Welcome to my page of quotations about fibromyalgia, chronic pain, and chronic fatigue. Fibromyalgia still carries a social stigma in America, as do CFS, mental health issues, and some other medical areas that can be difficult to accept or understand if you’re not personally affected. However, these disorders are very real and can destroy lives. We need better education and support, as well as more focus on preventive medicine and holistic healthcare. Here are some quotes and sayings I’ve collected to help sufferers get through their days and hopefully feel a little less alone in their anguish.
There are nearly forty-six miles of nerves in the human body, and fibromyalgia, you get on every single inch of them. ~Author unknown
People think those with fibromyalgia are just faking it. Actually, they’ve got it backwards — we’re faking being well. ~Author unknown
It feels like all my muscles want to throw up! ~Malcolm Potter, at age 10, son of Claudia Craig Marek, co-author of What Your Doctor May Not Tell You About Fibromyalgia, by R. Paul St. Amand, M.D., as quoted in the 2019 edition, in answer to “What is fibromyalgia?”
I only get one life, and I will not let fibromyalgia take the joy from living it. ~Morgan Freeman
How the hell did I survive any year? You just do it. You force yourself to get up. You force yourself to put one foot before the other, and God damn it, you just refuse to let it get to you. You fight. You cry. You curse. Then you go about the business of living. That’s how I’ve done it. There’s no other way. ~Elizabeth Taylor, quoted in J. Randy Taraborrelli, Elizabeth, 2006 [Taylor suffered multiple health issues.
I’m so tired, my tired is tired. ~Internet meme
Not only is it normal, but it is also healthy to mourn the loss of the old life that Fibromyalgia took from you while rejoicing that you still have a life. ~Troy Wagstaff, 2015, Fibro Champions Blog, CallahanWriter.com
I wake up tired
I stay up tired
I go to bed tired.
I wake up in pain
I stay up in pain
I go to bed in pain.
I wake up with hope
I stay up with hope
I go to bed with hope.
Fibromyalgia is a pain in the neck — and my shoulders, head, elbows, knees, back, hips, feet… sometimes even my hair hurts. ~Internet meme
In fibromyalgia, all treatments are geared toward helping people sleep better. If we can improve their sleep, patients will get better. ~Steven Berney, M.D., Chief of Rheumatology at Temple University Health System in Philadelphia, quoted in Jeanie Lerche Davis, “Living With Fibromyalgia and Chronic Fatigue,” WebMD.com, 2007
Fibromyalgia, you slow me down but you ain’t stoppin’ me! ~Author unknown
Lady Gaga struggled with unnamed chronic pain for many years before going public with her fibromyalgia diagnosis. In a September 2017 press conference she said, “There is an element and a very strong piece of me that believes pain is a microphone. My pain really does me no good unless I transform it into something that is. I hope that people [who] struggle with chronic pain know they are not alone.” ~Variety.com (R. Setoodeh) & Today.com (J. Curley) [mash‑up quote
Sometimes “I’m fine” just means “I have the strength to carry on.” ~Author unknown
Chronic pain sufferers tend to minimize their pain to try to seem as normal as possible. We don’t want to be perceived as complainers so we keep much of our pain experiences to ourselves. ~Author unknown
With fibro, getting lucky means walking into a room and remembering what I came in for. ~Author unknown [Referring to the mental fog, brain fog, or fuzzy brain associated with fibromyalgia known as “fibro fog” or “fibrofog.”
The ten million Americans currently struggling with these debilitating symptoms get very little help from their doctors. Research has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it is a “real” illness. The fact that it primarily affects women has contributed to its categorization as a second-class or “wastebasket” diagnosis. The stigma attached to fibromyalgia — both having it and treating it — is why I half-seriously refer to it as the F‑word of medicine. ~Ginevra Liptan, M.D., The FibroManual: A Complete Fibromyalgia Treatment Guide for Your and Your Doctor, 2016
Paingry: A state of anger caused by long-term pain. ~Author unknown
Fibromyalgia Cat in the Hat:
I cannot sleep
I hurt like [bleep]
My memory shrinks
My hearing stinks
Keen sense of smell
I feel like hell
My mood is bad
I feel so sad
My body aches
My leg it shakes
We need a cure
That is for sure!
~Author unknown [a little modified from an anonymous poem I saw on the Web in 2018
In fibromyalgia, normal sleep patterns are disrupted and sleep is of very poor quality: light, choppy, and lacking the normal periods of “delta wave” or deep sleep. Studies consistently show that patients with fibromyalgia don’t spend much time in deep sleep, and the deep sleep they do get is interrupted by fast “wakeful” brain waves (alpha waves) that are normally only seen in the awake brain, a phenomenon called “alpha-wave intrusion.”
The cause of alpha intrusion seems to be the stress response system, which in a healthy person is quiet at night, but in fibromyalgia remains continually active. The brain won’t allow itself to fully sink into deep sleep because it’s trying to remain awake in order to fight off a threat by “sleeping with one eye open.” Deep sleep in fibromyalgia shows a choppy pattern that is interrupted by frequent microawakenings. ~Ginevra Liptan, M.D., The FibroManual: A Complete Fibromyalgia Treatment Guide for Your and Your Doctor, 2016
There are many peculiarities in the general appearance and life-history of so-called “rheumatic” individuals which seem to indicate the existence of some constitutional anomaly. Even when, as often happens, they are outwardly robust, they seem unduly prone to functional derangements. They prove markedly susceptible to atmospheric disturbances — they swiftly and constantly react to environmental influences to which other persons, though placed in precisely the same circumstances, remain indifferent. Subjects complain much of headache, lassitude, fatigue, torpor, neurasthenia, mental irritability, and often depression of almost pathological degree. A state of painful fatigue is induced as well as gastro-intestinal derangements. Digestion of carbohydrates is impaired, gases in larger amounts are liberated, and intestinal bacterial flora undergo changes. Some researches by Brown in the Johns Hopkins Hospital Bulletin dealt with myalgia, by which term is understood “diffuse pain affecting certain muscles or groups of muscles, probably due to certain changes in their fibrous constituents.” In some types the disorder features a restlessness in bed. The legs are attacked as a veritable anxietas tibiarum is produced. The patient incessantly changes his position, until, spent with fatigue, sleep overtakes him. ~Drs. LL. Jones Llewellyn and A. Bassett Jones, Fibrositis, 1915 [altered
In some types there is no indication whatever of any local affection, the subjects complaining of nothing beyond a vague feeling of malaise, best described as the non-committal term “febricula,” or, to use the expression most in vogue among the laity, an “influenzal” of “feverish” cold. Attacks of arthritic, muscular, and nerve manifestations of fibrositis are often preceded by a sore throat. This malaise is attended by more or less severe aching pains in the back and limbs — of the muscles, bones, joints, or tendinous structures. The fleeting aches in the trunk and limbs, no less than the sense of malaise, render it irksome to the patient to be up and about, and he gladly resorts to bed or assumes a recumbent posture, pending the passage of this acute phase. In less severe cases the patient is able to pursue his ordinary avocation, though feeling listless and much plagued by a sense of unaccountable fatigue, which disinclines him for any effort or exertion. At the same time the floating toxins often irritate the fibrous coverings of the nerves, and fitful neuralgic pains add to his general discomfort. With this general body uneasiness there is associated a feeling of mental depression. Sometimes there is nausea or the bowels are sluggish. ~Drs. LL. Jones Llewellyn and A. Bassett Jones, Fibrositis, 1915 [altered
Indeed, to our mind there is little doubt that, if the primary onset of all cases of fibrositis were more narrowly investigated, it would be found that the subjects, though often considering themselves in perfect health, had for some time prior to the full development of the attack experienced symptoms clearly denoting functional disorder. ~Drs. LL. Jones Llewellyn and A. Bassett Jones, Fibrositis, 1915
How frequently do we see persons, previously immune, suddenly fall a prey to the affection on changing their mode of living, more especially in respect of diet! How well established is it that these subjects after unusual, though not necessarily excessive, indulgence at the table almost inevitably suffer from diffuse aching and stiffness in their fibrous tissues! Veterinary authorities have also noted the same swift response to dietetic indiscretions, of muscular rheumatism in horses, dogs, cattle, etc. ~Drs. LL. Jones Llewellyn and A. Bassett Jones, Fibrositis, 1915 [altered
Substitution of the Term “Fibrositis” for “Chronic Rheumatism.” — This suggested change in the nomenclature is the direct outcome of the observation, by no means modern, that in “chronic rheumatism” the basal anatomical lesion is one of inflammatory overgrowth, or hyperplasia of the white connective tissues. As far back as the beginning of the nineteenth century, Craigie, on anatomical findings, enunciated this dictum. It is therefore, we think, somewhat singular that the significance of this masterly conception was apparently lost sight of, until Sir William Gowers, in a notable contribution on the subject, re-emphasized the essential pathology unity of all the different forms of chronic rheumatism. In other words, the underlying condition is identical for the fibrous investments of a joint, the connective-tissue envelope of a nerve, or the interstitial tissues of a muscle. While the causal factors are diverse, their pathological influence is expended on the same anatomical structure — the fibrous elements. “Fibrositis” gives the condition “a local habitation and a name.” For, shorn of the term “rheumatism,” a more eclectic frame of mind is engendered to advance and clarify our knowledge of this common everyday affection. ~Drs. LL. Jones Llewellyn and A. Bassett Jones, Fibrositis, 1915 [altered
The fact is, that in the present stage of our knowledge, no specific cause can be adduced. In regard to drug treatment, we have not advanced much beyond our forebears. Treatment includes oral health; intelligent dieting directed towards modifying the character of the intestinal flora by means of a judiciously selected and varied diet; reduction of body-weight in obese subjects; wearing light, loose-fitting, and absorbent garments; hydrotherapy and hot-air baths; massage to improve circulation and promote a general feeling of well-being; active exercise proportionate to the age and strength of the patient, avoiding excessive exertion or a sedentary habit. Gradually increase exercise to the capacity of the particular individual; it must not be forgotten that the evil effects of fatigue or overexertion are readily induced, often with grave consequences. ~Drs. LL. Jones Llewellyn and A. Bassett Jones, Fibrositis, 1915 [altered
Here are some names I’ve seen in medical literatures for fibromyalgia and similar complaints: chronic rheumatism (1700s), chronic pseudo-rheumatism a.k.a. pseudo-rheumatic affection, gout with a difference, fibrositis (Gowers, 1904), chronic myo-fibrositis a.k.a. chronic muscular rheumatism, neuro-fibrositis a.k.a. fibrositis of the nerve sheaths, myalgia without anatomical lesion, neuralgic rheumatism, fibromalasia, psychogenic rheumatism, the invisible disability or the invisible illness, disorder of pain amplification, rheumatic pain syndrome, the irritable everything syndrome (Smythe, 1985), tender lady syndrome, syndrome of the nineties (i.e., 1990s), fibromyalgia syndrome, FMS, and FM. Some of the earlier terms overlapped with true rheumatisms and other conditions. The three main types of fibrositis in the early 1900s were categorized as gouty or pseudo-rheumatic fibrositis, infective fibrositis a.k.a. toxic fibrositis, and traumatic fibrositis, with further subtypes depending on the body areas affected, etc. [Collected from my “old-timey,” and some modern, fibro readings.
Original post date: 2018 Oct 30
1st major revision: 2019 Jun 20