Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a severe and complex illness affecting approximately 180,000 Australians, and 0.4 to 2.6% of the global population (MECFS Australia). It is often accompanied with Fibromyalgia (FM), an illness that exhibits muscle pain and stiffness.
CFS/ME is not just about fatigue, however fatigue is a significant symptom. There are many systems within the human body that become affected including – the immune, neurological, endocrine, gastro-intestinal and cardiac systems.
The illness can have massive impacts on a sufferers way of life. Some people are bedridden for years and have difficulty functioning at even a basic level for many, many years. Other people are lucky enough to overcome the illness in relatively short periods of time. It is so varied for each person.
It is difficult to get a proper diagnosis. Many people become very dispondent and depressed when they face difficulty in getting a diagnosis let alone a cure. No cure currently exists, management is the best option.
The key document referred to for diagnosing ME/CFS is the Canadian Guidelines for Medical Practitioners, published in 2003.
The best we can do as sufferers is manage our symptoms through lifestyle changes and good nutrition.
I’ve cobbled together a list of the various symptoms (below) that can come as the CFS/ME package. It is pretty unbelievable I know. Obviously each person is different and will experience their own specific symptoms and levels of severity.
Usually overwhelming and debilitating, much more severe than that arising from normal exertion.
- Fatigue waves accompanied by nausea
- unable to drag self out of bed
- able to do some activities before hitting the wall and become debilitated
- Post exertional malaise (major flare-up of symptoms post exercise)
- Joint pain
- Painful swollen or tender lymph nodes
- Back pains
- Chest pains
- Muscle pain – dull or sharp
- Chronic muscle pain (termed myalgia and arthralgia)
Growing consensus among researchers is that cognitive dysfunction is a given for CFS/ME. Symptoms may include:
- Difficulty concentrating
- Problems with memory sequencing
- Spatial disorganization
- Trouble giving and following directions
- Difficulty processing problems
- Slow intellectual speed
- Difficulty processing visual and auditory information
- Mental confusion
- Inability to concentrate
- Impairment of speech and/or reasoning
- Light-headedness, or feeling in a fog
- Word-finding problems
- Difficulty processing more than one thing at a time
- Inability to perform simple math functions
- Problems with verbal recall
- Motor problems
- Disturbance in abstract reasoning
- Sequencing problems
- Memory consolidation (extracting information from the environment and laying it down in the form of a memory)
- Short term memories being easily distorted or perturbed
As a result of what is going on in the body many people suffer with psychological / emotional problems:
- Panic attacks
- Mood swings
- Suicidal thoughts/tendencies
Gastrointestinal Disturbances and Weight Changes
- New onset of food allergies and sensitivities
- Yeast overgrowth in the gut
- Abdominal pain
- Irritable bowel
- Intolerance to alcohol
- Irritable bowel syndrome
- Stomach aches
- Loss of appetite
- Weight change up or down
This is also common to many patients with difficulties:
- Staying awake
- Falling asleep
- Staying asleep
- Chills and night sweats
Heart irregularities – consensus appears to be that heart problems don’t represent serious problems.
- Chest pain
- Shortness of breath
- Missed heartbeats
- Rapid heartbeats
- Chest pounding
- Sensitivity to odours, sound, chemicals, medications
- Sensitivity to heat and/or cold
- Balance problems (dizziness, light-headedness, fainting)
- Numbness, tingling and/or burning sensations
- Ringing in the ears (tinnitus)
- Blurred vision seeing spots and other visual disturbances
- Sensitivity to light
- Eye pain
- Menstrual problems (PMS, endometriosis)
- Dry mouth and eyes
- Muscle twitching
- Low-blood sugar
- Sore throat
- Bladder dysfunction
- Abnormal functioning of the liver (reduced detox function)
- Intermittent swelling of the fingers
- Hair loss
Source of information for symptoms: Understanding Chronic Fatigue Syndrome (2000) by Alastair Jackson; What your doctor may not tell you about Autoimmune Disorders (2003) by Edelson and Mitchell; and Recovering from Chronic Fatigue Syndrome: A Guide to Self Empowerment (1994) by William Collinge.
If you have CFS/ME
The best thing to do is to get in and find out as much about what works to manage the symptoms and promote recovery as you can.
- Build yourself a support network of therapists and sufferers – check out many of the fantastic blogs, programs, books and support tools available.
- Get into treatments early to support your immune system and experiment with what works best for you.
- Try to stay positive! I found getting on top of my emotions was top priority for me and then in my best frame of mind I could cope with the situation and take baby steps in my exploration.
- Keep in touch – send me an email, comment on my blog posts or connect with me on facebook or twitter.
All the best for your recovery.