despite a significant amount of research over decades, the cause of CFS still remains unknown.
“Amongst many possible causes, the ones that have been most thoroughly studied are viruses, immune dysfunction, endocrine and metabolic dysfunction and neuropsychiatric factors,” notes Dr. Gangani.
It seems that about half of CFS cases â as well as its painful cousin fibromyalgia â are triggered by infections, especially viruses, says Jacob Teitelbaum, MD, a board-certified internist and CFS expert.
Most recently, there’s been a connection made between CFS and COVID-19, especially after the number of cases of CFS skyrocketed during the pandemic. It’s no surprise, seeing as there’s already been well-documented evidence of a wave of CFS cases following the first SARS epidemic in 2003, including one September 2006 study in the âBMJâ.
According to current estimates by the COVID Symptom Study, 10 to 15 percent of people who get COVID-19 will develop post-viral chronic fatigue syndrome, or “long COVID.”
“With over 25 million Americans having had the virus, it is likely that 3 to 5 million will develop chronic fatigue syndrome and/or fibromyalgia from having had COVID-19,” Dr. Teitelbaum says. “Even Dr. Fauci has noted that persistent COVID-19 likely represents post-viral chronic fatigue syndrome, and Congress just allocated $1.15 billion to research this, which is almost 100 times as much as last year.”
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How Me/cfs Might Affect Your Ability To Exercise
“One of the key features of ME/CFS is what we call post-exertional malaise ,” Dr. Holladay says. “That usually means when people with ME/CFS overdo it, they ‘crash,’ or in other words, their symptoms get worse the next day or over the next several days.”
Some of the early signs of crashing are increased brain fog, fatigue, pain and sensitivity to light and sound. “Sometimes if patients pay attention to early signs of crashing, they can lie down and avoid making themselves worse, but they don’t necessarily always have warning signs that will tell them before they’ve gone too far,” Dr. Holladay explains.
That’s why it’s so important for people with ME/CFS to learn their own boundaries and work with a doctor who can help them develop goals based on their specific needs and limitations.
“Although people with ME/CFS have notable limitations, there is a huge range of severity in illness,” Dr. Holladay explains. “People at the better end may be able to work part-time or even full-time, albeit with limitations. On the other end, a patient may be so ill that they cannot leave their bed and must be isolated from excessive light, interactions with other people, etc.”
Working out with ME/CFS is a delicate balance of doing the appropriate kind of exercise and doing it only when you’re feeling healthy enough.
“Those who are severely ill may not be able to safely do any regular exercise,” Dr. Holladay says.
Tip
What Is Chronic Fatigue Syndrome
Chronic fatigue syndrome , also known as myalgic encephalomyelitis , is a complex, chronic neurological condition affecting the brain, muscles, digestive system, immune system, cardiac system and other areas of the body .
ME/CFS is characterised by post-exertional malaise , which describes the worsening of symptoms after physical or mental activity. Some people might experience PEM after going on a walk, while those with a more severe illness might trigger it by simply brushing their teeth or reading a sentence. Once triggered, PEM may persist for days, weeks or months .
Note that PEM may not occur immediately after exertion and can start 24 hours later in some cases .
The cause of ME/CFS is not yet understood and there is no cure .
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You Look Good Today You Must Be Feeling Better
Looks can be deceiving, trust me.
I know this comment is often said with the intent of being a compliment but sometimes it can be reflected as a lack of understanding.
Living with chronic fatigue for a while has meant that Ive become better at being able to conceal how its making me feel.
I know that a lot of the things Ive listed here are said with the best of intentions and people are merely just trying to empathise and perhaps, trying to understand in their own way.
Whilst empathy can go a long way, what really makes a difference is when someone asks me to explain my condition and how it affects me, when they say they want to gain a little more understanding. Whilst I dont always have the energy to comb through the finer details of how CFS affects my life, I will always try to explain as best as I can.
Id rather people ask questions than avoiding them and then, perhaps, making unnecessary assumptions which lead to all of the above being said.
Chronic fatigue can be lonely at times, especially if I miss out on doing things because of how Im feeling. So, having people around me who are willing to understand is invaluable.
Not everyone knows what to do or what to say but I hope that posts like this can help to shift social attitudes and contribute to more awareness being raised about chronic illnesses.
Elin x
