How Bad Is Fibromyalgia Really
The pain from fibromyalgia can be intense and constant. It can be severe enough to keep you home from work and other activities. In a National Health Interview Survey, 87 percent of participants reported having pain on most days or every day of their lives. Fibromyalgia can also cause intense emotional symptoms.
Characterization Of Study Population
Our sample population was selected from three areas, which were quite distinct, but which covered a broad range of characteristics. These included East Anglia, a largely rural area with numerous small to medium-sized market towns and few large population centres East Yorkshire, with one large city manifesting many of the features of industrial decline and inner city deprivation and a large rural hinterland and London, with a large non-indigenous and highly mobile population, and marked economic polarization, with very affluent and significantly deprived populations living in close proximity . The practices in London come from areas where the proportion of people from Black and Ethnic Minorities is around 40%, with up to a third born outside the UK, large numbers of whom were from south Asia and sub-Saharan Africa . The proportion of individuals under five years of age was in most places between 6% and 6.5%, while the proportion of those aged over 65 years varied between 7% and 15%. Between 20% and 25% of the adults had no formal qualifications .
Table 1 Demographic data on GP practices and study population in the three studied regions
The Canadian group had higher pain scores than the CDC-1994 group and 5 P = 0.003). The group classified as non-cases had lower fatigue and pain scores and 2 and in relation to the CDC-1994 group .
How Is Me/cfs Treated
There is no cure for ME/CFS, but there are several things your doctor can suggest to help you relieve your symptoms and improve your quality of life.
Be careful when considering any commercially available product or treatment promoted as a cure for ME/CFS, as it doesnt have a known cure yet.
Current treatments have 2 key aspects.
- Pacing and rest: pacing is a strategy designed to help you live within your energy envelope this is the amount of energy you can safely use without triggering symptoms. It breaks down your activity into short bursts, interspersed with rest. The aim is to have some energy left at the end of the day. For more information about pacing, see the Emerge Australia fact sheet.
- Stepwise symptom management: this involves ranking your symptoms and exploring ways to reduce your symptoms, starting with the most problematic ones.
Your doctor may also suggest working with other healthcare professionals such as an occupational therapist, physiotherapist or psychologist.
Ask your doctor about how to best manage your work or school commitments while you are sick and when you might be ready to return.
It may also help if you:
- keep a diary to see whether certain activities or levels of exercise tend to trigger your symptoms
- make time to relax when you can
- go to bed at the same time each night and limit your daytime napping
- avoid caffeine, alcohol, nicotine and anything else that could affect your sleep
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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.
Diagnosis And Treatment For Me/cfs
Currently, there is no single test to diagnose ME/CFS. Doctors make a diagnosis by excluding all other illnesses that might be causing symptoms and following accepted diagnostic criteria. The persons results from routine medical tests will often be normal, but additional tests may show abnormalities.
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How Do People Report Reducing Their Symptoms And Moving Toward Recovery
In the absence of any approved medical treatment for ME/CFS, sufferers of the disease take their healing into their own hands. Many people who report improving their symptoms or recoveringlike Bruce, Carrie, Kenneth, and Karendescribe how they used pacing to help them very gradually increase their activity levels and regain their health.
Pacing is basically what it sounds like: paying attention to your energy level and other symptoms, and only doing what you can do without making your symptoms worse. ME/CFS patients often find it helpful to have planned periods of rest throughout the day. It can take a great deal of willpower and discipline to modify your lifestyle in this way, sticking to what feels like a very limiting schedule. But the alternativeoverdoing it and triggering the out-of-proportion intensification of symptoms is worse.
The focus on pacing as a method of recovery can make it sound like ME/CFS is a psychosomatic condition, but research has clearly shown that it is a physiological illness involving multiple systems of the body and causing many physical symptoms. The reason why pacing is helpful in recovery is simply because slowing down and paying attention to what your mind/body needs allows your systems to gradually heal and return to homeostasis.
If you have reduced your symptoms or recovered from ME/CFS by any means and would like to share your story, I will add it to this post so that others can learn from your experiences. You can email me at
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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It Feels Like Im Seeing Everything From Underwater
Another thing Ive found useful in describing my symptoms to others is the use of nature-based metaphors. For example, I may tell somebody that my nerve pain feels like a wildfire leaping from one limb to another. Or I may explain that the cognitive difficulties Im experiencing feel like Im seeing everything from underwater, moving slowly and just out of reach.
Just like a descriptive part in a novel, these metaphors allow people to envision what I may be going through, even without having the personal experience.
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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You Wont Win Every Battle
My metaphorical mother-in-law is a formidable character. There will definitely be bad times that in CFS-speak we call relapse. When this happens, I cant stress enough the power of accepting defeat as the first step towards recovery. For my own sake, I use these times to drink a lot of tea with the MIL, reassure her that everything will be OK, and convince her to watch Downton Abbey with me until shes ready to bury the hatchet.
Get 7 9 Hours Of Sleep Nightly
The National Sleep Foundation recommends adults get seven to nine hours of sleep per night. Some questions you can ask yourself to see if you are not sleeping enough include: Does it take me a long time to fall asleep? Do I wake up often or am I restless? Do I feel sleepy when driving? Do I need caffeine to get through the day? Answer, yes, to any of these indicates you may not be getting enough quality sleep.
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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.
Whatever You Do: Choose Your Battles
Chronic fatigue syndrome never misses a chance to be heard when, say, you have a late night with friends or you try to do some strenuous gardening. Knowing this, I only go to battle with this illness when its worth it. For me, this means saying no to things like the office social or volunteering for the PTA. But a Garth Brooks concert? HELL YEAH!
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Chronic Fatigue Syndrome Me/cfs
A million or more people in the United States suffer from myalgic encephalomyelitis , also known as chronic fatigue syndrome , but remarkably little is known about the cause of the disease, and effective therapies are lacking. ME/CFS is characterized by debilitating fatigue that is not relieved by rest or due to any other medical condition, as well as a myriad of symptoms, including musculoskeletal pain, headaches, cognitive difficulties, and sleep disturbances. No simple scientifically validated tests for the illness exist, leading to great uncertainty among clinicians when evaluating patients. The absence of biomarkers for the disease and the lack of available research models for ME/CFS show how little research there has been to date.
One of three new ME/CFS research centers funded by the National Institutes of Health, the Cornell ME/CFS Collaborative Research Center is a new component of the Center for Enervating NeuroImmune Disease. The Cornell ME/CFS CRC is leveraging the experience and varied backgrounds of researchers from Cornell in Ithaca, Weill Cornell Medicine, Ithaca College, and Boyce Thompson Institute, as well as key personnel from many other organizations, to address this research deficiency.
Assessment And Treatment Of Me/cfs Patients:
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Immune Disturbance Is A Clue Not An Answer
With some cytokines at lower levels and a few at higher levels, the study results indicate a markedly disturbed immune signature akin to patterns seen in cases of autoimmunity, the study authors concluded.
But a disturbed immune processes isnt specific enough to pinpoint the cause of the condition. It could be a virus or an allergy that sends the immune system off course, according to Hornig.
Theres still work to be done, in other words.
What we aim to do with this research is to fill up the empty toolkits of clinicians, Hornig said. There are no clear diagnostic tests, and there are no treatments in those toolkits either. We want to get some traction so that there isnt a disincentive for physicians to diagnose this illness.
What Is The Latest Research On Me/cfs
Today, we have a better understanding of ME/CFS, but researchers are still searching for the cause. ME/CFS is sometimes seen in members of the same family, perhaps because of a genetic link. Researchers are also testing a variety of treatments for ME/CFS, including anti-viral medications and medications that affect the immune system.
Researchers also are looking at ways to help health care providers identify and diagnose ME/CFS more quickly. HHS currently supports a study led by the Institute of Medicine to recommend improved and updated criteria to help physicians make a diagnosis of ME/CFS. The IOM’s recommendations may also guide future research.
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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.
Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Essentials Of Diagnosis And Management
- Alison C. BestedAffiliations
- Lily ChuCorrespondenceCorrespondence: Address to Lily Chu, MD, MSHS, Independent Consultant, 16 Lorton Ave, Unit 4, Burlingame, CA 94010.
- Nancy G. KlimasAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
- Jose G. MontoyaAffiliationsDr Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
- Irma R. ReyAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
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Long Covid/ Long Haulers
Following the outbreak of COVID-19 in late 2019 in Wuhan Province, China, and its rapid spread into other parts of the world, researchers, scientists, and patients familiar with post-viral syndromes began to become concerned not only about the acute danger of this particular virus but the potential long-term sequelae. Following SARS-1, West Nile Virus, H1N1 influenza virus, and other reports claim, that up to 11% of patients who had severe infections from Epstein-Barr virus , Q fever , or Ross River virus , and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion develop ME/CFS or Fibromyalgia.”
Given that some estimates suggest as much as 75% of all ME/CFS patients developed their illness following a post-viral or post-bacterial illness, there has been considerable frustration in the ME/CFS community-researchers and patients alike-that had ME/CFS patients been taken more seriously all along, then research into what causes this debilitating outcome in some patients and not in others would have been identified and potentially remedied by now.
Additionally, there is great frustration in the ME/CFS community as they watch these new cases as they are now being officially diagnosed as they pass the six-month mark required for official ME/CFS diagnosis.
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.”’
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Graded Exercise Therapy Controversy
The PACE TRIAL
In 2005, patient recruitment began for the PACE Trial – Pacing, Graded Activity, Cognitive Behavioral Therapy, and randomized Evaluation, which was conducted in the UK under the auspices of the UK Medical Research Council, Depart of Health and Social Care for England, Scottish Chief Scientist Office, and Department for Work and Pensions. The investigators were Peter White, a psychiatrist, Trudie Chalder, a professor of cognitive behavioral therapy, and Michael Sharpe, a professor of psychological medicine.
This study, which is the most well-funded single piece of ME/CFS research ever conducted, was designed to compare three different approaches to treatment:
1) Specialist Medical Care , which included the use of medications for symptoms management and instruction in avoidance of extreme activity or inactivity to SMC plus Adaptive Pacing Therapy , which is activity engagement limited by symptoms of PEM on one extreme and complete inactivity on the other
2) Informing the group that they were not ill, but rather deconditioned and should gradually return to activities and that there was nothing preventing their recovery and
3) CBT and GET with the premise that deconditioning, dysfunctional cognition, and false ideas were the source of their symptoms and functional limitations. The GET was to be advanced in a structured manner with the ultimate goal of the patients participating in regular aerobic exercise.
The consequences of the PACE Trial were:
