What Is It Like Living With Me/cfs
The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are housebound or bedbound as a result of their illness. For many, there is often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends, and the public to understand the challenges of the disease.
We know its so important to share personal experiences to increase understanding of ME/CFS. Visit our Humans of M.E. story archive to read and share your stories of ME/CFS.
It feels like I always have the flu, only much worse. It feels like the world is always moving, and I cant find my bearings.Rob P.
When my symptoms first occurred, I was diagnosed with the flu during June, July, and August during off-flu season. Doctors suspected that I was a hypochondriac.Conella B.
Sometimes it feels as if my body is shutting down on me. I think about going to the emergency room, not even able to make it to the car if I decide to go. I rarely decide to anyway, because every time I ever have gone for my invisible illnesses, they have never once been able to help me in any way.Kelly S.
Depression Stress And Anxiety
Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.
Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patients psychological condition, they may recommend seeing a mental health professional.
Some people with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies . These can reduce stress and anxiety, and promote a sense of well-being.
Severity Of Chronic Fatigue Syndrome Symptoms
Symptoms vary widely in severity and people may have some symptoms more severely than others. However, the following definitions are provided by NICE to provide a guide to the level of impact of symptoms on everyday functioning:
Features of mild chronic fatigue syndromeThese include:
- You are able to care for yourself and do some light domestic tasks but may have difficulties with mobility.
- You are usually still able to work or attend education, but to do this you have probably stopped all leisure and social pursuits.
- You often have reduced hours, take days off and use the weekend to cope with the rest of the week.
Features of moderate chronic fatigue syndromeThese include:
- You have reduced mobility and are restricted in all activities of daily living.
- However you may have peaks and troughs in your level of symptoms and ability to do activities.
- You have usually stopped work or education, and need rest periods, often resting in the afternoon for one or two hours.
- Your sleep at night is generally of poor quality and disturbed.
Features of severe chronic fatigue syndromeThese include:
- You are unable to do any activity for yourself, or you can carry out minimal daily tasks only .
- You have severe cognitive difficulties and may depend on a wheelchair for mobility.
- You are often unable to leave the house or you have a severe and prolonged after-effect if you do so.
- You may also spend most of your time in bed and are often extremely sensitive to light and sound.
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What Causes Chronic Fatigue Syndrome
The cause of chronic fatigue syndrome is not known. There are various theories but none has been proved. A popular theory is that a viral infection may trigger the condition. It is well known that tiredness is a symptom that can persist for a short time following certain viral infections. For example, infection with the glandular fever virus or the influenza virus can cause fatigue for several weeks after other symptoms have gone. However, most people recover within a few weeks from the tiredness that follows known viral infections.
Even if a viral infection is a trigger of CFS, it is not clear why symptoms persist when there is no evidence of persisting infection. Also, the symptoms of many people with CFS do not start with a viral infection.
Factors that are thought to contribute to some people developing CFS include:
- Inherited genetic susceptibility .
- Exhaustion and mental stress.
- A traumatic event such as bereavement, divorce or redundancy.
It is hoped that research will clarify the cause of CFS in the future.
How Is Chronic Fatigue Syndrome Treated
Treatment is determined by your healthcare provider and based on:
- Your overall health and medical history
- Extent of the condition
- Your tolerance for specific medicines, procedures, or therapies
- Expectations for the course of the condition
- Your opinion or preference
- Medicine, including corticosteroids, antidepressants, and others
- Light-intensity aerobic exercise
- Dietary supplements and herbal preparations
- Psychotherapy and supportive counseling
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Managing Symptoms Of Chronic Fatigue
Managing the symptoms of chronic fatigue will in most cases require support from a medical professional. At Psymplicity Healthcare, our experts can suggest several helpful therapies to support you. Depending on your CFS symptoms, these therapies may include:
- Cognitive behavioural therapy : This therapy can help you identify factors that exacerbate fatigue and other CFS symptoms. With CBT, you can learn how to adapt your day-to-day activities to manage your CFS better, and it can help you to reframe any negative beliefs around your condition.
- Graded exercise therapy : An exercise programme can help you adjust to carrying out appropriate physical activity. Vigorous aerobic exercise is often prescribed for other chronic conditions, but with CFS, a structured programme aimed at gradually raising your heart rate is more effective.
While these are the most common therapeutic techniques used for people with ME/CFS, depending on your condition, alternative therapies may be suggested by health professionals.
If you would like to find out whether you should get a chronic fatigue diagnosis, or you need support managing your CFS symptoms, get in touch with our specialists at Psymplicity Healthcare who can provide you with a personalised treatment plan.
What Are The Symptoms Of Myalgic Encephalomyelitis/chronic Fatigue Syndrome
For many people, the symptoms of ME/CFS resemble other diseases, like influenza. Symptoms may come and go over time and may increase or decrease in severity. ME/CFS symptoms vary widely from person to person.
Many of the symptoms of ME/CFS make daily life difficult. These symptoms include:
- Severe fatigue lasting at least 6 months that does not improve with rest or sleep
- Difficulty sleeping
- Flu-like symptoms, including swollen lymph nodes , headaches, and joint pain
- Cognitive difficulties, including attention and memory problems
- Muscle aches
Less common symptoms of ME/CFS include:
- Problems with vision
- Irritable bowel, an intestinal condition causing painful bloating, gas, constipation and diarrhea
- Psychological issues, including mood swings, irritability and anxiety
- Tingling or numbness in the feet, hands or face
For many people, ME/CFS symptoms get worse following physical exercise or strenuous mental exertion. In some cases, orthostatic intolerance causes dizziness, weakness, and fainting.
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Other Chronic Fatigue Syndrome Symptoms
Other symptoms that may be associated with CFS/ME include:
- Dizziness, palpitations, fainting, nausea on standing or sitting upright from a lying position.
- Increased sensitivity to temperature, causing increased sweating, chills, hot flushes or feeling very cold.
- Twitching and other abnormal uncontrolled body movements.
- Flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches.
- Intolerance to alcohol, or to certain foods or chemicals.
- Increased sensitivities, including to light, sound, touch, taste and smell.
- Pain, including pain on touch, muscle pain, headaches, eye pain, tummy pain, or joint pain.
General Exercise Tips For People With Chronic Fatigue Syndrome
Be guided by your doctor or specialist, but general suggestions include:
- Experiment to find the type of exercise that works best for you. Choose from a range of gentle activities such as stretching, yoga, tai chi, walking and light weight training.
- Keep an activity diary so you have a long-term picture of your performance levels and factors that might impact on your symptoms.
- Stop the physical activity well before you feel any symptom flare. Pacing yourself is very important.
- Remember that the amount of exercise you can do will change from one day to the next.
- Listen to your body if you dont feel up to exercising on a particular day, dont.
- Find out as much as you can about your ME/CFS. Make sure you consult with health professionals who fully understand ME/CFS as a ‘real’ biomedical condition.
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Symptoms Of Chronic Fatigue Syndrome
The main feature of ME/CFS is a type of exhaustion known as post-exertional malaise, crash or payback. This means having flu-like symptoms after exercise and not having enough energy for daily activities.
Research shows that people with ME/CFS have a different physiological response to activity or exercise from other people. This includes abnormal exhaustion after any form of exertion, and a worsening of other symptoms. The response may be delayed, perhaps after 24 hours. Depending on the amount and type of exercise, it may result in post-exertional malaise for a few days, or serious relapses lasting weeks, months or even years.
- problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling
- disrupted sleep
- sore throat, tender lymph nodes and a flu-like feeling
- inability to cope with temperature changes.
Will I Still Be Able To Work With Me/cfs
Research shows that about half of people with ME/CFS work part-time or full-time jobs. For some people with ME/CFS, the ability to work is possible thanks to a supportive employer and certain workplace accommodations, including a flexible schedule, a quiet comfortable place to rest, and memory aids.
But, if you can’t work because of ME/CFS, you may be eligible for Social Security benefits. Learn more about applying for disability through the Social Security Administration.
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Management Of Chronic Fatigue Syndrome Symptoms
Rest and sleep in CFSRest periods in the daily routine are part of management strategies for all people with chronic fatigue syndrome. Relaxation techniques at the beginning of each rest period can be helpful. Try to balance the need for rest during the day against how you are sleeping at night. Introduce changes to your sleep pattern gradually.
Physical functioning and mobility problems in CFSStrategies to help maintain and prevent deterioration of your physical function and mobility need to be carried out in small amounts and spread out throughout the day. Strategies should include joint mobility, muscle flexibility, balance, postural and positional support, muscle function, bone health and cardiovascular health.
Care and support plans in relation to physical functioning and mobility may include bed mobility, moving from lying to sitting to standing, transferring from bed to chair, using mobility aids, walking, joint mobility, muscle stretching, muscle strength, balance, and going up and down stairs.
People with CFS may experience intolerance of changing position, such as when first standing up. This may include postural orthostatic tachycardia syndrome . You may need to be refered to a specialist if your symptoms are severe or worsening, or there are concerns that another condition may be the cause.
Pain in CFSChronic pain is commonly associated with CFS. You may need referral to specialist pain services if appropriate.
How Will Me/cfs Affect My Quality Of Life
Not everyone will experience the same symptoms so itâs important not to compare people with ME/CFS. People with ME/CFS can have very different experiences of the condition and how long their symptoms last.
The impact of symptoms can be:
As symptoms change over time so does the impact they have on peopleâs lives.
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Chronic Fatigue Syndrome Diagnosis
As more research is done on ME/CFS, the criteria for diagnosis continue to be updated. There are a few possible sets of criteria physicians may choose to use in their diagnosis. However, most of these criteria sets require the following:
- Post-exertional malaise , or worsened fatigue after performing usual activities
- Unrefreshing sleep or other sleep problems
- Widespread pain or discomfort, such as muscle or joint pain or headache
- Two or more types of neurological or cognitive dysfunction, such as impaired memory and concentration
- Symptoms lasting longer than six months
There is no chronic fatigue syndrome test to verify whether or not a person has the syndrome. Instead, physicians take a history of patient symptoms, including family history. They often conduct tests to rule out the possibility of other diseases, including urine and blood tests. Physicians may also refer patients to specialists to ensure other diagnoses are ruled out.
Experts note that patients may be diagnosed with both ME/CFS and an additional source of chronic fatigue. Some comorbidities of ME/CFS include:
- Allergies and sensitivities
I Don’t Have Insurance How Can The Affordable Care Act Help Me
If you’re uninsured or have been denied coverage in the past for ME/CFS, the Health Insurance Marketplace may be able to provide you with access to affordable coverage. With health insurance plans in the Marketplace, you can no longer be refused coverage just because you have a pre-existing health condition. Medicaid and the Children’s Health Insurance Program also can’t refuse to cover you or charge you more because of a health condition. They also can’t charge women more than men. Learn more about the Affordable Care Act and the Health Insurance Marketplace at Healthcare.gov.
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How Is Me/cfs Treated
There is currently no FDA-approved treatment or drug for ME/CFS. As neither a cause nor cure for ME/CFS has been identified, treatment is directed at relieving symptoms. However, there are interventions and symptom-reduction strategies that you can use to significantly improve patients quality of life.
Learn more in our Patient Resources section.
Studies show that less than 9-16 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker thats conclusive. Getting a definitive diagnosis often takes months or even years.
Providing compassionate and effective care for patients with ME/CFS can be challenging, like many other multisystemic chronic conditions. Patients and their providers must be partners with open lines of communication in order to effectively manage this illness. For medical providers seeking to provide better care for ME/CFS patients, reference our educational materials at our Medical Provider Resources page.
Viral And Other Infections
The term post-viral fatigue syndrome is used to describe CFS-like symptoms that occur after a viral infection. A recent review found Epstein-Barr virus antibody activity to be higher in patients with CFS, and that a subset of patients with CFS were likely to have increased EBV activity compared to controls. Viral infection is a significant risk factor for CFS, with one study finding 22% of people with EBV experience fatigue six months later, and 9% having strictly defined CFS. A systematic review found that fatigue severity was the main predictor of prognosis in CFS, and did not identify psychological factors linked to prognosis. One review found risk factors for developing CFS after mononucleosis, dengue fever or the bacterial infection Q-fever include longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The same review found biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue, but not CFS, however these findings are not generally accepted due to the use of the Oxford criteria in selecting patients. The CDC does not recognize attribution of symptoms as a risk factor.
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Who Develops Chronic Fatigue Syndrome
Chronic fatigue syndrome can affect anyone. It is estimated that CFS affects an average of between one and five people in every 1,000 in the UK. The true figure may be higher because some people with CFS/ME are not diagnosed.
It is about three times as common in women as in men. The most common age for it to develop sometime between the early twenties to mid-forties. In children the most common age for it to develop is 13-15 years but it can develop at an earlier age.
Problems With Thinking Memory And Concentration
If you have ME/CFS, it’s also common to have:
- problems remembering certain words, names or numbers
- difficulty concentrating or difficulty focusing on more than one thing at a time
- problems remembering things that happened recently
- being slow to speak or react to things
These problems are sometimes described “brain fog”.
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How Do I Know If I Have Chronic Fatigue Syndrome
According to the National Institute for Health and Care Excellence, CFS/ME should only be diagnosed in all of these cases:
- It hasnt been a lifelong problem
- Symptoms are recurring
- It is unexplained by other conditions
- It reduces the ability to carry out activity
- It gets worse after exercise
The health watchdog paused a long-awaited update to ME treatment guidelines in August 2021.
NICE said it needed more time to talk with patient groups and professionals to ensure the advice is supported.
An earlier draft shelved one controversial current recommendation of graded exercise therapy.
What Are The Symptoms Of Chronic Fatigue Syndrome
The onset of chronic fatigue syndrome symptoms can be fairly sudden , or more gradual. CFS should be suspected if the following symptoms are not explained by any other condition, and persist for a minimum of six weeks in adults, or four weeks in children and young people:
- Extreme tiredness that is worsened by activity, but is not caused by excessive exertion, and is not significantly relieved by rest.
- Post-exertional malaise : feeling unwell with no energy after activities, with a worsening of symptoms that:
- Often doesn’t start until hours or days after the activity.
- Is much greater that you would expect for that particular activity.
- Has a prolonged recovery time that may last hours, days, weeks or longer.
- Difficulty concentrating or multitasking.
- Inability to engage fully in work, educational, social or personal activities.
The diagnosis can only be confirmed after three months of persistent symptoms, but only if the symptoms cannot be explained by any other condition.
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