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
How Is Me/cfs Treated
Right now, there is no cure or FDA-approved treatments for ME/CFS. But, there are things you and your doctor can do to help ease your symptoms. Because the symptoms of ME/CFS vary from person to person, the management plan you discuss with your doctor may look very different from the plan of another person with ME/CFS.
What To Expect From Your Doctor
Your doctor is likely to ask you a number of questions, such as:
- What are your symptoms and when did they begin?
- Does anything make your symptoms better or worse?
- Do you have problems with memory or concentration?
- Are you having trouble sleeping?
- How often do you feel depressed or anxious?
- How much do your symptoms limit your ability to function? For example, have you ever had to miss school or work because of your symptoms?
- What treatments have you tried so far for this condition? How have they worked?
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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.
Nourish Yourself With The Right Diet
Optimal nutrition is vital for overcoming any kind of chronic illness and related digestive issues. The right diet supplies the body with the proper balance of nutrients necessary for healing, acquired from foods that are naturally easy to digest, promote the growth of normal microbes in the gut, and support healthy metabolism.
To eat this way means leaving behind the processed food products that have come to dominate the modern food supply and are loaded with carbohydrates and toxic fat. These foods are mostly derived from processed forms of wheat, corn, soybeans, and sugar, all of which disrupt immune system function, communication, and all other systems in the body.
The best diet for overcoming chronic fatigue syndrome can be boiled down to six basic guidelines. Follow these, and youll quickly propel your recovery in a forward direction.
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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.
Treat The Worst First
Start by listing your worst symptomsthe ones that make it hardest to get through the day. With your doctor, focus first on treating those symptoms. Decide whether a specialist might be helpful for any of them.
The most common ME/CFS symptoms can also be the most treatable.
Symptoms worse after activity
Learning how to manage your activity can help you be as active as possible without causing your symptoms to get worse. This includes:
- Estimating how much energy you have on a given day. This is sometimes called your energy envelope. You spend only that much energy, and not more.
- Estimating how much energy an activity takes and how long you can do that activity. You stop when you reach that time, and then take a break.
- Not pushing yourself to get more done on days you feel well.
- Adapting activities to make them easier. One example is sitting down while doing the dishes.
Sleep
Good sleep habits can help improve the quality of your sleep. If you also try medicine for sleep, its best to start on a low dose. Certain antidepressants help with sleep, mood, and chronic pain, so your doctor may suggest trying one.
Feeling dizzy or weak while sitting or standing
Your doctor may have you wear pressure stockings, put your legs up while sitting, or increase your salt intake. Your doctor may also suggest medicines like fludrocortisone or midodrine.
Pain
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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.
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Find Ways To Relax And Reset Your Mind
For some people, taking 20 minutes during the afternoon to meditate can be enough to recharge. Maybe yoga or deep breathing is your thing. Whatever you do, find time to relax and reset your mind.
Chronic fatigue can impair your health and happiness, and there is no one-size-fits-all solution. A chiropractor may help address any interference in your spine that may contribute to fatigue, as well as help manage the symptoms of chronic fatigue syndrome. While it may take some time, and some behavior changes, you can get your energy back and reclaim your health and wellbeing.
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What To Think About
Along with the treatment you get from your doctor, you might find that other treatments help too. Some people may try different diets or natural health products to help manage their symptoms. If you try a new diet or natural health product pay attention to how your body and symptoms respond to it. It may help to work closely with your doctor to figure out what works best for you.
Your mind and body are connected and affect each other. Physical illnesses can be made worseor betterby your feelings and attitudes, and vice versa. Learn as much as you can about ME/CFS. Then work with your doctor to learn ways to cope with your symptoms. Get emotional support from your health professionals as well as from your family and friends.
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 .
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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
Complementary And Physical Therapies
There are several complementary and physical therapies that may help relieve symptoms in CFS. Acupuncture, tai chi, massage, meditation, relaxation therapy and yoga may help people to relax and increase energy, as well as treat muscular aches and pains.
Heat packs, warm baths and gentle stretching exercises may help with muscle and joint pain. TENS transcutaneous electrical nerve stimulation can also provide relief from muscle pain.
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S To Overcome Chronic Fatigue Syndrome
Chronic Fatigue Syndrome is a chronic illness characterized by extreme fatigue that lasts for more than six months. This fatigue cannot be explained away by an underlying medical condition. In fact, one of the diseases principle challenges is that its impossible to diagnose with laboratory tests. However, some professionals believe it is closely related to adrenal fatigue or system wide inflammation of the body.
The process for diagnosis usually begins with ruling out possible underlying diseases and chronic conditions until the only choice left is chronic fatigue syndrome. Left untreated, it decreases stamina, memory and concentration.
Chronic fatigue syndrome can result in strained relationships with friends and family, especially when it remain undiagnosed and/or untreated. Guilt, anxiety and anger are all common emotional responses for those fighting chronic fatigue.
Currently, over 1 million Americans are suffering from this debilitating illness that manifests with a lack of energy and motivation, and women are 24 times more likely than men to be diagnosed.
Are You Often Subject To Intense Fatigue
How do you know your energy level?
Just by knowing if you are tired and how much/how often you get tired.
Fatigue is simply a lack of energy caused by a weak metabolism that does not produce adequate power and vitality.
This manifests itself in different ways according to the people.
You are tired in the morning when you wake up, while you have slept all night.
You get up late in the morning because you say you are an evening person.
You are tired after meals with a desire to nap, especially after lunch.
You are tired when you fast or skip one to two affiliate meals.
You are tired when you make a particular physical effort.
Several types of fatigue that simply reflect a crucial lack of vital energy is caused by weak metabolism.
An optimal metabolism allows one to have a stable and constant energy throughout the day.
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The Importance Of Feeling Understood
I managed to hold it together while in my lawyers office, but once outside I immediately broke down into tears.
Despite the fact that Im used to responses such as I get tired too and I wish I could nap all the time like you do, it still hurts when I hear them.
Its incredibly frustrating to have a debilitating condition thats frequently brushed off as being just tired or as something that could be fixed by lying down for a few minutes.
Dealing with chronic illness and disability is already a lonely and isolating experience, and being misunderstood only increases those feelings. Beyond that, when medical providers or others who have key roles in our health and wellness dont understand us, it can impact the quality of care we receive.
It seemed vitally important to me to find creative ways to describe my struggles with CFS so other people could better understand what I was going through.
But how do you describe something when the other person has no frame of reference for it?
You find the parallels with your condition to things people understand and have direct experience with. Here are three ways I describe living with CFS that Ive found particularly useful.
Living With Your Mother
The other day a friend asked me if I wanted to join her in canvassing the neighborhood selling chocolate almonds. The answer was an easy, No. Ill be entertaining my mother-in-law tonight. Living with this less-than-desirable house guest doesnt come with many up-sides, so I figure using it as a excuse now and then is fair.
post-exertional malaise . Simply put, this is the all-kinds-of-terrible you feel 24 to 48 hours after participating in rigorous physical activity. So while your mother-in-law may appear to be enjoying her time on the BMX track, make no mistake, she will make you pay later. There will be no telling what injuries she may acquire and how long you will have to hear about them.
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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.
How To Overcome Chronic Fatigue Syndrome
Nearly everyone experiences fatigue on occasion, whether it be from working long hours, high stress, or not getting enough sleep. Although fatigue can be a temporary problem for many, most people are able to overcome it by making some lifestyle changes such as: eating better food, improving sleep, or reducing stress. Unfortunately approximately 1 million people in the United States experience a fatigue that is considered chronic, plaguing their daily existence for a minimum of 6 consecutive months.
There is much controversy regarding the causes of this chronic lethargy, and has been formally recognized by the medical community as chronic fatigue syndrome . There are a variety of causes and contributing factors that may play a role in its development and others that keep people stuck in a perpetual state of lethargic purgatory. Despite the fact that chronic fatigue syndrome may seem like an insurmountable problem, it can be overcome.
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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.
What You Can Do
Before your appointment, you may want to write a list that includes:
- Your signs and symptoms. Be thorough. While fatigue may be affecting you most, other symptoms â such as memory problems or headaches â also are important to share with your doctor.
- Key personal information. Recent changes or major stressors in your life can play a very real role in your physical well-being.
- Health information. List any other conditions for which you’re being treated and the names of any medications, vitamins or supplements that you take regularly.
- Questions to ask your doctor. Creating your list of questions in advance can help you make the most of your time with your doctor.
For chronic fatigue syndrome, some basic questions to ask your doctor include:
- What are the possible causes of my symptoms or condition?
- What tests do you recommend?
- If these tests don’t pinpoint the cause of my symptoms, what additional tests might I need?
- On what basis would you make a diagnosis of chronic fatigue syndrome?
- Are there any treatments or lifestyle changes that could help my symptoms now?
- Do you have any printed materials I can take with me? What websites do you recommend?
- What activity level should I aim for while we’re seeking a diagnosis?
- Do you recommend that I also see a mental health provider?
Don’t hesitate to ask other questions during your appointment as they occur to you.
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