Fatigue

For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease.

That is why we decided that all the symptoms on this website should be written by patients, for patients. As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”.

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too.

About the author

I work in local government, and am an artist and mum of four. I was a very fit and healthy non-smoker, in my early 50s, before I caught Covid-19 in March 2022. A couple of months before falling ill, I climbed Mount Taranaki and biked the 152km Otago Rail Trail. I enjoyed a busy career, pursued many hobbies, and loved exploring our wonderful region’s beaches, bush and maunga.

Fatigue was one of the first signs I was unwell. I had gone for a long walk in the evening and felt well, but was worried about my son, who had tested positive a few days ago. The next day I couldn’t get off the sofa; it felt like a bad flu had arrived overnight. I thought it might last a few days. I was so wrong.

When my fatigue was at its worst, my life was largely spent moving from sofa to bed and back again. Fatigue has crippled me and stolen all the good bits of my life, leaving me just enough energy to do the bare minimum to survive.

Currently, I can only manage about 20% of what I used to do in a day. This is a significant improvement from 5–10% at my worst, but I’m a long way from returning to full health. I can no longer walk very far, run, swim, do Pilates, work full time, go to festivals/public events/functions, be active with my kids, ride my beloved e-scooter… My life is smaller and that makes me very sad. I have lost so much. I hope my kōrero | story helps you feel less alone.
– Female, NZ European/Māori, Ngāmotu/New Plymouth

A brief explanation of fatigue and Long Covid

Long Covid fatigue is not simply tiredness, but a cell deep exhaustion which is not alleviated by sleep. This debilitating symptom is closely linked to Post Exertional Malaise (PEM), another defining attribute of LC, where sufferers experience worse symptoms after exertion.

Most patients who test positive for Covid-19 experience fatigue that eventually lifts. However, those with Long Covid fatigue experience ongoing exhaustion, which is more profound and cannot be relieved by rest. It’s a near-constant state that reduces your energy, motivation and concentration, and affects your emotional and psychological wellbeing too. This exteme fatigue often leads to a diagnosis of MECFS (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome.

If you have Kowheori Roa | Long Covid chronic fatigue, you may wake in the morning feeling as though you’ve not slept. You may be unable to function at work, or too exhausted to manage basic daily affairs. To move slightly is to use up all your energy for the day. Friends and family may tell you to exercise and keep active, but this is harmful in the long run.

Fatigue can cause a wide range of symptoms, broadly falling into three categories:

Physical: feeling tired all the time, headaches, lightheadedness. Sore, aching or weak muscles. Loss of appetite and an inability to physically move your body very much. Just wanting to lie down and rest all the time. Physical tasks, even simple things such as showering, become mammoth efforts requiring all your energy and effort.
Mental: slowed reflexes and responses. Brain fog, short-term memory problems, poor concentration and inability to make decisions. You might forget things and struggle to string a sentence together, or find the right word. Mental tasks and decisions become onerous challenges.
Emotional: you may experience moodiness, irritability, low motivation, feeling depressed and hopelessness about your situation. You might feel guilty about not being able to participate and contribute. This can lead to feelings of depression, guilt and sometimes resentment.

Fatigue associated with Long Covid might have the following characteristics:

so severe that it interferes with the ability to engage in pre-illness activities
has a definite start date
not substantially eased by rest or moe | sleep
worsened by physical, mental or emotional exertion
difficulties with memory, focus and concentration.

Little is still known about what is happening in the body to cause this extreme fatige. Studies have shown that mitochondria, the energy factories of the cells, are damaged and are not able to produce the energy the body needs but further research is needed to understand why the mitochondria are dysfunctional, and how to fix them.

There is currently no known cure. There is only rest and very slow recovery in most cases.

In my experience

Fatigue feels like an overwhelming desire to lie down, even though I’d rather be doing other things. It feels like my bones weigh 500kg and I’m too tired to carry them around. My brain is foggy and extremely sleep deprived.

At times I’m angry, as I feel I’ve been robbed of my life. I have lost my income, my joy, my energy and my passion. It’s like an imposter has taken over my body: I look like me, but have none of my personality, spark, intellect and joy for life.

I am grieving my old life, but I am lucky I have supportive friends, family and an online community. Learn to say ‘yes’ to offers of help from them. Having supportive people in your life, who accept you as you are, is so important.

I remain determined to heal and regain my life. But I have had to let go of many dreams and plans, and that is hard. When I saw the words ‘you are not alone’ on the Long Covid Support Aotearoa Facebook group banner image, I just about cried. I had felt so alone, and discovering that others in New Zealand were experiencing the same things is a wonderful source of strength.

What others say fatigue is like

Some people say it is like “being hit by a freight train”. Others say that merely waking up feels like you have climbed a mountain. Many complain of bones and muscles aching as though they’d just carried an enormous load for many days. Because fatigue is invisible, people often tell sufferers they look great, but the reality is so different.

“I can do one thing a day. My life is now broken down into choices of deciding what ‘one thing’ I will do today. Will I attempt to do some laundry? Make dinner? Have coffee with a friend? Do a couple of hours of work? Get groceries? I can only pick one. If I try and do more, I ‘crash’ spectacularly and take days to recover.” – Teresa

“It is like having heavy chains and weights attached to your arms, legs, head, heart, lungs, brain. The simplest of tasks becomes a momentous challenge. A shower takes 30 minutes of preparation and a rest immediately afterwards – still damp and wrapped in a towel, flat on the bed – before I get enough energy to think about getting dressed.” – Anonymous

“Dreams of future study and career progression have faded, plans for solo exhibitions and travel are delayed. Achieving my bucket-list plans and goals looks impossible right now. It’s not just the physical toll, it’s the emotional toll this takes, and the financial impact that I may never recover from.” – Chris

What I have tried

Firstly, it’s important to understand that none of the following recommendations have been proven through clinical trials. Some patients see improvements through medication, supplements and/or lifestyle changes, and that’s a very personal journey. However, nearly all patients agree that resting and pacing/energy management are helpful.

This is what I have tried:

seek specialist advice, have your heart, lungs and bloods checked, try physiotherapy
prebiotics and probiotics to restore gut health and brain/body connection
resting, resting, resting
vitamins and minerals (check with your doctor first). I take vitamin B complex, a mitochondria supplement, L-Glutamine, multivitamins and minerals such as iron and magnesium
increasing my water intake, with filtered water if possible
oxygen therapy
techniques to stimulate my vagus nerve
gentle, calming massage (not a sports massage)
very slow aqua-walking or floating at my local pool (start for very short periods and gradually increase)
track your activities, sleep, periods of energy and ‘crashes’ to identify patterns – use an app or a diary
a pet can be good company and unconditional emotional tautoko | support
do a low-impact craft or hobby that you can manage in small bites
appreciate small things that bring joy
sit outside in the sunshine for at least a few minutes every day
eat a healthy diet: free of sugar, dairy, alcohol, and minimal white carbs/junk food
try to maintain social connections with people you enjoy
write a journal or see a counsellor to help with grief, depression and frustration
temporarily stop or reduce work hours, or suggest to your employer that you shift into a different role
cut back on study or other commitments that are causing stress
decide which activities to focus on and forget the rest.

What others have tried

Some other suggestions are:

taking a chair to events
suggesting activities that are more manageable (eg. pot-luck meal or takeaways instead of hosting a crowd)
using the spoon theory to manage your energy levels and activity each day
find tautoko | support online and from friends who understand
eat small and often, rather than large meals
avoid caffeine, alcohol, tobacco and illicit drugs
low-impact yoga and meditation
experiment with antihistamines or cannabis oil: they have helped some people
avoid known stressors and overly demanding schedules
have a relaxing nighttime routine, try melatonin, and limit technology use before bed
listen to calming music
Some people have found hyperbaric oxygen therapy has helped
CoQ10 is a supplement which targets the mitochondria which some people say has helped a little.

The best advice I received

The single best piece of advice I had was to rest. Rest. Rest. And then rest some more. There is no easy fix. There is no medicine you can take to feel well and back to normal. Tiny, gradual increases in activity at a very, very slow rate will āwhina | help. Overdoing it, ‘pushing through’ and trying to do things you used to do will only hamper your recovery.

How others can help

Believe us. The invisible nature of fatigue can be very challenging for people, as we might not look sick. Even if you’re trying to be understanding, don’t encourage us to ‘push through’ or ‘just get moving’. That will damage us in the long run.

It’s OK to feel frustrated, angry and resentful when we aren’t capable of doing things we used to do. But don’t blame us – we aren’t faking it. However frustrated you are, we are feeling it much worse. It isn’t that we don’t want to participate in life, or we aren’t pulling our weight. We’re debilitated.

Visit us. Offer to do the dishes, cook a meal, run the vacuum around. Or just sit with us, chat online, offer support and understanding. Let us know we aren’t alone.

Clinical information

The cause of fatigue is still not fully understood, but it’s likely there are several factors. It could be due to changes in the immune system and body chemistry, or triggered by a viral infection such as Covid-19.

Long Covid symptoms are very similar to the symptoms of chronic fatigue syndrome (CFS). Experts don’t yet know if the lingering fatigue symptoms after Covid-19 are the same as CFS.

People with CFS can have problems sleeping, muscle weakness and brain fog – symptoms often associated with Long Covid. To be diagnosed as having CFS, symptoms need to be present for six or more months.

Other common symptoms of fatigue include:

poor memory or concentration
sore throat
tender lymph nodes
muscle pain
pain in multiple joints without swelling or redness
headaches of a new type, pattern or severity
unrefreshing sleep
tiredness that can last for more than 24 hours after physical or mental effort.

Some people also report nausea, loss of appetite, irritable bowel syndrome (IBS), bloating, diarrhoea, irregular heartbeat, chest pain, jaw pain, night sweats, increased sensitivity to alcohol or medication, chronic cough, dizziness or dry eyes. The severity of symptoms can vary from day to day, or even within a day.

This is also very similar to experiences described by Long Covid patients.

How fatigue progresses

Initial stages: it may feel like you are getting the ‘flu’, had a late night out or overexerted yourself physically. It may feel like you’re burning the candle at both ends. You may be tired, achy, sore.

But this feeling will not go away with a good night’s rest. It persists over days, weeks, months, and it gets worse.

Later stages: If your fatigue persists long term, you may grieve. You may be angry, frustrated, anxious, depressed, sad and more. It’s normal to feel angry and depressed; seek help if these feelings affect your wellbeing.

Friends and family members could resent that you cannot do what you did before, and you may lose some of them. Things have changed, and you are a different person now.

You may find that slowing down your life and prioritising the important things is a strange gift. Suddenly you don’t act out of duty or pressure, or waste precious energy doing things that aren’t important to you.

Long term, you will hopefully recover and reclaim your life. Many Kowheori Roa | Long Covid sufferers eventually have improvement in fatigue levels. The key is to increase activity very slowly and steadily, carefully monitoring your bodily responses.

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.