What is ME/CFS? How it Starts & How to Adjust to Living with Chronic Fatigue Syndrome
What is ME/CFS? If you’re here, you might be someone who’s been grappling with mysterious symptoms, a loved one seeking understanding, or simply curious about what this invisible illness is. Whatever the reason, you’re in the right place.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is more than just feeling tired. It’s a complex, debilitating illness that can profoundly impact every aspect of life. From the mystery around its onset to the daily challenges of symptoms, navigating ME/CFS requires resilience and compassion.
In this post, I’ll delve into ME/CFS from all angles, exploring its possible causes, signs and symptoms, and expert-approved strategies for coping and adapting to life with this invisible chronic illness. Then I’ll cover ongoing research efforts and ways you can help advocate for awareness. Whether you’re personally affected by this condition or wanting to support someone who is, I’m here to offer valuable insights and a sense of solidarity for the journey ahead.
How it Starts: Exploring the Causes of ME/CFS
ME/CFS isn’t your average diagnosable illness. Scientists are still unsure what exactly causes ME/CFS, leaving some mystery around how exactly it starts.
But there are some theories about how it can be triggered:
Viral infections, such as Epstein-Barr or glandular fever
Bacterial infections
Immune system changes in response to stress or infection
Hormone imbalance or physical/emotional stress
Genetics
The CDC reports that one in ten people infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will also develop the symptoms of ME/CFS. It’s also well established that more women are affected by this condition than men. Why that is, scientists are not yet certain.
What is ME/CFS? Understanding Symptoms & Signs
There’s a reason healthcare professionals struggle to diagnose individuals with ME/CFS. Many ME/CFS symptoms are invisible, while others are very similar to many common illnesses. On top of that, these symptoms can appear on an unpredictable timeline, popping up at seemingly random times of day or worsening for weeks at a time.
Despite this irregularity, there are three core symptoms that define ME/CFS:
An inability to participate in routine activities for more than 6 months. Previous activities like work, school, and socializing are no longer possible. This is accompanied by serious fatigue that isn’t caused by ongoing activities or extra effort, and doesn’t get better with rest.
Post-Exertional Malaise (PEM). This is the worsening of symptoms after any amount of physical or mental exertion, even in minor amounts. Symptoms will often get worse 12 to 48 hours after the effort, which can last for long periods of time.
Poor sleep. This symptom causes an individual to still feel unrested after sleep, no matter how long they slept. If you want to dive into the lives of those who live with this symptom firsthand, watch Unrest, a powerful (and free) documentary.
There are also additional symptoms that may accompany PEM and fatigue. Every person’s cluster of symptoms is different:
Trouble sleeping, such as vivid dreams or waking up frequently.
Issues with memory, concentration, and clear thinking.
Muscle or joint aches and pains.
Flu-like symptoms.
Heart palpitations or irregular heartbeat.
Headaches.
Frequent dizzy or nausea spells.
If you have all three of the core symptoms, you may have ME/CFS. Consult with your physician if you suspect you have chronic fatigue syndrome or a similar condition.
Adapting to Life with ME/CFS: Finding Your New Rhythm
Once an individual develops ME/CFS, everything changes. Suddenly, the things you used to do with ease become exhausting, and activities you once enjoyed may feel more like a burden.
As someone who developed ME/CFS in 2009, I remember the day my life turned upside down, almost as if a switch had flipped. Those of us with this invisible chronic illness may struggle to come to terms with this reality: we have to find our new rhythm. For me, I knew I was now permanently on the feeder road of life.
When Chronic Fatigue Syndrome Lashes Out: Everyday Challenges with a Chronic Illness
Before you read any further, I want you to know that even after 15 years with this condition, I still unravel. I have bad days. And I still get fooled into thinking I’ve figured things out if I experience a string of good days.
This past week was a great example of an unexpected downturn.
We were just hit with a late winter snowstorm here in the Northeast. And while I have a great snow removal service that’s normally reliable, he was unable to help due to a broken-down snowblower.
I tried to shovel the end of my driveway myself, which was packed down with thick, heavy snow. But the more I tried, the more anxious I felt. Every morning, I take a trip to Starbucks to enjoy a green tea latte, which helps calm my system. But now I found myself stuck at the house, snowed in.
I quickly learned that this difficult shoveling was far too much exertion for me first thing in the morning. My fairy godmother activated all my internal alarms, so I headed back to bed, feeling defeated.
Practical Tips and Coping Strategies for Living with ME/CFS
After living with this condition for over 15 years, combined with my veterinary medical background, I’ve uncovered some useful coping strategies for managing ME/CFS. Life with a chronic invisible illness is a marathon, not a sprint, so be patient with yourself as you begin to figure out your new rhythm.
Track your Daily Activity
The symptoms of ME/CFS can be highly unpredictable, making it all the more important to track your activity regularly, whether it be in a daily journal or digital app. If technology wears you out like it does for me, stick with a pad and paper. This practice will help you identify the times of day or types of situations that tend to make you the most vulnerable.
Paying close attention to your activity may also reveal when you might have a bit more flexibility in how you manage your time. For myself, afternoons are often when I have more bandwidth with which to negotiate.
2. Practice Self-Compassion
The day to day struggles of this condition are hard enough without you being hard on yourself too. Focus on being kinder and more patient with your efforts, daily progress, and small wins.
Quiet moments of reflection throughout the day or guided meditations on self-compassion can create more peace in your heart. Tara Brach also has a wide variety of other meditations available. If searching for options is tough for you, consider asking a friend or family member to save links of some of your favorites for easy access.
Remember that each day is a new roll of the dice. Some days, you may do everything right and still feel worse, and that’s not your fault. Setbacks, ups and downs are a natural part of the journey.
3. Listen to and Trust Your Body
You may feel frustrated or even angry at your body for not being able to accomplish what it used to. But it’s essential to build a trusting relationship with your body. Get in touch with its needs so you can better intuit which actions are best for you throughout the day.
Pay attention to signals of fatigue or pain. For me, I know things are starting to shift when the world around me looks a bit fuzzy, or I feel a bit more detached. Do you feel that crash coming on? This is the time to rest. Are you feeling irritable, impatient, and anxious? It may be necessary to opt out of your social plan and cut back on stimulation.
It can be a full day of solitude, but it doesn’t have to be. You can also try reducing stimuli and resting for a little while, then see if you can proceed again.
Interacting with others is so important to our well-being, but social plans can and often have to be put off for another day. And that’s okay. Don’t ignore your body and push yourself to your breaking point – you could set yourself back for a while.
4. Pace, Plan, and Prioritize
Living with ME/CFS requires careful management of your time and exertion levels. This is where the Pace, Plan, and Prioritize method comes in.
Pace yourself by breaking up bigger goals into smaller tasks spread throughout the day or over the week. Make sure to build rest periods into your routine. Spend time sitting, reducing stimuli like sound and light, and resting when you can.
Plan your days out by creating a daily routine and structure for your life. This will help mitigate any unforeseen symptom flare-ups, and prevent PEM from getting the better of you. I am especially rigid about what I eat, especially first thing in the morning. I’ve found that a higher-protein breakfast helps keep my mind clearer.
Prioritize activities that bring you joy and fulfillment, and focus on the essential tasks. Set achievable goals that align with current energy levels and abilities to avoid burnout. None of us are superheroes, but the good news is we don’t need to be.
5. Always Have a “Plan B”
It’s time for “Plan B”! When you have ME/CFS, you never know when exactly it will creep up on you in social settings. After much trial and error, I’ve found that it’s prudent to always have a back-up plan for removing myself from any outing or special event. Make sure you communicate this with people that matter, especially if carpooling is involved.
By always having a “Plan B” you’ll have the peace of mind knowing that if your battery unexpectedly drains to zero, you have a contingency plan for getting home so you can rest and recover.
6. Manage Stress & Maintain a Healthy Lifestyle
Relaxation techniques can be really good for managing symptoms like tension headaches, heart palpitations, and trouble sleeping. Dedicating even just one sliver of your day to belly breathing, meditation, or gentle stretching can reduce stress levels and give you a feeling of accomplishment.
Other healthy habits can go a long way in well-being as well. Focus on eating nutritious foods to replenish your energy, gentle exercise when possible, adequate hydration, and regular social interactions. And don’t forget–these valuable social interactions can happen without you having to leave the house.
7. Surround Yourself with Support
None of us are islands, and we need each other to lean on through challenging times. Invest time in building a strong support network for yourself, full of empathetic, understanding, and uplifting people.
Family members, friends, and caring healthcare providers can offer practical help, emotional support, and encouragement when things feel overwhelming or your condition feels tough to manage. You don’t need an army of supporters, just a few key advocates to lean on.
Building Awareness and Advocacy for ME/CFS
If you were searching for answers to the question: what is ME/CFS, I hope you feel well informed. As we explore the complexities of ME/CFS, it’s clear that raising awareness and advocating for better understanding of this unseen condition is paramount.
CNNCourage LLC aims to bridge the gap between patients, healthcare providers, and workplaces. My keynotes, workshops, and advocacy platform promote empathy, understanding, and alternative methods for approaching symptom observation and diagnosis.
While there is progress in understanding ME/CFS, there remain unanswered questions and ongoing studies still attempting to unravel its mysteries. Supporting research initiatives, participating in clinical trials, and staying up to date on recent major studies are crucial steps toward finding effective treatments and improving the quality of life for those affected. Solve M.E. is a good place to start.
Together, let’s continue to advocate, educate, and support one another in our collective journey toward greater awareness, understanding, and compassion for those living with ME/CFS and other invisible illnesses.
