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Living With Chronic Fatigue Syndrome

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Key Points About Chronic Fatigue Syndrome

‘It massively affects day-to-day life’ – Living with 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.

Talking With Your Doctor About Chronic Fatigue Syndrome

If you are experiencing fatigue on an ongoing basis despite getting adequate sleep, talk to your doctor. While you could be facing chronic fatigue syndrome, many illnesses ranging from obstructive sleep apnea to iron-deficiency anemia can cause fatigue. Your doctor will need to ask questions and order tests to determine what is causing fatigue in your personal situation. Preparing for your appointment can help it go more smoothly.

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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Your Fatigue Is Of A Physical Mental And Emotional Nature From Which There Is No Refuge You Are Shackled By This Unyielding Demon

Carmel Breen, before her illness, supports Munster at a rugby match.

Imagine: you slip gently into the Land of Nod as a high-drive, progressive, active, healthy person only to awaken to an unexpected, uninvited invader. Under the cloak of darkness, it has stealthily and rapidly colonised your world, rendering you a useless, frustrated spectator in the brutish annihilation of your hopes, dreams, aspirations and ambitions. Your liberty and life as you knew and planned it, robbed and taken from you against your will. Just imagine!

Welcome to an insight into the life of someone waking up every morning to wage war on the invisible yet omnipotent tyrant otherwise known as chronic fatigue syndrome. You get sick, you dont get better, as the days bleed into weeks, the weeks seep into months and the months normalise into years, you continue to disimprove.

Let me first articulate the insulting inadequacies of the name itself. It evokes a fluffy suggestion of nothing more than some sliding scale ranging from tiredness to exhaustion. It could be deducted from the name that a bit of sleep would cure all. However, even excess hours of sleeping fail to result in a refreshed awakening or even a sniff of a cure. A name has never failed a medical condition more degradingly.

You dont look sick

Keep Track Of Your Symptoms And Their Onset

Living With Chronic Fatigue Syndrome (ME/CFS)

Tracking the frequency, timing, and severity of your symptoms might help your doctor better understand what youre experiencing. Tracking your activity level and symptoms can also help you draw connections and learn your limits so that you can reduce flare-ups.

When tracking your symptoms, remember to write down everything ailing you, not just fatigue. People with CFS/ME often also have issues with pain, cognition, such as memory and concentration, and sleep. You might also consider keeping a sleep diary, so your doctor can see how well youre sleeping and determine if sleep might play a role in your symptoms.

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General Exercise Tips For People With Chronic Fatigue Syndrome

Be guided by your doctor or specialist, but general suggestions include:

  • Experiment to find the type of exercise that works best for you. Choose from a range of gentle activities such as stretching, yoga, tai chi, walking and light weight training.
  • Keep an activity diary so you have a long-term picture of your performance levels and factors that might impact on your symptoms.
  • Stop the physical activity well before you feel any symptom flare. Pacing yourself is very important.
  • Remember that the amount of exercise you can do will change from one day to the next.
  • Listen to your body if you dont feel up to exercising on a particular day, dont.
  • Find out as much as you can about your ME/CFS. Make sure you consult with health professionals who fully understand ME/CFS as a ‘real’ biomedical condition.

Dosage And Side Effects

In myasthenia gravis, the dosage of Mestinon is typically in the ballpark of 180mg a day . ME patients have generally used much lower doses, generally 30mg a day, although some patients have ventured up to 180mg a day. The Kawamura et al. case study on ME patients taking Mestinon recommended 10mg a day. In contrast, Dr. Systrom seems to encourage patients to gradually increase the dosage to 180mg a day if lower doses are tolerated. Dr. Goldstein is more moderate in his approach, recommending ME patients take 30-60mg per day. Dr. Systrom states that any side effects are generally minor and may include diarrhea, gastrointestinal issues or twitching muscles. Anecdotally online, some ME patients have reported side effects that are typically gastrointestinal and transient. The Kanjwal et al. POTS study found the most common side effects to be gastrointestinal in nature with 19% experiencing this symptom. The Jones et al. Fibromyalgia study found that Mestinon was generally well tolerated. Mestinon should be used with caution in patients with diabetes or asthma.

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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.

Alternative Or Complementary Medicine

Living With Chronic Fatigue Syndrome | Good Morning Britain

Since there is no standard treatment for CFS/ME, people often consider alternatives to traditional medicine or use non-traditional treatments to complement their other medications. Commonly used alternative and complementary treatments include:

  • Mind-body treatments, like qigong, tai chi, and meditation
  • Massage
  • Trigger point therapy, called myofascial release
  • Acupuncture
  • Chiropractic treatments

Complementary therapies have received mixed results when scientifically studied. Before beginning an alternative or complementary treatment, talk with your doctor to ensure that you arent trying something potentially dangerous.

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Cfs Concentration And Memory Problems

Concentration and memory problems are issues for anyone suffering chronic pain or chronic fatigue. Some physicians have prescribed stimulants for CFS with impaired concentration, but reports say it could potentially cause a crash from the medication. Calendars, to-do lists, and organizers are helpful memory aids.

What Is Chronic Fatigue Syndrome

Chronic fatigue syndrome , also known as myalgic encephalomyelitis , is a complex, chronic neurological condition affecting the brain, muscles, digestive system, immune system, cardiac system and other areas of the body .

ME/CFS is characterised by post-exertional malaise , which describes the worsening of symptoms after physical or mental activity. Some people might experience PEM after going on a walk, while those with a more severe illness might trigger it by simply brushing their teeth or reading a sentence. Once triggered, PEM may persist for days, weeks or months .

Note that PEM may not occur immediately after exertion and can start 24 hours later in some cases .

The cause of ME/CFS is not yet understood and there is no cure .

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Levels Of Chronic Fatigue Syndrome

ME/CFS varies in severity and can be categorised into three levels:

  • Mild ME/CFS: Activity is reduced by 50% or more
  • Moderate ME/CFS: The patient is mostly housebound
  • Severe ME/CFS: The patient is mostly bed-bound
  • Very severe ME/CFS: The patient is bed-bound and requires help for all daily living activities.
  • Living With Chronic Fatigue Syndrome

    9 Facts on Chronic Fatigue Syndrome
    Chronic fatigue syndrome , also known as Myalgic encephalomyelitis, is a complicated, serious, and long-term condition that involves many different body systems. It is a complex disorder characterized by extreme fatigue lasting at least six months, which cannot be explained entirely by an underlying medical condition. Individuals suffering from CFS are often unable to do their daily activities, and sometimes, they are confined to their beds. The fatigue gets worse with mental or physical activity but doesnt get better with rest.

    Other characteristics include:

    • Sleep that is not refreshing. Even after a full nights sleep, you still feel tired and worn out

    • Difficulties with concentration, memory, and focus

    • Feeling dizziness that increases when you go from sitting or laying down to standing up

    • Extreme fatigue

    • Stuffy nose and sore throat

    • Headaches

    • Enlarged lymph nodes in your armpits or neck

    • Unexplained joint or muscle pain

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    Clostridium Butyricum And An Update On My Me

    January 25, 2017 by Puzzling

    This blog entry will detail the theory behind Clostridium Butyricum as an ME treatment as well as my experience with this probiotic. Following this, I will examine a post-exertional malaise treatment that has proven useful to me. Finally, I will scrutinise the meaning of an abnormal blood test that I recently had.

    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
    • Depression

    The symptoms of CFS may look like other medical conditions. Always talk with your healthcare provider for a diagnosis.

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    Bridging The Gap Between Your Old Life & Your New One

    Living with someone who has fibromyalgia or chronic fatigue syndrome can be tough, whether that person is completely disabled, 50% functional, or goes through occasional flares. In all likelihood, having a chronically ill person in your household will impact your life.

    You can, however, take steps to make things easier for yourself. If you feel guilty for even wanting that, you’re not alonea lot of people in your situation feel like they should be worried about the sick person and not themselves. Your first step is to accept that living with someone who has a debilitating illness doesn’t mean you forfeit your right to feelings of your own.

    Let’s be completely honest here: While it’s not their fault symptoms can make them unpleasant, people with FMS or ME/CFS can be difficult to deal with at times. When you’re feeling especially burdened by housework, financial matters, and caretaking, a short temper or blank stare doesn’t help matters at all. You may not be able to discuss your feelings with the sick person in your life, as they might not be in a place to accept that your feelings are directed at the situation and not at them. It’s a good idea to find support from other places to get you through this.

    Fatigue Never Goes Away


    Like others with chronic fatigue, I have better and worse days. But chronic means that fatigue doesnt go away with time or treatment. Ive probably spent thousands of dollars over the last decade over-caffeinating myself and trying various exercise regimens, diets, vitamins and supplements, and other products claiming to crush fatigue with shiny marketing messages and bogus health claims.

    Eating healthy and regular exercise help to some degree but theyre not a cure-all. Im still perpetually tired.

    When I do have short moments of clarity, I know fatigue is always waiting in the wings. If I try to do something that I used to take for granted something as ordinary as laundry or emptying the dishwasher fatigue can rush in and leave me bedridden or stuck on the couch for the rest of the day or even up to a week.

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    Chronic Fatigue Syndrome Treatment

    Medicine can treat some of the symptoms, such as muscle aches, sleep problems, anxiety, and depression. The medicine may only reduce your symptoms and allow you to be more active, not cure the fatigue. So far, there is no medicine that cures the entire syndrome. Most symptoms improve with time.

    Your doctor can work with you to provide relief from your CFS symptoms. He or she also can help you find ways of coping with the way CFS changes your life. Chronic fatigue affects you physically, emotionally, and socially. When you address all of these factors, you have the best chance of adjusting to your illness and feeling more satisfied with your life.

    If you have CFS, having a good long-term relationship with your doctor helps. Communicating with your doctor will help him or her manage your CFS symptoms.

    The Beginning Of It All

    Living with Chronic Fatigue Syndrome is different for each individual. Id like to share with you my personal experience with this debilitating illness and how I contracted it in the first place.

    It all started with my mindset and how I thought I was pretty tough, in fact I thought I was some sort of modern day superwoman. I led a pretty healthy lifestyle, ate healthy and mostly organic food, didnt drink or smoke, and got regular exercise.

    However, I was pushing myself and working too hard day after day and this eventually took its toll on my body. I mistakenly thought that my generally healthy lifestyle was good enough insurance to ensure robust and glowing good health forever, no matter how hard I worked.

    I had a lot to learn about living life in a balanced way. It would take me years to eventually begin to get work and relaxation into some sort of normal ratio.

    Little did I realize that getting up at 5am most mornings to exercise, putting in a long and stress filled day at work along with lots of business travel, would after a few years eventually take its toll on my health. I didnt know then that the effects of stress on the body and mind would eventually lead me to being unable to work in a full time capacity.

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    Managing Your Expectations: Three Steps

    Part of accepting the situation is managing your expectations. For example, say you used to go for bike rides, do some hiking, maybe take a canoe out on the river. You’ll have to change your expectations about how you will spend your leisure time together. If the sick person has to leave their job, it could mean shifting expectations about your financial future, as well.

    My Daily Routine Living With Share Your Health Experience

    Living with Chronic Fatigue Syndrome: February 2014 Update ...

    Even small, mundane banalities are insurmountable and you resent the excessively abnormal amount of your energy that it hijacks. Your fatigue is of a physical, mental and emotional nature from which there is no refuge. You are shackled by this unyielding demon.

    Your exhaustion is further compounded by the energy it takes to lie. You lie by faking a smile to the world but this external denial of the war raging within pillages you of even more of your precious energy. The facade of pretending to be healthier than you feel is truly exhausting. Im okay or Fear of me becomes secret code for: I am functioning with great determination on an empty fuel tank, at pain levels even Paul OConnell would struggle to face down but I dont want to appear to be a hypochondriac or allow myself to be defined by this misunderstood curse. The latter is one concession I refuse to make. Even breathing lacks spontaneity and proves a laborious but necessary chore.

    Its not difficult to understand why those around you mistakenly suspect that you must be depressed. You are forced to decline invitations, you are unable for meets-ups or even phone conversations, you become increasingly unreliable/unavailable/forgetful, in an attempt to conserve energy you speak as little as possible and its as if the humorous department of your brain has slipped into a coma.

    Insomnia taunts you

    I sign off with a heartfelt salute to all CFS superheroes and their courageous, self-sacrificing, unsung carers. xx

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    Going Down The Natural Healing Path

    Ive always leaned more towards alternative health methods rather than western medicine, so after a few more weeks of still feeling bad I decided a visit to a naturopath was needed. Blood was taken and tests run which showed I was anemic and that my thyroid hormone levels were on the low side of normal.

    Finally, after several months I had a diagnosis which made some sense to me. I started on the supplements recommended by my naturopath, and after a month or so started feeling better. During this time I continued to get up early each morning to work out at the gym and work full time in my enjoyable if busy and demanding job.

    After a few months the symptoms of fatigue started to become apparent once more, so I returned to my naturopath who tested my thyroid again. The tests revealed that my levels had dropped to a lower level and it was unlikely that the homeopathic supplement she had given me for my thyroid would be able to raise the levels back to normal.

    This time I started to take a natural form of desiccated thyroid hormone. Once again after a couple of weeks I started to feel normal again. I continued on the natural hormones for several months and felt good.

    I was starting to see good results in my professional life from the hard work I had been doing. I knew that I had achieved what I set out to do and began to ask myself what next?

    At this time, on the lookout for my next professional challenge I asked the company to transfer me to their office in China.

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