What Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome is persistent and crippling fatigue lasting 6 months or longer. People living with ME/CFS often experience other symptoms, like unrefreshing sleep and muscle aches. The condition is also sometimes called chronic fatigue syndrome.
Doctors do not know what causes ME/CFS, and there is no cure. You may be able to manage symptoms with cognitive-behavioral therapy, exercise, and medications, like antidepressants and sleep aids. The goal of treatment is to make symptoms as manageable as possible to increase your quality of life.
How Chronic Fatigue Syndrome Is Diagnosed
The path to a diagnosis of chronic fatigue syndrome can be frustrating. The condition is characterized by its symptoms and there is no single test that can confirm it. Complicating the issue even further is the fact that many CFS symptoms mirror those of other illnesses, including heart, lung, thyroid, and even psychiatric disorders.
As a disease, chronic fatigue syndrome is diagnosed when other possible explanations for how you are feeling have been explored and excluded.
The condition is also called myalgic encephalomyelitis or systemic exertion intolerance disease .
Uncovering The Mystery Of Cfs
Some people may be genetically predisposed to the CFS, plus viruses and stress appear to play a role. A weakened or compromised immune system and hormonal imbalances have been found in conjunction with CFS diagnoses, so they may have a part in its development too.
Because CFS has been linked to several viral infections in the past, it is thought that it could be more of an end-stage symptom than a unique condition of its own. Individuals with severe infections seem to be at greater risk for developing CFS than others. However, there are also cases of CFS reported in which no viral infection has ever been identified, so it continues to be a mystery.
What doctors and scientists have been able to identify are risk factors. Along with viral infections, there seem to be certain factors that up your chances of getting CFS.
It most commonly develops later in life between the ages of 40 and 50.
Women are more likely to be diagnosed than men.
Allergies, stress, and environmental factors also seem to increase your risk.
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Diagnosing Chronic Fatigue Syndrome
As this is a rather eccentric disease, physicians must use the elimination process to make a diagnosis. And when they reach a working diagnosis, it means the most probable underlying disease has been identified. The doctors then, give the corresponding medications accordingly. But if the condition fails to improve despite the treatments given, the diagnosis has to be reconsidered.
Its Hiding In There Somewhere
Symptoms of CFS vary for each person and according to severity. If you suspect that you have CFS, understanding all the potential symptoms is the best approach. This way you can bring them to your doctors attention and get tests to rule out other conditions.
It may take time to get an official diagnosis, but you will be on the right path and can address each symptom as it occurs.
Fatigue is obviously the most common symptom, but it must have lasted for 6 months at least before it can be considered CFS. In addition to this continued fatigue, you must also have at least four other symptoms.
The possible symptoms include:
Rest does not alleviate the fatigue
Loss of memory or poor concentration
Unrefreshed feeling each time you wake up
Frequent sore throat
Swollen or tender lymph nodes
Extreme fatigue after physical and mental activities
CFS can also affect people in cycles, meaning some of the time they feel perfectly fine. There are periods of normality followed by periods of extreme fatigue, which can be confusing and makes diagnosis difficult.
Sometimes symptoms can disappear completely , but it is possible for them to come back.
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How Do You Get A Chronic Fatigue Syndrome Diagnosis
Are you wondering how you get a chronic fatigue syndrome diagnosis? Maybe youre worried that you might have the condition yourself or that a loved one does. Or you might be curious about how doctors identify and treat chronic fatigue syndrome.
If so, youre in luck, because the answer is fairly straightforward if not exactly simple. So lets talk about what exactly chronic fatigue syndrome is, how you get a chronic fatigue syndrome diagnosis, and how the condition is treated.
Articles On Chronic Fatigue Syndrome
Thereâs no simple blood test or X-ray to diagnose chronic fatigue syndrome â also known as myalgic encephalomyelitis . And many of the symptoms of the illness — deep tiredness, unrelieved by rest or sleep, feeling worse after physical or mental exertion, trouble concentrating, feeling worse after standing and remaining on oneâs feet and other symptoms– are also seen in other conditions, too, making the diagnosis of ME/CFS more difficult.
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Guidelines For Diagnosing Me/cfs
Guidelines from the National Institute for Health and Care Excellence say doctors should consider diagnosing ME/CFS if a patient has extreme tiredness that cannot be explained by other causes and the tiredness:
- started recently, has lasted a long time, or keeps coming back
- means you cannot do the things you used to do
- gets worse after activity or gentle exercise, such as a short walk
You must also have some of these symptoms:
- problems sleeping, such as insomnia
- muscle or joint pain
- fast or irregular heartbeats
- doing exercise or concentrating makes your symptoms worse
The GP should consult a specialist if they’re unsure about the diagnosis or if you have severe symptoms.
If a child or young person under 18 has symptoms of possible ME/CFS, they may be referred to a paediatrician.
As the symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own, a diagnosis of ME/CFS may be considered if you do not get better as quickly as expected.
The diagnosis should be confirmed by a doctor after other conditions have been ruled out, and if your symptoms have lasted at least 3 months.
Page last reviewed: 29 October 2021 Next review due: 29 October 2024
Where Can I Get Support
Even in its mildest form, chronic fatigue can have a significant emotional and financial impact on your life. A lack of understanding and awareness about CFS/ME means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
People need wider support in order to continue to manage aspects of their life. Information on entitlements to welfare benefits, accessing health and social care and others sources of support for patients and carers are available from Action for M.E.
Action for M.E. has a number of booklets that may be useful for people living with CFS/ME, their families and their health professionals. They also offer resources and services for children and young people affected by chronic fatigue and their families.
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How Is Cfs Treated
Theres currently no specific cure for CFS.
Each person has different symptoms and therefore may require different types of treatment to manage the disorder and relieve their symptoms.
Work with your team of healthcare providers to create the best treatment plan for you. They can go over the possible benefits and side effects of the therapies with you.
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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What Can I Do To Cope With Me/cfs
Talking about your feelings with a friend or family member can help. Sometimes it also helps to talk with people who are going through the same thing. Consider joining an ME/CFS support group. See the “ME/CFS Organizations” section at the end of this fact sheet for a list of organizations that offer additional information on ME/CFS and can help you find ME/CFS support groups.
Homeopathy In Chronic Fatigue Syndrome
Due to the limitations of traditional medicine and techniques, alternative medicine capitalizes on this situation. This leads to the development of several unconventional methods. As a result of patient testimonials, most of them are helpful in improving the patient’s condition.
Holistic therapies such as homeopathy, coupled with herbal and nutritional supplements are said to work best in a patient with chronic fatigue syndrome. When it comes to chronic fatigue syndrome, recovery is somehow unsatisfactory with traditional medicines, and so some patients are considering alternative healing instead.
But whichever treatment method is chosen, only one thing should be remembered at all times. All the techniques performed and the drugs taken have to be fully monitored by a qualified health care professional. It is not correct to self-heal, as chronic fatigue syndrome can be disabling.
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How Is Chronic Fatigue Syndrome Diagnosed Unfortunately The Only Way To Diagnose Cfs Is To Rule Out All Other Possible Causes Of Your Fatigue
Fatigue is one of the most poorly managed and confusing conditions in all of medicine. And part of the reason why is that no one has decided what fatigue really is.
For example, your doctor may have diagnosed you with:
- chronic fatigue syndrome ,
- systemic exertional intolerance disorder
Even the names for your fatigue are confusing!
Can You Have Both Chronic Fatigue Syndrome And Fibromyalgia
You can have both chronic fatigue syndrome and fibromyalgia. In fact, many people do.
These conditions are considered cousins, of a sort. They belong to the same family of illnesses, which is called central sensitivity syndromes.
The symptoms are extremely similar. So, it can be difficult to tell if you have just one or both of these conditions.
Until theres better diagnostic testing, it may sometimes be impossible to tell if you have both. It may never even be clear which one you have, either, depending on your specific mix of symptoms.
Fortunately, the treatments are similar. So, you may get the right treatments even if youre not correctly diagnosed.
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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.
How To Diagnose Chronic Fatigue Syndrome
Virginia Gewin gets to grips with a fundamental problem in chronic fatigue syndrome research how to know it when you see it.
After 25 years living with chronic fatigue syndrome , researcher Leonard Jason maintains a stalwart professional focus on improving the diagnosis of the disease. That requires doggedly analysing cases and symptoms to refine the criteria necessary for an appropriate definition of what constitutes a case of CFS-ME. Yet ongoing controversy over the criteria illustrates how much there is still to learn about it.
For example, in 2011 Jason and his colleagues showed that the most commonly used criteria identified only 79% of patients with CFS-ME. These findings underpin Jasons repeated calls for government bodies to test any proposed disease criteria using patient data and his continued dismay that they do not.
One problem is that people who also have other conditions, such as mood disorders, should be omitted when trying to define diagnostic criteria for CFS-ME. The goal is to hone the patient and disease criteria to their very essence: only then will researchers be able to tease out the biological mechanisms specific to this disease and find potentially effective treatments.
His work is slow but prodding, securing the data needed to understand the disease. And we all know its the tortoise that wins the race in the long run.
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Diagnosing Chronic Fatigue Syndrome And Fibromyalgia
ME/CFS and fibromyalgia are both diagnoses of exclusion, which means:
- They dont have objective lab or imaging tests.
- Other possible conditions must be ruled out.
- Multiple factors must be interpreted to come up with an answer.
This process can take a long time. You may have to push your healthcare provider to keep searching or to give you a referral.
Alternative And Holistic Therapies
Alternative or holistic therapies may provide some comfort to those with a long standing illnesses but be cautious of any method that claims to offer a cure for chronic fatigue. If the therapy has not been published in respected peer-reviewed journal or is expensive you should talk to your GP before trying it. Until further research is done, no-one can be certain whether someone with CFS/ME might benefit from alternative therapies.
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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.
Identifying Chronic Fatigue Symptoms
Just like other illnesses, chronic fatigue also has its own symptoms.
The primary symptom of chronic fatigue is persistent tiredness, which could last up to six months. About 25% of chronic fatigue sufferers experience this symptom.
This tiredness is very different from the symptoms one feels after a stressful day at work. The fatigue is severe and weakening, and cannot be relieved with even the shortest sleep. In fact, most physical or mental activities would worsen the condition.
Sleep deprivation is another symptom of chronic fatigue. While they may be able to sleep for the normal hours, when they wake up, they won’t feel revitalized at all. A person’s sleep becomes nothing more than a routine with no physical benefits.
Aside from this, the chronic fatigue symptoms list includes cognitive dysfunction and postexertional malaise.
Symptoms of cognitive dysfunction include memory loss and difficulty concentrating.
On the other hand, postexertional malaise means extreme exhaustion after even a simple mental or physical exercise.
Muscle and joint pain are also likely to occur. However, swelling and redness are rarely present. Nonetheless, its presence can be alarming enough to call a doctor.
In addition to all of this, the patient will experience multiple episodes of headaches as well. Lymph nodes and the cervix area may also become tender. A sore throat may occur occasionally as well.
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Your Next Steps Towards A Proper Diagnosis
If your diagnosis came before 2015, I encourage you to book a follow-up appointment with your physician. Go through the new diagnostic procedures together. Make note of whether you still fit the diagnostic criteria.
If you no longer fit the diagnostic picture, be assertive. Ask your doctor to perform more testing that can help you identify the root cause of your fatigue. If your lab tests still come back within normal ranges, its time to find a knowledgeable functional medicine practitioner.
Now, I want to hear from you!
Did the change in diagnostic criteria affect your diagnosis?
Do you really have CFS?