Compliance And Exercise Performance
All subjects, including the most deconditioned patients, completed the 25-min exercise protocol, which was individually adjusted to attain the same relative exercise intensity of 70% of age-predicted maximal heart rate . Although controls and CFS patients exercised at the same relative intensity , absolute work rate for all patients and both patient subgroups was significantly lower, F = 15.79, p< .001, and their RPE was significantly higher compared to controls, F = 13.28, p< .001. There were no overall group differences for age or exercise blood pressure, but the subgroup analysis revealed that the low SF group had significantly lower resting blood pressure than controls . All patients and specifically the high SF subgroup had higher body mass index than controls, F = 4.62, p< .05.
Getting Older And Me/cfs
There is very little information on getting older and ME/CFS, however people can develop ME/CFS at any age. Additionally, all of the strategies such as pacing to reduce PEM and managing symptoms still apply. As people age, other problems with their health may also arise, so discussing any new symptoms with their doctor important.
Severe Or Very Severe Cfs/me
If you have severe or very severe CFS/ME, you will need more frequent reviews and increased support and care. You should also be referred:
- To a physiotherapist or occupational therapist working in an CFS specialist team for support on developing energy management plans.
- To a dietician with a special interest in CFS.
The process and pace of any CBT should be adjusted to meet your needs. This might include shorter, less frequent sessions and longer-term goals.
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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.
What Is The Outlook
The long-term outlook for chronic fatigue syndrome varies from person to person. Although some people recover or have a long period of remission, many will need to adapt to living with /CFS. The outlook is better in children and young people than in adults.
Chronic fatigue syndrome affects everyone differently and its impact varies widely. For some people symptoms still allow them to carry out some activities, whereas for others they cause severe impacts on different aspects of the lives of people with CFS and their families and carers, including activities of daily living, family life, social life, emotional well-being, work and education.
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Can Lyme Disease Have Flare
In short, yes Lyme disease generally comes with flare-ups. One initial flare-up of symptoms can occur at the beginning of treatment and is referred to as a Herxheimer reaction. This reaction occurs when the dying bacteria releases certain toxin-like substances that cause symptoms to reappear.
Other types of flare-ups can occur long after treatment, and the existing symptoms that a person experiences with Lyme disease may recur or worsen. When flare-ups occur in someone with chronic Lyme disease, its typically because they havent sought treatment for more than a year after an initial infection, or because they had been previously prescribed steroids prior to getting diagnosed with Lyme disease.
Image by Ayo Ogunseinde on a: Can you have a relapse of Lyme disease?
Pacing Activity For People With Me/cfs
Pacing, or keeping within your available energy, is a self-management strategy to help people with ME/CFS make sure that they dont overdo activity or exercise. It reduces the likelihood of triggering PEM and can help reduce symptoms. Pacing is not a cure for ME/CFS and does not treat the underlying, physical cause of the disease.
The goal of pacing is for activity to be sustainable, so that the person can have some stability in their symptoms and what they can do each day. Pacing should be used in conjunction with rest.
The most challenging aspect of pacing is that PEM is very often delayed by as much as 24-48 hours, which can make it difficult to recognise when youve done too much. Using tools like an activity diary or heart rate monitor help you learn about your body and how much activity you can safely tolerate.
Suggestions on how to pace yourself include:
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Key Points About Chronic Fatigue Syndrome
- Chronic fatigue syndrome is characterized by profound tiredness.
- Symptoms often worsen with physical or mental activity.
- In addition to severe fatigue, symptoms include light sensitivity, headache, muscle and joint pain, difficulty concentrating, mood swings, and depression.
- Treatments may include medicines, exercise, supplements, and counseling.
When To Call A 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.
- Severe headache that does not improve with home treatments.
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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.
Keeping The Right Things On Hand
What things do you need to get through the day? Make a list, starting with the most obvious things and then moving onto those that are particular to your needs when youre really in bad shape. The first item? Food.
Extra Canned Goods and Frozen Foods
Make sure theres enough food to get your household for several days. Try to keep simple meals on hand that you or someone else can quickly throw together. Non-perishable items are greatyou can put them in an out-of-the-way place and leave them for when theyre needed.
Lots of Specialty Foods
If you have food allergies or sensitivities, keeping the right foods well-stocked is even more important. It can be extra hard for someone else to shop for you. Its a good idea to look into grocery delivery services so you have an emergency back-up plan. The last thing you want to do is make yourself feel worse because of what you eat!
Healthy Snacks
Potato chips and candy are unlikely to give your body what it needs to come out of a flare! However, when you cant get to the grocery store, its hard to keep yourself in fresh fruits and vegetables to nibble on. You may want to keep things like nuts and dried fruit on hand so you can get some nutritional value from snacks.
Are cooking and grocery shopping hard for you, even on good days? Consult shopping strategies and cooking tips for ways to ease the strain.
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Other Chronic Fatigue Syndrome Symptoms:
Because ME/CFS is a multi-system illness, it can actually create a truly astounding set of symptoms. So whilst some regard the above list to be the core Chronic Fatigue Syndrome symptoms, there are actually many other symptoms. These include but are not limited to:
- Pain including muscle aches, migraines and headaches
- Gastrointestinal disturbance including diarrhoea, constipation and other difficulties
- Low grade fever
- Dry or sore eyes, sometimes described as pain behind or inside the eyes
- Need to urinate, often along with unquenchable thirst
- Muscle twitching described by some people as jolts or flashes
- Chills and cold hands or feet
- Strange smell sensations often described as ammonium
- Allodynia which is when your skin hurts to be touched
- Paresthesia which are sensations such as itching, numbness, tingling, burning or a feeling that something is crawling on you
- Profuse sweating
- Painful or swollen lymph nodes
- Temperature or weather sensitivity
- Canker sores and infections in the mouth
How Is Myasthenia Gravis Diagnosed
Your doctor can diagnose myasthenia gravis based on your symptoms and certain tests. During the physical exam, your doctor will ask about your medical history and symptoms.
A common way to diagnose myasthenia gravis is to test how you respond to certain medicines. Muscle weakness often dramatically improves for a brief time when you are given an anticholinesterase medicine. If you respond to the medicine, it confirms myasthenia gravis.
Other tests that may be done include:
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Blood tests. These tests look for antibodies that may be present in people with myasthenia gravis.
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Genetic tests. These tests are done to check for conditions that run in families.
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Nerve conduction studies. A test called repetitive nerve stimulation is used to diagnose myasthenia gravis.
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Electromyogram . A test that measures the electrical activity of a muscle. An EMG can detect abnormal electrical muscle activity due to diseases and neuromuscular conditions.
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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
British Columbia Specific Information
Many Canadians are affected by complex chronic diseases . CCDs are illnesses that last a long time, require treatment and management, and often do not get better on their own. Fibromyalgia , Myalgic Encephalomyelitis , which is also called Chronic Fatigue Syndrome , and Chronic Lyme Disease are examples of complex chronic diseases.
To learn more about fibromyalgia, myalgic encephalomyelitis or chronic Lyme-like disease, visit HealthLinkBCs Complex Chronic Diseases health feature.
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Chronic Fatigue Syndrome Symptom Generation
When you look at the huge list of symptoms in Chronic Fatigue Syndrome, you can see that every bodily system is affected. Such a large range of symptoms often leads to unkind and unhelpful accusations that the patient is catastrophising, malingering or is a hypochondriac or has some kind of mental illness. This of course couldn’t be further from the truth – ME/CFS is a real physical illness!
Not only are the symptoms of ME/CFS real, but this large range of symptoms is actually the biggest clue as to the root cause of the illness.
So what connects all the bodily systems? The CENTRAL nervous system. More specifically, it is the Autonomic Nervous System that controls the various bodily systems.
Whilst the WHO identified ME/CFS as a neurological condition many years ago, the mechanisms that lead to the symptoms are still poorly understood by the wider medical community.
In the book CFS Unravelled I outline the explanation of ANS dysfunction as the root cause of the illness and outline how this explains the variation in illness onset, symptom variation, symptom generation and recovery. The book also outlines a framework for recovery and explains how this is experienced by many people despite severe or long-term illness.
There is no single magic cure, but recovery is possible and the key is to understand how the illness works so you can tailor a personal recovery action plan.
Linear Relationships Between Patient Cytokine Responses And Symptoms Of Fatigue And Pain
At baseline, the cytokine that had the strongest association with higher baseline fatigue in CFS patients was higher IL-6 . Higher baseline IL-6 was also associated with higher reported levels of physical fatigue at 48 h . Predictive relationships between changes in cytokines/ligands at 8 h post-exercise and SF severity at 48 h were also examined in all CFS patients using linear regression. Greater increases in IL-6 and in CD40L predicted greater increases in physical fatigue, accounting for 43% and 31% of the variance in fatigue increases, respectively , and increases in IL-6 also accounted for 29% of the variance in increased pain . However, although the relationship with CD40L was robust, the relationships between IL-6 and both physical fatigue and pain increases were strongly influenced by the patient showing the largest IL-6 increase. When reexamined after removal of that individual, these relationships were no longer significant . Still, when considered together with the associations between higher baseline IL-6 and greater fatigue, these observations encourage continued research attention to IL-6 as well as CD40L in relation to SF.
Relationship between increases in IL-6 from baseline to 8 h post-exercise and increases from baseline to 8 h post-exercise in CD40L as they relate to increases in physical fatigue from baseline to 48 h post-exercise in CFS patients.
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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”.
Psychological Me/cfs Symptoms List
Patients are often told that they have depression or anxiety and that there is nothing wrong with them physically. However, whilst they may be experiencing depressive thoughts and anxiety, their CFS symptoms are real of course. So unfortunately, sometimes their symptoms are misattributed to a mental illness when in fact they are experiencing a real physical illness.
This however does not mean that people experiencing ME/CFS dont have co-morbid mental illness, they often do. So whilst the list of physical CFS symptoms is extensive, there can also be a range of psychological symptoms in CFS. This sometimes leads to other mental health diagnosis.
Here are some of the common psychological symptoms experienced:
- emotional flattening
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The Danger Of Misattribution Of Chronic Fatigue Syndrome Symptoms
With so many symptoms and so many co-morbid diagnoses, patients often experience diagnosis fatigue where they no longer get their symptoms investigated and simply see them as just another Chronic Fatigue Syndrome Symptom.
So whilst many people with Chronic Fatigue Syndrome stop panicking every time they get symptoms that look like some other major and serious disease, it is all too easy to become complacent.
Its absolutely essential that any worsening of symptoms or new symptoms be reported to your doctor so that these can be appropriately diagnosed and treated where possible.
But when you realise that CFS affects every major system of the body, including the nervous system, endocrine system, digestive system, cardiovascular system and even your cellular functions and metabolism, then its easy to see how so many symptoms and different illnesses can occur.
What Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome is a complex and disabling disease. It has been classified as a neurological disorder by the World Health Organization, though it affects many parts of the body, including the brain and muscles, digestive, immune and cardiac systems.
The term myalgic encephalomyelitis means pain in the muscles, and inflammation in the brain and spinal cord. Scientists are starting to understand some of the biological changes in the bodies of people with ME/CFS, although they have not yet found how to prevent, or cure it.
Research has found that ME/CFS is associated with problems involving:
- The bodys ability to produce energy at a cellular level
- Immune, neurological and hormonal systems
- Blood pressure and heart rate regulation
- Cognition how quickly information is processed
ME/CFS affects men, women and children of all ages, ethnicities, and socioeconomic backgrounds. 75-80% of people with the disease are female. It is estimated that up to 600,000 Victorians may be living with ME/CFS, and as many as 90% are undiagnosed.
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How Long Does Chronic Fatigue Syndrome Last
Chronic fatigue syndrome is a fluctuating condition in which your symptoms can change unpredictably in nature and severity over a day, week or longer. The impacts are variable in severity, but can involve flare-ups and relapses even if symptoms are well managed.
There is no test to diagnose the condition. The diagnosis is made in people who have a certain set of symptoms .
Home Remedies And Lifestyle Changes
Making some lifestyle changes may help reduce your symptoms.
Limiting or eliminating your caffeine intake can help you sleep better and ease your insomnia. You should limit or avoid nicotine and alcohol too.
Try to avoid napping during the day if its hurting your ability to sleep at night.
Create a sleep routine. Go to bed at the same time every night and aim to wake up around the same time every day.
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How Does It Happen
Doctors don’t know what causes ME/CFS, but they have identified different underlying abnormalities in people with the condition.
Immune system problems: Several parts of the immune system are different in people with ME/CFS. Some research indicates that these abnormalities may cause the symptoms of the illness. Fortunately, people with ME/CFS don’t have a defective immune system in the way that people with HIV/AIDS do.
Energy production: In you have ME/CFS, the cells in your body have trouble making enough energy.
Brain abnormalities: Abnormalities show up in pictures of the brain , in levels of brain hormones, and in the brain’s electrical system . These abnormalities can come and go, and aren’t necessarily permanent.
Blood pressure and pulse issues: When you stand, you blood pressure could drop and your heart might start to beat faster. You might feel faint or pass out if your blood pressure drops too low.
Genes: Some studies have found abnormalities in the structure of certain genes. Others point to abnormalities in the way certain genes are turned on and off inside your cells. Studies of identical and non-identical twins indicate that some people inherit a genetic likelihood for getting the illness.
Serotonin and cortisol: Several studies indicate that serotonin, a major brain chemical, plays an important role in ME/CFS symptoms. People with the illness have low levels of cortisol, a hormone the body releases in response to stress.
