SYMPTOMS

• Chronic Fatigue Syndrome (CFS) has been known by several different names, many of which have been downright insulting and have contributed towards the stigma against the condition and those who suffer severely with it. These names include mass hysteria, Raggedy Ann Syndrome, and the Yuppie Plague/ the Yuppie Flu. There are also a number of names tying the condition to a post-polio infection, some associating it with one of the Human Herpes Viruses, specifically Epstein-Barr Virus (HHV-4), as well as a few other viral and autoimmune conditions as well as various locations of outbreaks. Those who suffer from this debilitating illness more often prefer to refer to the illness as Myalgic Encephalomyelitis (ME) or (ME/CFS). Melissa Kaplan, an ME sufferer and researcher compiled a list of names which are shared here.

ME/CFS is a syndrome,  which  is made up for a collection of multiple symptoms. ME/CFS is also multi-systemic, meaning that multiplel systems of the body are affected. The collection of symptoms from literally all throughout and over the body can wax and wane, sometimes appearing and disappearing for months and even years at a time, often brought back on by viral or bacterial infections, new treatments or stressors on the body. The more the body is stressed, regardless of whether it’s a matter of via illness or other means of energy or depletion of resources, the worse the symptoms tend to be.

Melissa Kaplan compiled a detailed list of about 200 symptoms which are shared here on The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMECFSS) page, although there are still hundreds more which PWME can and do exhibit. The AMECFSS page states,

• Dr. Leonard Jason’s team at De Paul University found that eleven symptoms were sufficient to accurately identify ME/CFS patients. These symptoms were clustered in five areas:
• Profound loss of energy (fatigue)
• Post-exertional malaise of PEM (symptoms worsen after physical or mental exertion)
• Cognitive impairment
• Unrefreshing sleep
• Pain in joints and muscles, as well as headaches
• Doctors often refer to the above symptoms as “non-specific” meaning they are common to a number of illnesses. In fact, healthy people also experience fatigue, muscle aches, and insomnia, as well as many other symptoms on the list, but what marks ME/CFS symptoms as unusual is that they worsen after exertion. They are also distinguished by their severity, frequency and duration. ME/CFS symptoms can be incapacitating, they can be experienced daily, and symptoms may last for years.

Below is a list of my ME symptoms which I have put together. I will try to revisit this list again sometime in the near future to elaborate and further explain how these items affect me and better describe in case there is any confusion. But for now, this is the quick and dirty list. Much of these symptoms are very common and regular symptoms with a few of them being more rare symptoms for me. A fair number of the symptoms range in their levels as far as how severely I am affected. And just thinking now I am remembering even more things that didn’t make the list.

I wonder if you are thinking that you too have a list of symptoms.
If it is all the symptoms you have ever experienced in your life,
the past 20 years,
ones you typically experience on a regular basis,
which you can say keep you awake at night,
have robbed you of so much sleep that you slept less than 2 1/2 hours a night,
may have even slept that short a period of time for multiple  years,
with the longest chunk of time sleeping being 20 minutes,
keep you doubled over in agony,
prevented you from being able to concentrate,
stole your ability to communicate,
had you being dismissed by doctors,
might make you feel as though a particular illness is getting to be a bit ridiculous and it’s long past time that it should be over,
certainly past time that you should be taken seriously by your physicians,
absolutely past time that your government should be considering it to be a real illness
putting their best teams on it to research for a cure
or at the very least treatment.

MY M.E. SYMPTOMS

·         Abdominal pain (non-specific), diarrhea, nausea, gas, irritable bowel

·         acne – painful

·         allergies

·         New allergic reactions to medicines, food, and other substances

·         Aphasia (word finding) Word searching or saying the wrong word

·         asthma

·         Attention deficit disorder (inability to concentrate)

·         Blackouts

·         blepharitis

·         blurred vision

·         bone pain

·         “Brain fog”, “cloudy”, “spaced out”

·         atypical chest pain

·         Calculation difficulties

·         Canker sores

·         poor circulation

·         chronic headaches

·         clumsiness – bump into doors, walls, stumble over feet, drop things/difficulty holding onto things

·         cluster headaches

·         Cognitive function problems (Difficulty focusing, concentrating)

·         cold extremities  (fingers, toes/hands, feet)

·         collapsing/fainting

·         Constant dizziness

·         Constant exhaustion

·         Constipation

·         Cough, dry

·         De quervain’s Tendonitis

·         difficulty concentrating

·         dizziness, loss of balance, stumbling into walls, doorways

·         dry eyes

·         dry skin

·         dysphagia (difficulty swallowing)

·         ear pain

·         ENT sensitivities

·         eye pain

·         facial pain

·         Fasciculation’s (involuntary muscle twitching)

·         Fatigue (characterized as a profound loss of energy) mental and physical exhaustion similar to post-surgery and near death

·         Low-grade fever or feeling hot often

·         Flickering vision

·         Flu-like malaise, feeling “sick all over”, or “poisoned”

·         Flushing, rash

·         General muscle weakness

·         GERD

·         Hair loss

·         Hand tremor

·         headaches

·         “Headaches…

·         Chronic headaches

·         Cluster headaches

·         Migraine headaches

·         Sinus headaches

·         Tension headaches”

·         Heart palpitations

·         Hoarse voice, sore throat

·         Home-bound – generally unable to leave home w/o severe repercussions; not enough energy and pain increases too severely

·         hot/cold sweats for no apparent reason

·         Impaired binocular fusion

·         Impaired Concentration

·         Impaired memory (words, names, instructions)

·         Impaired Sensory Gating (seeing too much)

·         Insomnia

·         Intensified flu-like systems approx. 24 hours post exertion

·         Interstitial Cystitis

·         Irritable bowel

·         itching

·         Joint pain

·         Legs collapse

·         loss of circulation in arm/hand overnight

·         Low body temperature

·         Painful, swollen lymph nodes, especially on the neck and underarms

·         Memory loss

·         migraines

·         Dry eyes and mouth (sicca)

·         Muscle twitches

·         muscle pain

·         muscle weakness, severe

·         Muscle and joint aches with or without “trigger points”

·         nausea

·         Neck pain

·         Night sweats

·         Numbness or tingling sensations

·         olfactory sensitivity

·         (orthostatic intolerance) Symptoms worsen when standing up

·         Rash of herpes simplex or shingles

·         Restless Leg Syndrome (RLS)

·         paralysis

·         Paresthesia (subdermal “sunburn” sensation on forearms and abdomen)

·         Post Exertional Malaise (PEM) Worsening of symptoms after physical or mental exertion

·         Photophobia (light sensitivity) and increased sensitivity to noise, smells, touch

·         POTS, Orthostatic Intolerance (OI)

·         Pounding heart w/I minutes after eating, from simply sitting up, standing, climbing stairs, exertion

·         Severe premenstrual syndrome (PMS) or exacerbation of symptoms before and during period

·         pulsing sound in head, like whooshing or a drum brush

·         Rigors (severe chills & violent shaking)

·         ringing in ears (tinnitus)

·         “Seasonal” allergies which last year round

·         Shortness of breath

·         Sinus headache

·         Sinus induced migraines

·         Sleep disturbance, unrefreshing sleep

·         Sleep Inversion (day/night – delayed phase sleep disorder)

·         Sore  throat

·         Sound hurts

·         Spasms or convulsions

·         Spatial disorientation

·         Speech difficulties; Difficulty moving the tongue to speak, tongue tied (slurred words)

·         sweats – general, overheat w/ minimal exertion

·         swelling/mass behind left ear

·         Swollen lymph nodes

·         Changes in taste, smell, hearing

·         Temperature and weather sensitivity

·         Thermostatic instability

·         tingling fingers, feet & toes)

·         Transient rash (on trunk and thighs)

·         Unrefreshing sleep (more tired AFTER sleep)

·         Urinary frequency, urgency and discomfort

·         vertigo

·         Changes in vision

·         Visual disturbances

·         Unusually Vivid dreams, nightmares, or lack of dreams

·         Difficulty walking (shaking, collapsing muscles, shuffle when walk, difficulty lifting feet to walk, bumping into walls/objects)

·         Weight changes, usually loss followed by gain

·         Weight gain (from steroids)

·         weight loss – unexplained

·         Difficulty reading (blurred vision, inability to concentrate, dizziness, nausea)

·         Difficulty focusing/concentrating – unable to watch tv/movies

·         Inability to multi-task – requires too much energy for concentration, causes overheat, pain, irritability, black out

·         Soft-spoken – unable to get enough air in diaphragm/behind words, requires too much energy

GENERAL PAIN

·         Bladder pain from IC

·         Bone pain 

·         Bowel pain 

·         Calf strains and knots 

·         Eye pain: blepharitis, dry eyes, red eyes 

·         Foot and ankle pain 

·         GERD pain: chest, esophagus and sometimes stomach 

·         Headaches: cluster, sinus, tension, migraine 

·         IBS pain: bowels and back 

·         Joint pain 

·         Lower back pain 

·         Muscle knots

·         Muscle pain 

·         Needles 

·         Organ and tissue pain

·         Ovarian pain

·         Rotator cuff pain 

·         Sciatica pain 

·         Shin splints 

·         Shooting Nerve pain, especially in neck and head 

·         Sinus pain 

·         Skin pain 

·         Spinal pain 

·         Tingling and stinging in fingers and toes 

·         Toe pain from infection and FM

·         Whole body pressure pain from FM

·         Wrist pain