Chronic Fatigue Syndrome Symptoms List – shockingly long!

Chronic Fatigue Syndrome Symptoms List – shockingly long!

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.

IMPORTANT NOTE:  


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:

Severe Fatigue

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’.

Sleep Disturbance

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).

Cognitive Impairment

This ME/CFS symptom may include difficulty concentrating, confusion, memory problems, difficulty processing information, word retrieval and disorientation.

Orthostatic Intolerance

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. 

Neurological Sensitivities

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
  • Allergies
  • Tinnitus
  • Significant change in weight
  • Decreased libido
  • Morning stiffness
  • Alcohol intolerance
  • Rashes
  • 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
  • Vertigo

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
  • anxiety
  • depression
  • irritability
  • 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.

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. 

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)
  • Endometriosis
  • Tinnitus
  • Benign Positional Vertigo (BPV)
  • Hypothyroidism
  • Adrenal Insufficiency (Adrenal Fatigue)
  • Bruxism
  • 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. 

BOX:

Want to help educate others about ME/CFS?

Want to help?


You can help by

  • Making this article better by commenting below with any symptoms or co-morbid diagnosis you have experienced with ME/CFS that are not listed above.
  • Sharing this article or above YouTube video (https://youtu.be/uspzloRQShM) on other sites where ME/CFS is discussed, either in the comments section or in the main section by embedding links/videos directly if it is your website.
  • Sharing the below advocacy video demonstrating that the symptoms of CFS are much much more than 'just' fatigue.

Short version:

Extended version:

Here are some social media images for sharing:

14
What do you think? Leave a comment

avatar
2000
7 Comment threads
7 Thread replies
8 Followers
 
Most reacted comment
Hottest comment thread
8 Comment authors
Dan NeufferAnnieTammyCathy WilliamsSabrina Recent comment authors

  Subscribe  
newest oldest most voted
Notify of
Diane Smith
Guest
Diane Smith

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 »

jacinta liddell
Guest
jacinta liddell

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 »

Hayley Marie-Ashley
Guest
Hayley Marie-Ashley

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?

Sabrina
Guest
Sabrina

Hi,
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?
Kindest regards

Cathy Williams
Guest
Cathy Williams

I have had cfs for at least ten years or more. I was almost bedridden until my neurologist prescribed Wellbutrin HCL XL 300 mg once a day along with Nuvigil. My problems began after having Mono. I was never the same again.I work in s physicians office and ironically all of us caught it around the same time. Everyone bounced back except for me. This was around 2005 or 2006. I have spent so much money and so many drs. before I finally found a neurologist to help me. I do have a few scattered brain lesions that were so… Read more »

Tammy
Guest
Tammy

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 »

Annie
Guest
Annie

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 😟