When people ask ‘What are the symptoms of Chronic Fatigue Syndrome (ME/CFS)’, they are often surprised to learn that there is an extensive ME/CFS Symptoms list.
This list is not to be used for the purpose of self-diagnosis as many of these symptoms may be produced by other serious illnesses. Hence you must seek the advice of a medical doctor to ensure that you receive appropriate medical care.
Core Chronic Fatigue Syndrome Symptoms List:
Patients experiencing ME/CFS report a profound loss of energy which is much worse than what normal healthy people experience when they are tired or fatigued. Whilst normal fatigue in healthy people resolves, the ME/CFS symptom of fatigue cannot be relieved by rest or sleep. Many people describe this fatigue as ‘profound’ and it significantly impacts their ability to live their life, often leaving them housebound or even bedridden at times.
ME/CFS Symptom Exacerbation – Post-exertional Malaise (PEM)
This is a key symptom of ME/CFS. The fatigue and other ME/CFS symptoms in this list typically increase and decrease in severity in what is called ‘flare-ups’. These flare ups are triggered by a range of things, most noticeably either physical or mental exertion. Besides an increase in symptoms and symptom severity, these flare ups include a feeling of malaise (PEM) sometimes also called Post-exertional neuroimmune exhaustion. Some people refer to this as flu-like symptoms, feeling run down, sore throat, swollen glands or nausea. It is often also described as feeling ‘toxic’ or ‘poisoned’.
Besides the fatigue not being relieved by sleep, people usually experience a range of sleep issues with ME/CFS. These can include much reduced or excessive amounts of sleep. People also experience difficulties falling asleep or reaching deep sleep, but waking early is also a common feature (often between 1 and 4 am).
This ME/CFS symptom may include difficulty concentrating, confusion, memory problems, difficulty processing information, word retrieval and disorientation.
This is a worsening of symptoms upon assuming and maintaining an upright position. This primarily includes rapid heartbeat (sometimes leading to a diagnosis of POTS), palpitations, chest pain, nausea, dizziness and poor blood pressure regulation.
This is often not listed as a core symptom of ME/CFS, however, whilst not always being present or obvious to the patient, it can be a key symptom and include things like aversion to touch, strong smells, lights, sounds and even tastes. Many people find that electronic media and devices like TV, computers and even phones trigger discomfort and symptom exacerbation.
Other Chronic Fatigue Syndrome Symptoms:
Because ME/CFS is a multi-system illness, it can actually create a truly astounding set of symptoms. So whilst some regard the above list to be the core Chronic Fatigue Syndrome symptoms, there are actually many other symptoms. These include but are not limited to:
- Pain including muscle aches, migraines and headaches
- Gastrointestinal disturbance including diarrhoea, constipation and other difficulties (sometimes a diagnosis of Irritable Bowel Syndrome is made)
- Low grade fever
- Low body temperature
- Vision problems
- Dry or sore eyes, sometimes described as pain behind or inside the eyes
- Need to urinate, often along with unquenchable thirst
- Muscle twitching described by some people as jolts or flashes
- Chills and cold hands or feet
- Significant change in weight
- Decreased libido
- Morning stiffness
- Alcohol intolerance
- Strange smell sensations often described as ammonium
- Allodynia – which is when your skin hurts to be touched
- Paresthesia – which are sensations such as itching, numbness, tingling, burning or a feeling that something is crawling on you
- Profuse sweating
- Multiple Chemical Sensitivities
- Electromagnetic Hypersensitivity
- Painful or swollen lymph nodes
- Hair loss
- Shortness of breath
- Temperature or weather sensitivity (weather changes can lead to symptom exacerbation)
- Canker sores and infections in the mouth
Psychological ME/CFS Symptoms List
Patients are often told that they have depression or anxiety and ‘that there is nothing wrong with them physically’. However, whilst they may be experiencing depressive thoughts and anxiety, their CFS symptoms are real of course. So unfortunately, sometimes their symptoms are misattributed to a mental illness when in fact they are experiencing a real physical illness.
This however does not mean that people experiencing ME/CFS don’t have co-morbid mental illness, they often do. So whilst the list of physical CFS symptoms is extensive, there can also be a range of psychological symptoms in CFS. This sometimes leads to other mental health diagnosis.
Here are some of the common psychological symptoms experienced:
- mood swings
- emotional “flattening”
Chronic Fatigue Syndrome Symptoms from secondary diagnosis (Co-morbid Conditions of CFS):
Given the large range of CFS symptoms, many of these symptoms are actually attributed to ‘other’ illnesses, with patients often thinking of themselves as being ‘particularly unlucky’ to have so many different things wrong with them. Often as symptoms change, a diagnosis of ‘separate’ syndromes of Fibromyalgia, Postural Orthostatic Tachycardia Syndrome (POTS), Multiple Chemical Sensitivities (MCS) or similar syndrome is made. However, these conditions are more and more recognised as being part of the same syndrome and in essence the same illness with merely different symptoms.
Some of these are genuinely separate illnesses, however, they are often experienced by people with ME/CFS and can often resolve when recovery from CFS is made. Such conditions may also exist before or after the patient has experienced ME/CFS and include but are not limited to:
- Severe premenstrual syndrome (PMS) or exacerbation of symptoms before and during period
- Irritable Bowel Syndrome (IBS)
- Benign Positional Vertigo (BPV)
- Adrenal Insufficiency (Adrenal Fatigue)
- Temporomandibular disorder (TMJ)
- Restless leg syndrome (RLS)
- Interstitial cystitis (IC)
- Small intestinal bacterial overgrowth (SIBO)
- Autoimmune conditions
Chronic Fatigue Syndrome Symptom Severity
It’s important to remember that different patients experience symptoms differently.
Whilst some have milder CFS symptoms most of the time, allowing them to care for themselves, do light housework and work part or even full-time, they usually do so at the cost of reducing all other activities including social activities.
Some people experience moderate CFS symptoms that restrict their abilities to a greater extent, with reduced mobility and usually not being able to work at all.
At its worst, CFS symptoms can be severe and debilitating where people are mostly bed-bound (or couch-bound) and need support caring for themselves.
Many people will waver between these symptom severities over time as they experience flare-ups. However, it is important to realise that the illness is not necessarily progressive. So whilst some people experience a worsening over the years, others find their symptoms reduce as time goes on. Reading and watching videos about patients that are severely ill can be quite distressing and should be avoided. Given the impact that stress can have, such activities can sometimes even lead to worsening of symptoms.
It is also important not to compare our CFS symptoms to others. Just because others have more severe symptoms or have been sick for longer, doesn’t diminish your experience or make it less significant. Being chronically ill is difficult and whilst your focus is best placed on recovery and finding some enjoyment in every day regardless of how you are feeling, please realise that compared to a healthy person, your experience of CFS symptoms is of course a difficult experience for you regardless of severity.
The danger of misattribution of Chronic Fatigue Syndrome Symptoms
With so many symptoms and so many co-morbid diagnoses, patients often experience ‘diagnosis fatigue’ where they no longer get their symptoms investigated and simply see them as just another Chronic Fatigue Syndrome Symptom.
So whilst many people with Chronic Fatigue Syndrome (ME/CFS) stop panicking every time they get symptoms that look like some other major and serious disease, it is all too easy to become complacent.
It’s absolutely essential that any worsening of symptoms or new symptoms be reported to your doctor so that these can be appropriately diagnosed and treated where possible.
But when you realise that CFS affects every major system of the body, including the nervous system, endocrine system, digestive system, cardiovascular system and even your cellular functions and metabolism, then it’s easy to see how so many symptoms and ‘different illnesses’ can occur.
Chronic Fatigue Syndrome Symptom Generation - The Biggest Clue to the Root Cause
When you look at the huge list of symptoms in Chronic Fatigue Syndrome, you can see that every bodily system is affected. Such a large range of symptoms often leads to unkind and unhelpful accusations that the patient is catastrophising, malingering or is a hypochondriac or has some kind of mental illness. This of course couldn't be further from the truth - ME/CFS is a real physical illness!
Not only are the symptoms of ME/CFS real, but this large range of symptoms is actually the biggest clue as to the root cause of the illness.
So what connects all the bodily systems? The CENTRAL nervous system. More specifically, it is the Autonomic Nervous System (ANS) that controls the various bodily systems.
Whilst the WHO identified ME/CFS as a neurological condition many years ago, the mechanisms that lead to the symptoms are still poorly understood by the wider medical community.
In the book CFS Unravelled I outline the explanation of ANS dysfunction as the root cause of the illness and outline how this explains the variation in illness onset, symptom variation, symptom generation and recovery. The book also outlines a framework for recovery and explains how this is experienced by many people despite severe or long-term illness.
There is no single magic cure, but recovery is possible and the key is to understand how the illness works so you can tailor a personal recovery action plan.