The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

Discussion in 'Symptoms' started by Cort, Aug 2, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    What ME/CFS and Fibromyalgia Are REALLY Like

    It's likely that many of the symptoms people experience don't really make it into surveys. A descriptive and a poetical element is missing. The richness of the symptom presentation in these diseases is not protrayed. That's a shame - these are very symptom-rich illnesses...

    This thread is the opportunity to rectify that by getting creating and providing your own unique description of the symptoms you experience.

    One of my favorite symptom descriptions is "cement legs", another similar one is "molasses legs", and the symptom I experience most that doesn't mentioned much is "burning feeling muscles and skin - particularly after exercise".
    Last edited: Aug 4, 2015
  2. Merry

    Merry Well-Known Member

    As I said in another thread, blithely taking the thread off topic, I have often experienced pain in blood vessels that I think of as the blood vessels being "on fire." This is not a burning sensation but an ache in the blood vessels, which are tender to the touch. I think of the blood vessels as inflamed; I equate the word "fire" with inflammation.

    I do experience the burning in muscles and skin that Cort speaks of.

    One of the most distressing, painful symptoms, which, fortunately, I don't experience often, is the feeling that the flesh of my forearms is coming off the bone.

    A sharp pain that I feel in the left side of my chest I refer to as my "knitting needle" pain. Yes, a knitting needle stabbed in my heart!

    A weird pain that lately I've had frequently is I'll feel a sharp pain in, say, my left big toe and almost immediately, a nanosecond later, a sharp pain in my left rib cage. It's the precision and intensity of shingles pain. I'm intrigued, first, by how with this pain body parts are connected and, second, by the slight time delay. Should I call it my "almost-parallel-universe" pain?
    susanna, Tami, brenda and 3 others like this.
  3. JennyJenny

    JennyJenny Well-Known Member

    My hair hurts.
    My eyeballs are cold.
    My nose is cold.
    I feel like a screw driver has been slammed into my shoulder blade and twisted.
    I feel hot and my sweat is cold OR I feel cold and my sweat is hot.
    I feel like a curved X steel beam has been slammed through the upper left of my head... But it comes and goes.
    It feels like my veins have white glue in them, my muscles are petrified wood and my tendons are like old rotting rubber bands.
    My brain is burning.
    My brain feels like it has mold in it.
    I could go on but now I am just showing off. lol
    susanna, Tami, Wendy Hart and 7 others like this.
  4. Edie

    Edie Active Member

    I figured out one day, how to describe my FM pain. It's like someone inserted fine crushed glass into all my muscles, and then I moved!
    Tami, Tammy7, brenda and 4 others like this.
  5. Edie

    Edie Active Member

    Tami, Lettie, Sarah R. and 3 others like this.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    My god! :eek: I'm starting to feel very lucky! This is not a thread for faint of heart :bag:

    Thanks for taking that thread off-line and prompting this one :)
    Last edited: Aug 3, 2015
    Tami, JennyJenny and Merry like this.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I like that Edie - that resonates with me.....When I overdo it every movement seems to hurt like that. Very evocative.
    Tami, Eva Nagy and JennyJenny like this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    You show off you...You do have a touch, I must say. You are an artist :artist: of symptom descriptions (and I add a new smiley too my list...)

    I like the brain mold one...I don't want to even think about the steel beam or the screw-driver :stop:
    Last edited: Aug 3, 2015
  9. Merry

    Merry Well-Known Member

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  10. Kini

    Kini New Member

    When I open my eyes in the morning I don't want to move. I know it's going to hurt immediately. My knees feel like someone took a hammer to them, my knuckles feel like there are pliers squeezing. (But only certain fingers) Low back, just ouch!
    On low energy days just getting out of bed takes a giant amount of effort. It feels like I climbed a mountain in my sleep then am trying to wake up and do it again.
    kevin Feldman, Tami, mischief and 5 others like this.
  11. PamJ

    PamJ Active Member

    The major feeling is that someone beat the shit out of me when I was sleeping.
    But there are a thousand other descriptions. My head & legs feel like heavy dead weights, hard to drag along. My muscles ache & throb, except for my hands and knees, which have sharp, ice pick-like pain. My brain feels like it's on ice - slow and sluggish. I run out of energy very quickly, like a sloth, but the pain increases when the energy is gone. My chest feels like there's an elephant restingon it, like the comercials for COPD. My stomach is so sensitive, most anything can leave me with intense cramping & diahrea. If I stand too long, I get dizzy, lightheaded, start losing my hearing, and my vision goes black.
    I often say I need a full-body transplant. But this wouldn't help, because my brain is also messed up.
    Tammy7, Tami, Debbie Iverson and 4 others like this.
  12. Telula

    Telula Member

    I get pain that's like fire ants are swarming through my veins and biting along the way spreading their venom and pure burning inflammation.

    My legs constantly feel like someone is torturing me with dull, rusty instruments, an electrified chainsaw and thousands of electric bees, over and over.

    Getting up in the morning after anywhere between 0-6 hours of horrible sleep (sometimes no slee for a week at a time) is going to be so painful, but worse is I know even the act of lying down at night or anytime hurts so much, like gravity is now extra or the titanic is dragging me under, and my bones are creaking and grinding like my grandmother's and my muscles and tissues, especially ribs, are stinging and aching.

    My feet are always painfully freezing 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.

    When I exercise I feel like I am dying. And I feel even worse for a week after. A few months ago I tried to do a quick grocery shopping and that was so taxing on my system I was bedridden for a week. I couldn't even sit up or shower. I didn't feel human. I don't feel human.

    I'm in my twenties. I've felt this way and more, worse and worse since I was a kid. I felt like an elderly person when I hadn't even been eligible for my drivers license yet.

    Something needs to change.
    Tammy7, Tami, ladybug64 and 5 others like this.
  13. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Fire ants ...ouch...:hurting:
    Last edited: Aug 3, 2015
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  14. Beckyterr

    Beckyterr Member

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  15. Willowtree

    Willowtree New Member

    I once described the pain down the back of my legs (sciatica, I later discovered) as having miniature hedgehogs walking backwards in a line down them. The doc got it immediately, and it amused the other staff too.
    Tami, mischief, Merry and 4 others like this.
  16. pat0814

    pat0814 Member

    I, too, am experiencing the pain in the blood vessels, particularly my right arm and hand and it does feel like fire when touched. I've had this illness for almost 30 years and this "sensation" is new, and only starting within the last few months. I'm having a veinous study done next week. Likely to be inflammation pressing on a nerve.
    AliceE, Tami, Merry and 1 other person like this.
  17. Beckyterr

    Beckyterr Member

    I describe Fibro and CFS as a fine antique vase with a hairline crack. It looks ok, unless you look closely. It is a rare vase, but now, because of the damage, it doesn't have the same value. But the worse part is that a tiny tremor or a major shift, almost anything can make it shatter into a thousand little jagged pieces.
    Katie, Merry, Ria Roegiers and 4 others like this.
  18. Steve

    Steve Active Member

    This is a great respite for my wife, who is wtf tired of hearing my symptoms, especially as they have worsened for the last few years. They're similar to others' descriptions but I have given some of them my own names.

    Generally, 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. Wait a minute and after that fall, am instead submerged in subarctic water, with tingling, " funny bone nerve pain" but everywhere, even hands.

    There's 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.

    There is a decade old deep bone pain on my lower hip, not pecerceivable as anything by MRI, that radiates to my back and groin as a wholly debilitating awfulness.

    Of course, I have the requisite neuro feet, crushing and burning pain in the lower feet. Sometimes I have muscle cramps and spasms in my calves that are so pronounced you can see them jumping under the skin like worms, wowing the inept ER doc who prescribed a week of quinine for an exotic type of spasms I knew they weren't and forty bucks down the drain, with an incredulous pharmacist who called me in to discuss the prescription.

    I have a deep tendon pain in my upper back that immobilizes my left arm, as well as the common misnMed tender points, there's nothing tender about them in throat and neck tendons, sometimes up to my scalp in back.

    Occasionally my legs feel like lead and, a new CFS- like symptom is terrible burning in my legs after exercising, no matter if the exercise was only using my arms.

    I also have developed fatigue that wS not pRt of my illness for the lat 25 years. The overlap between FM and CFS symptoms experienced by a sufferer is roughly 50%, odd for me since pain, insomnia, and spasms were major symptoms.

    I also developed severe tinnitus 24/7 three years ago as my illness started to take a turn for the worse. I don't know if writing this is cathartic or reminds me, daily anyway, actually, of the 150 phenobarbital I've kept for 25 years, acquired in a lucky fluke when accidentally being discarded by a fallout shelter. They're my escape hatch.

    Like everyone, I have dozens more symptoms that come and go... costochondritis allodynia...etc., etc. These are invisible illnesses that make being alive challenging.
    Last edited by a moderator: Aug 3, 2015
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  19. Judi

    Judi Member

    -The bottoms of my feet feel bruised like they have been struck over and over again with a 2 x 4.
    - My skin is on fire, must be two miles from the sun.
    - Wardrobe???? Pajamas day and night.
    - I walk like Frankenstein's monster
    - My elbow is only comfortable in a saluting position.
    - Feels like fingers are constantly pressed deep into my shoulders (underneath the skin and touching the bone).
    - My head droops like a rag doll, just takes too much energy to keep my neck straight.
    Martinigal, Cort, Merry and 2 others like this.
  20. pat0814

    pat0814 Member

    Mush in my brain,
    Body in pain,
    Fire in my veins,
    Muscles are drained,
    Sweat falls like rain,
    Patience is strained,
    Since I haven't been slain,
    I must have been hit by a train!
    fibroite, Recliner, tjo and 11 others like this.