Chronic fatigue: when there is no diagnosis, but the symptoms are real

“I sleep nine hours and wake up as if I hadn’t slept at all. My blood count is fine, my thyroid is fine. The doctor looked at me and told me to go for more walks. I do go. After a walk I’m in bed for two days.”

A lot of conversations about tiredness that won’t go away start like this, or something like it. The person has been to the doctor, perhaps several times. The results have come back clear. And instead of relief, they are left with the feeling that nobody believes them — sometimes not even they themselves any more. “Maybe I really am just lazy.”

You are not lazy. Tiredness that lasts for months and doesn’t lift with rest is a real symptom, even when it doesn’t (yet) have a name. In this piece I will try to describe what it can mean when there is no diagnosis, how different kinds of tiredness differ from one another, and where psychotherapy has its place in all this — and where it doesn’t.

The doctor first — and sometimes more than once

Tiredness is one of the most common reasons people see their GP, and also one of the most frustrating, because it can have so many causes. That is why the first step is always a medical examination. It often includes blood tests — a blood count and iron stores, thyroid function, blood sugar, kidney and liver function, sometimes vitamin B12 or coeliac disease — and a conversation about sleep, the medicines you take and your mood. What exactly makes sense to check is for the doctor to judge; it isn’t a list you can tick off yourself.

There are, however, some signs that are worth taking to a doctor sooner rather than later: unexplained weight loss, fever or night sweats, swollen glands, blood in your stools or urine, breathlessness on slight exertion, and of course tiredness that is quickly getting worse. These aren’t reasons to panic, but they are reasons not to wait.

The second visit matters too. If the tiredness hasn’t improved after a few weeks or months, or if new symptoms have appeared, go back. A result that was fine in March doesn’t tell you everything about October.

What it means when there is no diagnosis

When the results are normal, people often hear something the doctor didn’t say: that there is nothing wrong with them. In reality, “your results are normal” only means that the tests that were done did not show the illnesses those tests are able to show.

This is far less unusual than it seems. Back in 1989, Kurt Kroenke and Arthur Mangelsdorff followed people who saw a doctor about common physical complaints — including tiredness, chest pain and headache — and found that a clear physical cause was identified in only a minority. A more recent systematic review of tiredness in general practice (Stadje et al., 2016) painted a similar picture: serious physical illnesses were rare among tired patients, while psychological distress, especially depression, was more common.

One illness, however, long went almost unnoticed, even though it is serious. In 2015 the US Institute of Medicine estimated that between 836,000 and 2.5 million people in the United States have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — and that 84 to 91 per cent of them have not been diagnosed. That figure doesn’t mean you have ME/CFS if you are tired. It does mean that “your results are normal” is not the same as “there is no illness”.

Tiredness is not one single thing

When we say “I’m tired”, we can mean very different things. The difference matters, because each kind leads somewhere else — and because it helps your doctor if you can describe it.

• Sleepiness. Your eyes close, you nod off while reading, on the sofa, or at worst behind the wheel. Here it makes sense to look at sleep: insomnia, breathing problems during sleep, medication.
• Exhaustion after exertion. An effort you once wouldn’t even have noticed knocks you flat — often not straight away, but the next day or the day after — and recovery takes days. This is a sign your doctor needs to hear about, because it is the central feature of ME/CFS.
• Emptiness. No drive, nothing brings joy, mornings are the hardest. This may be depression, which I wrote about in Depression and the body: pain, fatigue and digestion.
• Tired and wired at the same time. Your body is worn out but your head won’t switch off. Sleep is light, and you wake up feeling as if you have been on guard all night. This is often what long-term stress and an aroused nervous system look like.

The kinds often overlap. But simply being able to describe your tiredness more precisely than “I’m tired all the time” is a big step.

ME/CFS: an illness, not laziness

A few things need to be said clearly about myalgic encephalomyelitis/chronic fatigue syndrome, because a lot of misconceptions circulate around it — including among professionals.

ME/CFS is not the same as being very tired. Its central feature is what the literature calls post-exertional malaise: physical, mental or emotional effort that a healthy person wouldn’t even notice triggers a worsening of all symptoms, often with a delay, which can last for days or longer. It often comes with unrefreshing sleep, problems with attention and memory, and feeling unwell when standing for long.

In 2021 the UK’s National Institute for Health and Care Excellence (NICE) published new guidelines that significantly changed the approach. Graded exercise therapy is no longer recommended as a treatment, because it can harm people. Cognitive behavioural therapy remains in the guidelines, but explicitly as support for living with the illness and managing distress — not as a treatment that would cure it, and not because the illness is psychological.

This matters because for many years people with ME/CFS were told they just had to “push a bit harder”. For many, that very advice is what made them worse. The diagnosis is made by a doctor — not by a psychotherapist and not by this article. But if you recognise the pattern of crashing after effort, tell your doctor in exactly those words.

Where the nervous system plays a part

For many people with long-term tiredness and no clear cause, though, something else plays an important role: a body that has spent too long on standby. Chronic stress doesn’t only wear out your thoughts. It changes sleep, digestion, hormonal rhythms and your sense of energy. The paradox is that a person can be exhausted and tense at the same time — like a car that has been standing for a long time with the engine running.

Sleep plays a special part here. People who say they sleep enough often sleep lightly, wake frequently, or wake too early with a head full of thoughts. Why chronic insomnia is often not a sleep problem but an arousal problem is the subject of Hyperarousal: why chronic insomnia is not a sleep problem but an arousal problem. If you recognise yourself in an exhaustion that came with work or with caring for others, have a look at Physical signs of burnout that we blame on everything else.

None of this means tiredness is “all in your head”. The nervous system is not imagination. It is the part of the body that directs everything else — and when it is overloaded for a long time, the body feels it. I wrote about how mind and body intertwine in symptoms without a clear cause in “The tests are normal, but it still hurts”: what therapy knows about psychosomatics; there is a short explanation in the knowledge base under psychosomatics.

Swinging between a good day and a bad week

One of the most common patterns in long-term tiredness is swinging back and forth. A good day comes — and someone who has waited weeks for it does everything they have been putting off: cleans the flat, goes shopping, meets a friend, answers all their emails. The next day or two they are in bed. Then they wait for a good day again. And again they use everything up at once.

This isn’t a lack of discipline. It is a completely understandable response to a life that has narrowed. But in the long run the swinging is exhausting in itself, because the body never knows what is coming. The approach known as pacing goes in the other direction: even on a good day you do a little less than you could, and so build up a reserve. It isn’t about forcing yourself to do more, but about finding a level your body doesn’t punish you for.

What happens to relationships

Tiredness without a diagnosis doesn’t only weigh on the body. It weighs on relationships too — often more than you might expect. Because it can’t be seen, the people close to you find it hard to understand. “But you look fine.” “You managed to go for coffee yesterday.” A partner who takes on more and more of the housework can be worried and angry at the same time, without knowing whether it is all right to be angry with someone who is ill. And the person who is ill feels guilty for not coping, and angry at not being believed.

In relational family therapy, which I am training in, we see loops like this as something that happens between people, not inside just one of them. A conversation between partners might go something like this (a composite, not a real person):

“I don’t understand. On Saturday you were at the birthday party until midnight, and today you can’t even make it to the shop.”
“That’s exactly why I can’t. Saturday costs me three days.”
“Then why do you go?”
“Because I don’t want everyone to forget me.”

There are two stories in this short exchange, and both are true. He doesn’t see the price she pays. And she doesn’t say that she goes to the party out of fear of disappearing from other people’s lives. When both stories are said out loud, a different kind of agreement can begin — not about who is right, but about how to live with a limitation that is here.

Exercise: a week-long energy diary

This exercise doesn’t cure tiredness. But it helps you see it more precisely — and gives you something concrete to show your doctor. You can start today.

1. Rate your energy from 0 to 10 three times a day — in the morning, in the middle of the day and in the evening. Don’t think about it for too long; the first number is the right one.
2. Next to it, note what you did in the last few hours: physically (a walk, cleaning), mentally (work, reading, paperwork) and emotionally (a difficult conversation, a family gathering).
3. Each morning, note how you slept — not just how many hours, but whether you woke up rested.
4. Watch out for delay. If your energy crashes a day or two after an effort, mark it specially. That pattern is important information for your doctor.
5. After seven days, look at the whole picture. Which part of the day is best? What costs you the most? Where could you do a little less before you have to?

For more detailed tracking you can use the map of your energy through the day tool, and for sleep, the sleep diary.

Where psychotherapy doesn’t help — and where it does

I want to be honest here, because far too much over-promising has been written about tiredness.

Psychotherapy does not cure ME/CFS, nor post-viral fatigue or other physical illnesses that cause tiredness. Anyone who promises that by “resolving your emotions” you will be cured of an illness your body has is promising something they can’t deliver — and indirectly telling you that the illness is your own fault.

Tiredness is not always a sign that you are suppressing something. Sometimes it is simply a sign of an illness that hasn’t been found yet. That is why it is important to stay in touch with your doctor, even if you are already in therapy, and to go back whenever something changes.

Psychotherapy can, however, help with what tiredness brings with it. With grieving for the life you used to have. With the shame and guilt people carry because they “can’t cope”. With conversations with loved ones who don’t understand. With depression or anxiety, which can develop alongside a long-term illness or accompany it. And for people whose tiredness is closely linked to long-term overload, it can also help the nervous system finally settle.

If exhaustion brings you to thoughts that you can’t go on, or to thoughts of suicide, call Klic v duševni stiski (01 520 99 00 in Slovenia, every day from 7 pm to 7 am) or the Samaritans helpline (116 123 in Slovenia, 24 hours a day). In an emergency, call 112.

When people don’t believe you

One of the hardest parts of tiredness without a diagnosis is the feeling that you aren’t believed — by doctors, by those close to you, by colleagues, sometimes by yourself. I’d like to write down something I hear too rarely: your experience is information. It isn’t proof of any particular illness, but it is real and deserves to be taken seriously.

People with other long-term symptoms without a clear cause have similar experiences — pain that persists once the body has healed is the subject of Chronic pain and the nervous system: why pain stays after the wound has healed, and what research really tells us about calming the body is covered in How the body calms down: methods with evidence, not just advice. And if you feel your tiredness began during a period when you were looking after everything on your own, have a look at Burnout is not laziness: signs your nervous system is asking for a break.

If English is the language you feel most at home in, you are welcome to come to sessions in English; they take place in person in Ljubljana.

What to remember

• The doctor first — and again if the tiredness doesn’t improve or new signs appear.
• “Your results are normal” doesn’t mean “there’s nothing wrong with you”. It means the tests that were done didn’t show what they are able to show.
• Tiredness isn’t one thing: sleepiness, exhaustion after exertion, emptiness and tension each lead somewhere different.
• If effort knocks you flat only a day or two later, tell your doctor — and don’t force yourself into “more exercise”.
• Psychotherapy doesn’t cure physical illnesses, but it can help with the stress, grief, relationships and mood that come with tiredness.