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In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms – Part 2

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Editor’s Note: Do you sometimes find the symptoms of fibromyalgia and ME/CFS overwhelming?  At times, it’s difficult to distinguish between a fibro or ME/CFS symptom and something else. This is Part 2 of patients describing their symptoms from Health Rising Forums.  You can find Part 1 here.
Friendly reminder:  always check new issues with your physician to make sure they are not a sign of a different illness. 
Reprinted with the kind permission of Cort Johnson and Health Rising.   

Muscles, Skin and Joints

  • 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

  • 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

  • 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


  • 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 driver’s license yet.
  • The pain causes me to go somewhere 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

About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.

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2 thoughts on “In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms – Part 2”

  1. Meaness says:

    I also have fibromyalgia my mind make me feel so stupid that I can’t remember what I was going to say and thinking is impossible. If I can’t blurt out what I want to say then I cant remember the words to say and trying to pronounce words seem impossible

  2. catsarcastic says:

    I’m wondering if anyone else out there has gotten to the point where a limb was made useless? I have what dr’s are calling “drop foot” and they tell me it’s caused by damaged nerves.
    I’m wondering if perhaps it’s fibro causing it?
    And I’d like to add that there are so many other symptoms to fibro.
    The feeling of bulging muscles, I.B.S., mimic heart attack, feeling like your fingers are sliced at the tips. And so many more!
    I HATE having this disease. Even my daughters won’t believe that I have a serious disease. Those around me who should be my biggest supporters think I’m exaggerating my pain and illness.
    I think that fibro is the most misunderstood and misdiagnosed disease ever.
    Thanks for reading.

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