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In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms – Part 1

  [ 44 votes ]   [ 1 Comment ]
By Health Rising • www.ProHealth.com • January 17, 2018


In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms – Part 1
Editor’s Note:  Do you sometimes find the symptoms of fibromyalgia and/or ME/CFS overwhelming?  At times, it’s difficult to distinguish between a fibro or ME/CFS symptom and something else.  I often consult Dr. Google to see if a new symptom is related to fibro, and this list of symptoms from Health Rising Forums is especially helpful.  Since this list is long, we’ll break it up into two posts.  Yes, we understand brain fog. You can find Part 2 here.
 
One 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.   
 
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 myself and I am disappearing. A little more each day.
Brain and Cognition
  • 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 five-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 ruins 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
  • Molasses Legs
  • Cement Legs
  • head and 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 it’s going to EXPLODE
  • The headaches are UNBEARABLE!
  • Smells and lights cause 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.


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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Article Comments Post a Comment

I can relate
Posted by: heyHay54
Feb 22, 2018
Some of the signs/symptoms described were worded better than I ever could have done it. Social exhaustion, cement legs, flu-like malaise, swimming through fog, energy of a sloth, hit by a truck, and gravity pulling me down. These were the ones I identified with the most. What am I suppose to do?
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