Pragmatic Rehabilitation: The Fine Trial
Pragmatic rehabilitation is a programme involving gradually increasing activity designed collaboratively by the patient and the therapist. In response to an earlier successful trial, a larger trial was conducted. In this trial, patients fulfilling 1991 Oxford CFS criteria who were allocated to pragmatic rehabilitation reported a statistically significant though clinically modest improvement in fatigue compared with patients allocated to either supportive listening or treatment as usual, but after 12 months followup the differences were no longer statistically significant nor was there was any significant improvement in physical functioning at any time. About 10% of the trial participants were nonambulatory and about 30% met 1994 London criteria for ME, but separate results for these groups were not published . An accompanying editorial gave some possible reasons for the failure to replicate the earlier success in this trial, and called for further research. The patients in this trial had higher comorbidity and disability than patients in the earlier trial and in most other trials, and received fewer sessions than most successful trials of CBT and GET. The editorial also raised the question of whether generalists are as successful as specialists in offering behavioural interventions .
How To Exercise With Chronic Fatigue Syndrome
If you’re able to be active and you get the green light from your doctor, following a routine can help you reap some of the benefits of exercise, such as improved mood and better sleep.
Follow these expert-recommended tips to help you manage ME/CFS and stay active while reducing the risk of overexerting yourself.
What Are Chronic Fatigue Syndrome And Fibromyalgia
They are chronic conditions which affect daily functioning and involve chronic fatigue not much relieved by rest , chronic widespread muscle pain , mood and sleep disturbance , concentration difficulties, and sometimes headaches, intestinal and urinary symptoms.
We use a holistic approach which is based on current NICE guidelines for chronic fatigue syndrome and chronic pain .
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Symptoms Of Chronic Fatigue Syndrome
Doctors have narrowed down some of the triggers for chronic fatigue syndrome. Everyone is different, though, and may experience symptoms of chronic fatigue syndrome differently, but theCenters for Disease Control and doctors classifychronic fatigue syndrome as having at least four of the following physical symptoms for at least six months:
- Post-exertional malaise
- Unrefreshing sleep
Chronic fatigue syndrome can only be diagnosed when other diseases have been ruled out, but thats the problem: You may experience fatigue as a symptom of other health conditions.
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Complementary And Alternative Medicine
CFS/ME patients tend to use more alternative medicine treatments than people without . Patients often leave orthodox medical care because they feel that their condition has been unjustifiably attributed to psychological causes: they are given the message that it is all in the mind. In a twin study, 91% of twins with CFS/ME and 71% without CFS/ME used at least one alternative treatment. A large proportion of the study participants stated that alternative treatments were helpful .
Concluding Remarks And Future Directions
This review suggests that the beneficial effects of nutritional supplements are not random, but that their action is due to the removal of one of the causes of the CFS/ME. There is evidence that supplements may benefit CFS/ME patients therefore, nutritional supplements should be recommended, at least in CFS/ME patients with a biochemically proven deficiency. Studies investigating nutritional interventions in CFS/ME remain very limited most studies have had small sample sizes, and lacked long term followup . Despite the relative consistency in case definition, the studies differed with regard to inclusion and exclusion criteria and reporting participants’ sociodemographic characteristics and clinical features . This heterogeneity in study design makes the application of the findings to the clinical setting more difficult. Therefore, longerterm RCTs in homogeneous populations that use more specific case criteria are now warranted.
In agreement with several previous studies, pacing was consistently shown to be the most helpful treatment, CBT was useful for some patients but not all for all graded training may cause the condition to worsen. However, the results must be interpreted with care, as the participants are not a representative sample.
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Home Remedies And Lifestyle
Making lifestyle changes may greatly impact how you feel, and the specific changes you need can depend on the severity of your illness and whether certain activities exacerbate your symptoms. While some people may see the tremendous benefit just from making changes to the way they eat, for example, others may find that more sweeping changessuch as a job changemay be necessary.
Exercising Excessively Is Not A Good Idea
All CFS sufferers should know that CFS gets worse with strenuous activity. Whether the syndrome is at an all-time high or you are feeling well, you should never exert yourself unnecessarily. This is to avoid crashing right back to where you started. It would help if you avoided long and excessive exercises.
A healthy option is to own a Sit2Go 2-in-1 Flexispot Fitness Chair. This chair features a luxury office chair with a breathable backrest. Unlike regular chairs, though, this one has an exercise bike at the base of the chair. You can use the chair in the office, study room, and even the kitchen.
With this chair, you exercise quietly at your own pace without unnecessary pressure at the gym. You can also control the level at which you exert your body to prevent a relapse. That way, you don’t pressure your body too much. And at the same time, you do not miss out on exercise entirely.
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Change The Things You Can
No doubt, when an illness barges into your life unannounced and takes up residence, it can leave you feeling angry, defeated, and powerless. For me, there came a point, though, where those feelings needed to take a back seat to a more constructive focus on the things I could change. For example, I could be a mom. I could take tai chi, and I could pursue a new career in writing. These are things I find enjoyable, fulfilling, and, best of all, my mother-in-law finds them quite agreeable too!
If one thing has become clear over my journey with this illness, its that we are all called to make the best of our living situations. Who knows? One day I might wake up and my metaphorical roommate may have found herself other accommodations. But, safe to say, Im not holding my breath. For today, Im happy to make the best of it and take the lessons as they come. How do you deal with chronic fatigue syndrome? Share your experiences with me!
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What Fatigue Really Feels Like
Think about these scenarios:
- You had the flu and it knocked you out for a short period. You were too sick to get much done, and definitely too sick to work or play with your children.
- You had too much fun and a few too many drinks one night, then couldnt get off the couch the entire next day. You felt so weak and tired that you had to call in sick with some made-up illness.
Chronic fatigue resembles these situations, but its worse because it doesnt get better with medicine, rest, caffeine, a greasy breakfast, or time.
Indeed, Dr. Barlett told me that Im not alone in these descriptions.
People with RA will often describe their fatigue as a feeling of being completely wiped out or utterly exhausted or how I feel when Im coming down with the flu, she says. This type of fatigue does not seem to improve with sleep or rest, and very often is a sign that disease activity is increasing. Indeed, in work we did across many countries, almost everyone we spoke with mentioned extreme fatigue as the first and most reliable signs that they are about to have a serious disease flare.
Our fatigue is always there, nagging away.
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Ask About Flexible Work Arrangements
On days when the fatigue overwhelms Marco, he has the option of working from home. Its not an option for everyone but if you think your job might allows it, its worth asking about it, he says. My boss is pretty understanding and I try to limit it to days when the flare-ups are really bad, he explains. My last boss would never have let me do it though, so it really is about your office culture. Here are more tips for navigating work with chronic illness.
Can Complementary Or Alternative Medicine Help Manage The Symptoms Of Me/cfs
Some people say that complementary or alternative medicine has helped their ME/CFS symptoms. Keep in mind that many alternative treatments, dietary supplements, and herbal remedies claim to cure ME/CFS, but some might do more harm than good. Talk to your doctor before trying alternative therapies to be sure they’re safe.
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What Are The Symptoms Of Chronic Fatigue Syndrome
Symptoms of CFS often mimic the flu. The following are the most common symptoms of CFS. However, each person may experience symptoms differently. Symptoms may include:
- Sensitivity to light
- Low-grade fever
The symptoms of CFS may look like other medical conditions. Always talk with your healthcare provider for a diagnosis.
What Is Chronic Fatigue Syndrome
Chronic fatigue syndrome, which is also known as myalgic encephalomyelitis or systemic exertion intolerance disease, is a long-term condition that can interfere with daily life. Characterized by extreme fatigue that lasts for more than six months, chronic fatigue syndrome primarily affects individuals between the ages of 40 and 60. Symptoms can be mild or severe and may come and go. They may also develop over time or come on suddenly and without warning.
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Causes Of Extreme Fatigue
Many people struggle with fatigue, which has many causes some obvious, others not so much. Causes of chronic fatigue include poor quality or not enough sleep, a bad diet, not exercising, and metabolic and hormonal imbalances. It becomes a vicious cycle when fatigue sets in and worsens your fatigue.
But you can manage your fatigue when you first figure out the root causeor causes of feeling tired all the time. Some reasons why you might feel extreme fatigue include:
- Adrenal burnout
- Thyroid imbalances
- Other hormonal imbalances like testosterone, estrogen, and cortisol
- Being a perfectionist
- Being around overly critical or negative people
- Not having a positive mindset
- Food sensitivities
- Mitochondrial dysfunctions mitochondria are those little power plants in your cells. Malfunctioning mitochondria can create massive energy crashes.
- Overexercise a good workout should leave you feeling energetic and strong. Overexercising or overtraining can have the opposite effect, creating chronic fatigue that zaps your energy and mood.
- Toxicity including things like environmental pollutants, but also less-obvious toxins, including mold, mercury from amalgams, and electromagnetic fields from electronics.
This list goes on, and oftentimes multiple factors create or worsen fatigue. On the other hand, chronic fatigue might result from one primary reason, like poor sleep, stress, a bad diet, or not getting the right nutrients. These five strategies may help you boost your energy.
The Chronic Fatigue Syndrome Diet
The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society recommends that chronic fatigue patients avoid the following:
- Stimulants like coffee, tea, or caffeinated sodas
- Preservatives such as MSG that may excite the nervous system
Furthermore, individuals with chronic fatigue syndrome commonly experience unique dietary challenges, including food sensitivities and nutrient deficiencies. About two-thirds of chronic fatigue patients suffer from gastrointestinal issues, such as heartburn, nausea, diarrhea, or constipation. According to the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society, many of these chronic fatigue-related digestive problems may be caused by food sensitivities. Keeping a food journal can help identify problematic foods. Your practitioner may also recommend an elimination diet or other food sensitivity testing to pinpoint foods that trigger symptoms.
People with chronic fatigue syndrome may also suffer from nutrient deficiencies. For example, low levels of vitamin C, B vitamins, magnesium, zinc, l-carnitine, and essential fatty acids have been found to negatively impact immune function and aggravate symptoms. Eating a whole foods diet based on nutrient-rich foods, however, may help provide these critical nutrients. Your health care practitioner can help you plan and monitor your diet, and can also recommend supplementation as required to prevent deficiencies or help manage symptoms.
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Where Can I Get Support
ME/CFS can have a significant emotional and financial impact on your life. A lack of understanding and awareness about ME/CFS means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
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. They also offer resources and services for children and young people affected by ME/CFS and their families.
How Chronic Fatigue Syndrome Is Treated
There is no standard treatment for chronic fatigue syndrome, clinically known as myalgic encephalomyelitis/chronic fatigue syndrome . However, there are many options for managing symptoms and improving quality of life, including lifestyle changes, stress management, therapy, and medications. With the help of your healthcare provider and other caregivers, these can be tailored to your specific symptoms.
Verywell / Brianna Gilmartin
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Other Lifestyle Changes To Manage Me/cfs
Other ways to manage ME/CFS include:
- equipment â some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
- changes in your place of work or study â when you’re ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return
There’s limited or no evidence to recommend:
- resting completely â there’s no evidence this helps
- complementary medicine â there is not enough evidence that it’s helpful for ME/CFS
You should not take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.
Organize Your Medical Information
Having a handle on your medical information will make you a more powerful advocate for yourself.
I am a congenitally disorganized person. So, after years of papers flying all over the place, a friend helped me create a physical notebook, with tabs for Articles, Notes from Medical Appointments, Medical History, Current Medications, and Lab Results.
I had all of my lab results sent to me, and I alphabetized them with tabs, like Lupus, Lyme, Parvovirus, and Parasites. That made every appointment more productive for me and my providers.
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Eliminate Sugar And Processed Or Packaged Foods
Eat a candy bar and your energy will usually plummet soon after. Sugar and other refined carbohydrates give you a little shot of energy, but at a huge expense: Those blood sugar spikes nosedive quickly, leaving you feeling drained. If eliminating sugar completely is too challenging, gradually trade it for lower-sugar foods, like berries, to transition off sugar. Eat nuts instead of chips or cookies.
Further Information On The Guidance
In developing the guideline, the guideline development group aimed to draft recommendations to promote access to appropriate care and support and to encourage a collaborative relationship between patients, carers, and professionals.
Formal consensus methods were used to develop this guideline. The guideline development group used ratings of appropriateness to agree on evidence statements and associated recommendations.6 This was supplemented by use of the same methods with a sample of people outside the guideline development group, including health professionals involved in the care of people with CFS/ME, patients with CFS/ME, and carers. The ratings of the wider group were used to inform the guideline group of the range of opinions among health professionals, patients, and carers and to highlight draft statements that were ambiguous or unclear.
NICE has produced four different versions of the guideline: a full version a quick reference guide a version known as the NICE guideline that summarises the recommendations and a version for patients and the public. All these versions are available from the NICE website . Future updates of the guidelines will be produced as part of the NICE guideline development programme.7
The National Collaborating Centre for Primary Care thanks Professor Rosalind Raine and her team for advice on the use of the consensus method, and the Centre for Reviews and Dissemination at York for their review of the evidence.
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Mild Pain Relievers And Nsaids
CFS/ME patients may benefit from NSAIDs, which are commonly used to relieve pain and reduce inflammation. In this context, the NSAIDs include ibuprofen and naproxen. They sometimes relieve frequent or severe joint and muscle pain, headaches, and fevers .
Other prescription medicines include anticonvulsants, also called antiseizure medicines. These drugs are sometimes prescribed for pain and sleep problems. They seem to work best when used for nerve pain. Antidepressant medicine is also prescribed to ease depression and anxiety, to enhance the ability to concentrate and to improve sleep quality . For their part, narcotic medicines are sometimes prescribed for pain that is not relieved by overthecounter drugs. Narcotics are generally reserved for the most severe cases because of the risk of addiction, and are used only for a short time .