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.
Excellent overview of symptoms. The point you make about the tendency of long time chronically ill people to ascribe all symptoms to ME/CFS/Fibromyalgia is very valid. I came close to dying by ignoring the symptoms of a severe cardiomyopathy which reduced my heart ejection fraction to 18%. I thought the fibro had gotten a bit severe but ‘knew’ the doctors couldn’t do anything to help me. Fortunately I completely recovered, my heart returning to normal function within a year but I have learned to be more mindful of new symptoms. Thanks Dan – your work is giving people back their… Read more »
Thanks for your comment Jacinta 👍🏻😉
Hi. The symptoms I also have are not on here. Loss of balance and cannot watch TV, phones or drive.anything that uses eyes for concentration like washing up or folding clothes. Are these less common?
Yes, intolerance to electronic media and balance issues are common!
Thanks for commenting. 👍😃
Hello my name is Diane, I have had Fibromyalgia and Chronic Fatigue for over 10 years now, enough time to figure out the best way to maintain a little normality for me has been to keep moving. I started by walking 5 – 10 minutes a day and slowly built that up to 30 mins to an hour, really picks up on the chronic fatigue, doesn’t get rid of it, but makes some impact. But what I really wanted to mention today is that. I experience majority of these symptoms and I manage the condition as best I can as… Read more »
Hello Di Unfortunately your experience is similar to many people’s – the symptoms you describe are quite typical. The difficulties with getting disability support are widespread and vary depending on where you live, but having the support of a doctor that understands ME/CFS and recognises that it’s real is really essential. My best advice is always for people to seek part-time work that they feel is low stress, to help them minimise any flare-ups. Being upfront with your employer about your condition and possibility of time off due to sickness usually works out better in the long-run, but of course… Read more »
Thank you for this good explanation (and all the other work you do..). I suffer from depersonalization and derealization as well. Do you think that this could also be a (psychological) symptom of the illness? Do you know if there are other CFS/ME sufferers who have this symptom as well?
I don’t know for sure, but it strikes me as possibly being a result of going through such a rough time, perhaps a way to cope!?
HOpe you are getting good support from a psychologist. 👍
Yes that could be it and/or a result from my anxiety. For a couple of years I had a 70/80% recovery rate. I am now in a big crash, including tense muscles and muscle spasms. I think what caused it was that I was trying brain rewiring techniques while not listening sufficiently to my body/taking enough rest. During this period of time I also lost myself, or sense of self. I always felt that the latter was a big part of me being well. In hindsight I think perhaps I did not reach 100% yet because of still pushing myself… Read more »
Derealization? ABSOLUTELY! A very common ME/CFS symptom. Feels like life isn’t real. I attribute mine to my low cardiac output and vision issues after being upright for too long.
Hi, I have been diagnosed with ME/CFS after 10 years of worsening symptoms and no diagnosis. I have many of the above symptoms. Some additional symptoms I have are: small amount of bladder incontinence only during flair-ups (my everyday is affected, but there’s a range of my best days that I have now to fatiguing by just getting out of bed) my feet and hands are not only cold (my feet hurt when they are cold), but my feet turn blue when sitting or standing. The more my symptoms flair (often but not always) the deeper blue my feet turn;… Read more »
Well, I have blogged about a ‘cure for ME/CFS‘ before.
Hopefully you have been inspired by the recovery interviews and are starting to make sense of it all to understand how you can recover.
I have all of these symptoms except I have this deep nerve itch to my right foot…not a generalized body itch….I had an mri eight years ago to rule out ms and it was fine..but im scared that this is more of a symptom of ms not cfs….have you heard of anyone having this? What are the odds of having an abnormal mri years later to verify ms? Im very worried 😟
People experiencing CFS have a lot of strange symptoms – but often it can be something completely different.
I recommend that you speak with your doctor. I don’t know the odds, but just think that if you get the all clear, all the worry/angst has been for nothing. Don’t hold off, get checked out!
I have suffered from an unbearable fatigue for years, maybe 7, it has been high and low in intensity for periods of time. Now I am 38, I work in a call center as a customer service agent for an Airline, I feel exhausted daily, but my symptoms get worse at the end of the day or usually after 4 hours of sitting down, it gets so bad that the only thing I can do is to lay down, I’ve missed a lot of days, and sometimes I leave 2 or 4 hours earlier because I am unable to finish… Read more »
Being thoroughly investigated is key before a diagnosis is made.
My advice would be to find another doctor and explain your symptoms. Once they have done a thorough investigation, if they don’t come up with a diagonsis ask them if it is CFS.
If it is confirmed that that is what you are experiencing, then I would encourage you to read CFS Unravelled.
Dr. Nancy Kalimantan is in Miami which might be a good option for you.
I have been told for 30 years I have anxiety brim starting to wonder if it is CFS.
Hi, I really loved your list. It’s nice to see something that discusses the other parts of ME/CFS. I have trouble when I overdo it that my muscles will start seizing up all over my body. It will start like when you’re cold and you start shaking but will go into full blown contractions that you can’t stop. I can’t even convey to you the pain that this causes. I was hospitalized for this once and was told it was because I was anxious and depressed. That was before my diagnosis of ME. I’ve tried to explain it to other… Read more »
Yes, it’s a tough gig isn’t it.
There are so many unusual symptoms and hopefully you can see how they tie back to the ANS.
Mostly, treating all these symptoms isn’t so successful just like you experienced – the key is to recover from the syndrome as a whole.
Have you watched any of the recovery stories/interviews? What did you think?
Cold intolerance that induces tremulousness? Yup, I’ve got that too.
They say I have fibromyalgia I don’t know all I know is I am so exhausted and in so much pain and nothing seems to help
It’s pretty rough at times isn’t it Kelly!
What did you think of the recovery stories?
Does having all over body tenderness to touch also go along with this?
yes this is a common symptom described as allodynia