In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms

ME/CFS and FM Patients Describe What Having ME/CFS/FM is Really Like

  1. Cort
    I would not wish this illness on my worst enemy (if I had one), but sometimes I wish the naysayers could live in our bodies for a few days..

    The symptoms are taken from a thread on the Health Rising Forums in which people with ME/CFS and FM were asked to describe their symptoms
    Some descriptions have been edited for clarity and some are in multiple categories

    Blood Vessels
    • veins have white glue in them
    • pain that's like fire ants are swarming through my veins and biting along the way spreading their venom and pure burning inflammation
    • blood vessels feel like they're on fire
    • pain in the blood vessels, particularly my right arm and hand that feels like fire when touched
    • fire in my veins
    • Like I have bad blood flowing through my muscles.
    The Body Overall
    • a fine antique vase with a hairline crack... that a tiny tremor or a major shift, almost anything can make shatter into a thousand little jagged pieces.
    • I feel as if I have been thrown off the Empire State Building with resulting crushed bones and then had my entire body roasted by a blowtorch and then submerged in subarctic water
    • My body is just plain giving up on me.
    • My body, poisoned...sick and poisoned...chemically toxic. At my worse I feel as though I have been poisoned and am dying.
    • This illness affects every part of my body and my mind, and managing it is a full time job.
    • All day long I fight the flu that won't get better, the pain in my muscles that won't get better and the complete fog I swim through that never goes away.
    • Symptoms come and go but range from flu-like malaise to muscle cramping or weakness (definitely not trustworthy enough to walk without supports), difficult breathing, sensitivity to foods and stimulus, social exhaustion, mental blowouts, etc.
    • I am trapped inside my self and I am disappearing. A little more each day.
    Brain and Cognition

    brain-chemicals.jpg

    • feels like my brain has mold in it
    • brain feels like it's on ice - slow and sluggish
    • bruised brain (feels like my brain has been shaken around inside my skull to the point of being 'bruised')
    • mush in my brain
    • smoldering brain
    • brain prickles (pin point prickly sensations in brain)
    • liquid brain (like my brain is drowning in oil)
    • It feels like my brain is swollen, like it's too big for my skull.
    • My brain feels like a soggy sponge wrapped around a buzzing whirring toy. There's this over wired center surrounded by sludge.
    • My brain feels too heavy for me to hold up my skull
    • Toilet head...my head feels like it is a toilet...filled with sewage
    Cognition / Brain Disconnect
    • a memory on par with my 88-year-old mother's
    • I speak in 5-word staccato because I'm trying to get my thought out before I forget what I'm saying. Five words is about all my brain can spit out at any given time
    • not being able to work out how to write and spell
    • I can't count the number of times my limbs won't do what my brain tells them to
    • mind disconnected from arms, hands and feet ( causing spilling, fumbling and dropping things)
    • as though my brain is Swiss cheese: information goes in, but into the black holes, it disappears and I am unable to retrieve it
    • I feel like I'm in a coma and can hear everything going on around me but can't really participate.
    • I'm like a zombie, the walking dead, with flaccid limbs and a flat dead-eyed saggy-faced slack-mouthed expression.
    • NEVER feeling awake, the permanent haze is dangerous as it completely ruin my spatial awareness
    Exercise
    • terrible burning in my legs after exercising, no matter if the exercise was only using my arms
    • burning pain in muscles after exercise
    • When I exercise I feel like I am dying
    Fatigue and Exhaustion

    [​IMG]

    • Molasses Legs
    • Cement Legs
    • head & legs feel like heavy dead weights, hard to drag along
    • run out of energy very quickly, like a sloth
    • upon lying down - it's like gravity is now extra or the titanic is dragging me under
    • legs feel like lead
    • feeling gravity's force on every inch of my body
    • feeling like I'm filled with wet cement.
    • like falling down a deep, dark hole and trying to climb up that hole, only to slip down again and again (exhaustion)
    • I feel dead and am waiting for a cemetery caretaker to take me to my grave
    • 'Limbs of Concrete'
    • Being too exhausted to take off my coat, stand, butter my bread, or undress
    • leaden legs
    • as though someone had come along with a syringe and had withdrawn all my energy
    • arms and legs feel like they have heavy weights on them
    • My feet are glued to the floor.
    • There's this feeling that gravity is pulling me down when I try to take my body's weight.
    • When I have weakness it starts from deep within, that feeling of no reserve. And then my body feels like a wet noodle...I can't even clench my fist the weakness is so pervasive.
    • I often feel like I ran a marathon then went on a 3 day no sleep party bender
    • I feel like I got hit by a truck and I'm trying to peel myself off the ground (or out of bed)
    Head
    • head droops like a rag doll, just takes too much energy to keep my neck straight
    • like someone is hitting my head with a hammer (migraines)
    • my head feels like its going to EXPLODE
    • the headaches are UNBEARABLE!
    • smells and lights causes headaches.
    • a very strained feeling in my head
    • like someone is blowing either very hot or very cold air through my nasal/throat cavity
    • It feels as if someone is blowing up a balloon in my head and it's about to explode
    • like I've been punched in the face.
    • like an ice pick going RIGHT through my eye (headache)
    • it feels like my head is a pressure cooker and it is boiling and swelling...I can feel the throbbing of it...everywhere.
    Muscles, Skin and Joints
    _Woman-Back-Pain-371653.jpg

    • burning muscle pain
    • like the flesh of my forearms is coming off the bone
    • "almost-parallel-universe" pain - a sharp, shingles-like pain occurring one part of the body (such as left big toe) and then and almost immediately, a nanosecond later, another seemingly unrelated part (such as left rib cage)
    • a screw driver slammed into my shoulder blade and twisted
    • muscles are petrified wood and my tendons are like old rotting rubber bands.
    • a curved X steel beam has been slammed through the upper left of my head
    • someone spread finely crushed glass into all my muscles (and then I moved)
    • muscles aching and throbbing
    • my bones are creaking and grinding like my grandmother's and my muscles and tissues, especially ribs, are stinging and aching.
    • wind is painful on my skin
    • a muscle spasm day: veins pop up to the top of my skin, bladder, throat, stomach, throat spasm, whole body goes goes goose pimples at 98 degrees out.
    • touch hurts. showers hurts. wrinkles hurt.
    • muscle burn: It feels as if acid has been poured over my body
    • deep tissue aches, almost to the bone
    • soft touch or the feel of air moving against my skin can be exquisitely painful
    • hulk arms (the muscles of my arms and shoulders feel painful, and huge & swollen - as if I look like the Hulk)
    • it feels like an army of thugs is belting me continuously with baseball bats
    • muscles feel like lead and jelly all at the same time
    • feels like there are fibers inside the muscles that tingle painfully

    Heat and Cold
    Kindling.jpg

    • burning muscle and skin pain
    • blood vessels feel like they're on fire
    • feeling hot but sweat is cold or feeling cold and sweat is hot
    • cold eyeballs and nose
    • burning brain
    • brain feels like it's on ice - slow and sluggish
    • painfully freezing feet but if I cover them I immediately get feverish symptoms
    • I go between blazing hot and shivering cold more times a day than there are kernels of popcorn at a movie theater.
    • I feel as if I have been thrown off the Empire State Building with resulting crushed bones and then had my entire body roasted by a blowtorch and then submerged in subarctic water
    • skin is on fire
    • like someone is blowing either very hot or very cold air through my nasal/throat cavity
    • fibers in my muscles are on fire
    • I constantly have to take the sheet off my legs and then put it back on as I get chills when it's 90 degrees outside
    Limbs - Legs, arms, hands and feet
    • My legs constantly feel like someone is torturing me with dull, rusty instruments, an electrified chainsaw and thousands of electric bees, over and over.
    • knees feel like someone took a hammer to them
    • knuckles feel like there are pliers squeezing them
    • hands and knees sharp, ice pick-like pain
    • painfully freezing feet but if I cover them I immediately get feverish symptoms.
    • having miniature hedgehogs walking backwards in a line down my legs (sciatica pain)
    • pain in the blood vessels, particularly my right arm and hand that feels like fire when touched
    • Superman syndrome, where my shins and calves are being squeezed and crushed like he's trying to make carbon into a diamond - perhaps the worst pain I've experienced in my life - 11/10.
    • deep bone pain on my lower hip that radiates to my back and groin
    • crushing and burning pain in the lower feet.
    • muscle cramps and spasms in my calves that are so pronounced you can see them jumping under the skin like worms
    • bottoms of my feet feel bruised like they have been struck over and over again with a 2 x 4.
    • excruciating lower back pain that radiates down one leg
    • calves and legs and the TOP of my feet have a deep ache that feel like blood is pooled and not moving from the knee down.
    • ankle garters (feels like I'm wearing garters on my lower calves that are too tight & cutting off circulation)
    • wrist suddenly "explodes with pain"
    • pooling of blood in the feet like after a hot bath - but 200 x worse and ALL the time
    • electricity is running through my feet.
    • tiny little fish are nibbling at my leg muscles
    • painfully freezing feet
    • my joints are being unscrewed/wrenched apart resulting in ball of fire feeling in particularly my arms & hands
    Sleep and Waking Up
    SleepWoman.jpg


    • Sleep is a series of lurchings on the surface of wakefulness
    • feels like I climbed a mountain in my sleep then am trying to wake up and do it again
    • someone beat the shit out of me when I was sleeping
    • Waking up, THAT'S too much exercise! I'm EXHAUSTED!
    • When I wake up, I feel like I had a car accident during sleeping: body is burning, everywhere - back, legs (restless legs), arms, even hands and almost all fingers. I feel like I slept for....10 minutes (I slept for 11/12 hours)
    • Getting up in the morning is like crawling out of quicksand or thick, sticky mud.
    Sound, Light, Odors, Touch
    • can't tolerate sound or light
    • smells and lights causes headaches
    • Everything seems too bright, too noisy, too fast
    • the feeling of hair touching my face or a tag from clothing rubbing my skin can drive me crazy. Sometimes my skin crawls for no reason, it feels like there are ants all over my body and there's nothing there.
    • creepy/crawly sensations
    Standing Up and Disorientation
    • I stand too long, I get dizzy, lightheaded, start losing my hearing, and my vision goes black
    • I get dizzy, lightheaded, and just started getting that blackout feeling like I am going to faint.
    • When I walk down the hallway of my apartment building I weave like a drunken fool! I actually smash into walls, even inside my house.
    • I had the sensation of everything around me moving as if I was in the center of an earthquake. Even laying down the sensation persisted
    • It just feels like the floor is moving, rolling, slow motion and inconsistent. I don't get dizzy luckily. But for a few seconds I feel like my body is trying to keep from falling down- as if my knees are sloppy or about to give out. Or maybe if could be described as a brief case of spaghetti legs.
    • I had a feeling like there were tremors...........but no one else was feeling it. The sensation got so bad that it felt like the floor was coming up to my waist. For me I think it was the result of pushing way too far..
    • I walk like Frankenstein's monster
    Torso (Heart, Back, Shoulder and Chest Pain)
    • Knitting needle pain - a knitting needle stabbing me in my heart!
    • my chest feels like there's an elephant resting on it
    • deep tendon pain in my upper back
    • Feels like fingers are constantly pressed deep into my shoulders (underneath the skin and touching the bone)
    • excruciating lower back pain that radiates down one leg.
    • I've been stabbed in the heart with a skewer
    Others
    • I don't feel human
    • It feels like I am walking on bone.
    • I felt like an elderly person when I hadn't even been eligible for my drivers license yet.
    • The pain causes me to go some where else in my brain...
    • searing, broadcasting pain in all mucous membranes
    • weird painful flushing feeling mostly in head and upper body (fluey sensations)
    • buzzing (like my whole body is buzzing or vibrating)
    • crawling sensations
    • waddling like a duck
    • internal tremor: like a car idling or like feeling the electricity go through the cord while the vacuum is on.
    • I feel poisoned. I feel like an alien infection has taken over my body
    • like little bugs are taking little tiny bites into my nerves and muscle fibers
    • My bones are vibrating
    • Electricity is running through my feet.
    • I just got hit by lightning.
    • a feeling that everything is inflamed and sort of throbbing and tingly but numb all at once, including my thoughts

Recent Reviews

  1. Mary Hamilton
    Mary Hamilton
    5/5,
    Symptoms exactly head on!
  2. Recliner
    Recliner
    5/5,
    This resource makes me want to cry with relief!
    Some of the craziest symptoms that I have like "cold nose and eyeballs" and "hot body with cold sweat or cold body with hot sweats" are listed here!
    I never realized that my eyes were actually cold!
    Bless all of you!!
  3. susanna
    susanna
    4/5,
    I have many of these symptoms, plus prickling and burning in the joints. My knees and ankles are about to give way.
  4. Katie
    Katie
    5/5,
    Yes, yes and yes. I am definitely not alone with my vast array of symptoms.
  5. Outasync
    Outasync
    5/5,
    I can identify with many of these. Horrible to experience, but sort of comforting to know I'm not alone.
  6. Marilyn
    Marilyn
    5/5,
    As a caregiver for my daughter who was diagnosed with CFIDS in 2001 by Dr. Klimas, these descriptions help me understand what she is trying to tell me at times when she is unable to explain clearly.
  7. Fern
    Fern
    5/5,
    I can relate to many of these statements - unfortunately.
  8. Barbara Beck
    Barbara Beck
    5/5,
    It's candid. It's real. It's from the "horses" mouth. For me, it's esp. valuable to read that all the weird, seemingly unrelated, crazy symptoms that cause me to even doubt myself are in fact, NOT idiosyncratic and maybe I'm not making it up after all.I'm not crazy after all, at least not on this basis! Thanks for this reassurance and all the info you provide.
  9. Maureen
    Maureen
    5/5,
    Perversely reassuring that I'm not alone in having many of these descriptors of ME aka "Living Death".....