Published on February 21, 2019 by Dan Neuffer
Last updated on February 9, 2021 by Dan Neuffer

56 comments

If you are asking “What is fibromyalgia”, you may be surprised that it is not just about pain! Whilst symptoms of widespread pain are a core symptom of fibromyalgia, so is sleep disturbance, fatigue and cognitive impairments and there are many more symptoms.

The word Fibromyalgia is derived from the Latin word fibra (fibre) and Greek words myo (muscle) and algos (pain). This suggests the condition is one of fibrous tissue and muscle pain, however, the types of pain that people experience is actually much more complex than the understanding that existed when the condition was named.

But fibromyalgia is about a much greater range of symptoms than pain, so it is no surprise why with a name like that, there is so much confusion around what fibromyalgia is. This disconnect between the name and the actual symptoms has given rise to the term ‘fibromyalgia syndrome’ and is often abbreviated as FMS.

Fibromyalgia Symptoms

When people ask 'what is fibromyalgia syndrome', they often think the answer has solely to do with pain.  However, whilst there is a core set of symptoms, the extended list of symptoms is large and varies between patients.

The core symptoms include:

  • Various form of pain including deep muscle pain, flu-like aches and stabbing or burning pain as well as pins and needles
  • profound fatigue not alleviated by rest;
  • cognitive impairment;
  • sleep disturbance;

But there can be many more symptoms of fibromyalgia including nervous and digestive system symptoms and sensitivities to stimulation and foods and medicines. For a full list please explore the article on fibromyalgia symptoms.

Fibromyalgia symptoms often exacerbate when triggers occur, which is called a flare-up. The triggers can be due to a range of things including physical or mental stress or strain, exposure to certain foods or chemicals or even a change in the weather. These fibromyalgia flare-ups can last days, weeks or even months. 

Severity of Fibromyalgia

Fibromyalgia syndrome is a serious and disabling illness that affects people to varying degrees.  The severity can fluctuate over time leaving people very ill and house-bound at times, but being able to engage in some study or work when the illness is milder. However, even when people experience milder fibromyalgia, it usually impacts their ability to engage in leisure and social activities often leading to isolation.

Fibromyalgia is real

Having discussed the range and severity of Fibromyalgia symptoms, it might seem strange to talk about whether fibromyalgia is real or not.  However, with so many of the symptoms difficult to measure and based on patient reporting, the myth that the illness isn’t real can occur. Unfortunately, this is sometimes expressed by suggesting that patients are hypochondriacs, depressed or attention seekers making up their symptoms. 

This is extremely distressing for a patient, given the genuine symptoms they are experiencing. People already find it difficult to deal with the illness and are often very vulnerable, so fibromyalgia advocacy and awareness play an important role in supporting people experiencing fibromyalgia.

Another reason why some people think the illness isn’t real, is that they view the symptoms as a collection of separate dysfunctions. However, once you understand the pathogenesis of the illness as described in CFS Unravelled, you can see that the different dysfunctions are connected and not a random coincidence.

Not only have I had this illness myself, but I have interacted with thousands of people experiencing this illness and I can categorically assure you that any suggestion that fibromyalgia isn’t real is simply not true and not fair.

Who gets Fibromyalgia

Anyone can experience Fibromyalgia Syndrome, although it is usually suggested that more women get the illness than men. However, fibromyalgia diagnoses are often not readily made and the difference in how men and women engage with their doctor may contribute to the difference in the fibromyalgia diagnosis rates between men and women.

It appears that family history plays a significant component in fibromyalgia diagnosis, which has given rise to there being a genetic component to the illness. However, whilst genetic predispositions occur for many illnesses, given the triggers seen at onset as well as other commonalities in the patient population, other factors within family histories may play a greater role.

Fibromyalgia is usually triggered by a significant stressor such as an injury, illness, emotional stress or other physical stressor such as exercise, child birth or surgical procedure.

Prevalence of Fibromyalgia Syndrome (Epidemiology of Fibromyalgia Syndrome)

Fibromyalgia rates reported vary drastically with some sources claiming rates as high 10% in the US, whilst the American College of Rheumatology states rates of 2-4% on their website.  One research paper that studied worldwide epidemiology of fibromyalgia reports the mean rate for women at 4.1%, for men 1.4% and overall at 2.7%.

However, given poor diagnosis rates for fibromyalgia, actual figures may be higher.

Cause of Fibromyalgia

Fibromyalgia is triggered by a large range of events including infections, toxic exposures, physical trauma or stress as well as psychological trauma or stress – this may be referred to as the etiology of fibromyalgia.

It is generally understood and reported that researchers have not found the cause of fibromyalgia, meaning they have not found the root cause or root mechanism of the disease and that they don’t understand the disease process (ie. the pathogenesis of fibromyalgia).

However, it may be more accurate to say that the cause of fibromyalgia is not widely understood or agreed upon.  The challenge for the medical community is that fibromyalgia affects multiple bodily systems and hence there can be multiple ways or disease processes that lead to the symptoms (the pathophysiology of fibromyalgia).

Fibromyalgia is also an illness with a large range of symptoms, many of which present in other diseases.  In addition, the vast majority of tests show either normal or somewhat abnormal function, as opposed to a definitive abnormality.   This reflects the fact that the body is in a deep state of dysfunction in fibromyalgia rather than a particular system/organ being “broken”. (such as in heart disease or Addison’s disease)

In CFS Unravelled, the complex dynamics and etiology, an explanation for the pathogenesis, pathophysiology and recovery mechanisms are proposed and explored in detail. Understanding the root cause and focussing on resolving it is key for recovery.

Since the publication of the book, we have seen a slow movements towards a concensus and demystification of the illness and the American College of Rheumatology has now stated on their website that fibromyalgia is a neurological health problem, and makes the point to state that it is not an autoimmune, inflammation, joint or muscle disorder.

What is Fibromyalgia - Summary

Fibromyalgia Syndrome is a neurological illness that affects every system of the body creating a large range of symptoms. It can occur at any age and can last a shorter time of six to twelve months or it can last longer. Some people experience full remission and can have a flare up again later in life, however some people experience a full and lasting recovery.

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Cindy Pezzin

I have had this illness for 29 years & Im still waiting for it to go into *Remission* if only it would. Fibro started after having a Hysterectomy, that is the only large incident that happened to me. I exist on medication to keep myself going thru the day & sleep is an ongoing battle at night. People ask me what is Fibromyalgia, I still dont really know how to answer that one question. I wish I did. I try ignoring the symptoms as much as I can, to have somewhat as normal life. That never lasts for very long.… Read more »

Debbie

It took me a while to realize my fibromyalgia also began after I had a total hysterectomy.For two years I was a different person emotionally and then the pain and fatigue started and has never stopped.I’m also on meds for pain and fatigue.My friends and family believe that I’m addicted and should go to rehab (my therapist says no). I could say more but I’m sure you know the rest.I’ve never known anyone that has fibromyalgia,it would be nice if I could find a group near me. I hope things are going well with you.If you ever need to ventilate… Read more »

marjean

I was diagnosed w/ fibro about 4 or 5 years ago..I have celiac, gerd, and IBS as well..I know family members who cant get out of bed..I asked my dr why Im not that bad, maybe I don’t have it..she said I do indeed have it, and its because I stay active, pace myself..Now as Im getting older, NOW I feel the pain, tiredness, sleep problems..and the cognitive..

Kaylee

I started out with Fibromyalgia, then celiac, then allergies to all kind of foods and chemicals, IBS. I have seen acupuncture, massage therapist, hands on healing, chiropractors, all kinds of doctors. Meds, more meds, different meds.
On rare days I feel like I could dance again, most days are slow. Often I can’t even get out of bed.

Liz

And some people gets it for life and gets worse, I’ve been diagnosed since I was 17 I’m now 33

Lone

I have had the diagnose for 3 years. I live in Denmark. We are NOT as far in research as other countries. In the start i was told it is a ‘ garbage diagnose ‘ and was told ‘ Many People’s has it and norhing Can be done about it’ Meaning They didnt belive me. Finally West to a pain center were they told me many doctores had that belive but i wasnt crazy. Got some medicine and Can Work 10 hours a week. Many little ‘side ilnesses’ has come since. And Everytime the doctor Said it had nothinh to… Read more »

Sheryl

I wonder why, that this dx is being treated with an RA doctor. Because, the neurological doctors done want to get anywhere near this. It’s not an arthritic condition. Started with mono at 15 now 65! Keep moving

Cindy Curtis

I to was told it was a garbage can diagnosis. I have been to just about every doctor in the USA and in other countries. was on pain med for about 15 years tried suicide twice because of pain I just can’t take it no more. Then to add to the problem I broke my back last year the doctors wanted to put a plate in it but when they found out I have a severe bleeding disorder they said there was no way they would risk putting one in, So they slapped a big ole brace on me and… Read more »

Cindy Curtis

Thank you.

pam richardson

The fatigue and depression the pain all over it is something different everyday.I don’t sleep sometimes for 36 hrs,at least 2 nights a week….Stress makes every thing worse……..

Paige Harper

Hi Pam I totally agree with you.when all’s you do is feel pain and hurting.and when that is most of your days your life it is depressing. I’ve gone as far as not wanting to get out of bed then it went to where I couldn’t take the pain anymore. I was done. Then I looked around and said you can take this pain and more get stronger you can do this. But remember your not doing bad if you open your eyes and can have y9ur feet touch the floor.

Angela Ogbemudia

Thanks that really hit me because i suffer badly and with fibro frog they call it but what hurts me the worst is that i can find a doctor here in canada in grimshaw alberta who understand what my body is going through i suffer i dont know what to do anymore im also having trouble with help getting on aish who would explain my illness . i will keep watch your videos thanks

Melissa

I was diagnosed with fibromyalgia 15 years ago. Nothing really gets rid of the pain, I am a Registered Nurse, Retired at 62 die to the inability to perform my job. I hate the fibro fog! People think I am making up my pain, anxiety, insomnia, I am always sooo tired. Gardening has helped. I eat basically from what I grow. No processed foods.

Michelle Wagener

I was officially diagnosed after my mom died 10 years ago. The pain and tiredness are the hardest parts. I want to do more and have to stop. I know now how much I can handle. I had to spring clean,my house recently and I pushed myself for several days. I couldn’t get out of bed for 2 days. I am lucky to have a great doctor that has done research on fibromyalgia too.

Paige Harper

I have fibromyalgia.i was Diagnosed quite a few years ago after I had a huge horse accident I was told sometimes, Former Accidents to your body will bring it on.I would hurt so bad I would have to leave work or anything I was doing and I would just cry myself to sleep because nothing helps take the pain away it is like having the flu in your muscles. everything hurts your hair on your head hurts and you just can’t get away from the pain nothing helps. Don’t touch me it hurts to walk.one think I disagree with is… Read more »

Karen morris

Thank you so much , this was very helpful , to me and other members off my family and friends .

Mary

I’ve recently changed my eating to keto. A lifestyle change. I’ve removed any inflammatory veg. It’s been 5 months and my IBS is gone, not as many or as long lasting flares. I recommend giving it a try. It’s free it’s just real food meat & green veg plus a few berries

Flo

I have Fibro, Rheumatoid arthritis and Sjogren’s syndrome. I have pain all the time. My life is difficult, I appear like I’m ok but my body is like that of a 80yr old and I’m 38. I feel like a walking time bomb.

Flo

Everyone’s body and healing is different. I am going on 5yrs been diagnosed. I hope an pray that recovery is in my future.
Thanks everyone for sharing!

Joy

I have recently been diagnosed with fibromyalgia, in addition to other autoimmune disease, sjogren syndrome and other issues. My family doctor told me that she believed my pain was psychological. My husband took me to a private doctor who did all blood tests, sent me to a gastroenterologist, and a rheumatologist. They all agreed that in addition to autoimmune disease, I have fibromyalgia and arthralgia. I have never experienced such debilitating pain. Almost everyday since July this year I am in pain and can hardly move. Irritable bowel syndrome, excruciating pain in my joints, muscles, disturbances in my sleep, brain… Read more »

Brionni

My fibro journey started in July when I had a traumatic event happen to my family. It was at the point where I was in so much pain I couldn’t get out of bed. It’s getting better though.

Judy Lagassie

Wow Fibromyalgia symptoms started after I had my ovaries out. No this disease is certainly not for wimps.
Each and every day is a challenge. All the various symptoms is crazy. It’s like it screws with all your body systems in one way or another.
Thankyou for sharing. Gentle Hugs.

Jennifer Gloria

I have been diagnosed in 2005 and has had many different types of pain, however my greatest problem is that I am hyper allergic to medicine certain food stuff especially cucumber and the worst anesthetic and sonar gel. i have learned over the years to use vitamins and slow released magnesium and calcium . On my bad days I just chill as the stress of the flare ups make me stress and now with covid 19 it has not been easy. In South Africa though we are not so up to date with treatment and our food sources are restricted… Read more »

Jeannette McAteer

Has anyone experience difficulty in coordination and mild tremor…I have had Fibromyalgia for some number of years….and everything that goes with it.I have great difficulty climbing my stairs at home…Have to use both my start rails on either side…My legs feel like Waterlogged Tree trunks….Its affecting my confidence outside the house..Can’t walk very far..I can’t cope if I have to stand and wait for something in store. My body creates a tremor like.feeling deep inside my body.The hands don’t Shake…It come on if I have been on my feet too long,and perhaps working around the home..If I rest in bed.it… Read more »

Tonja Jones

Dear Jeannette, I am quite familiar with the internal vibration you are referring to. It is rough! Before I received my fibro diagnosis 7 years ago, I noticed a tremor with my hands esp at work when things got stressful. This continued until I could barely walk across a room, my legs feeling like rubber. Then the internal trembling began and did not stop…along with allodynia making my body feel like it was on fire. These symptoms did not end until Gabapentin brought some relief. When I am overly tired or stressed or we are having big weather changes, I… Read more »

Michelle Bianca Meter

It was nice hearing about fibromyalgia. I have Fibromyalgia. I did hit my head hard on top by the ven & it’s very difficult the body pain, headache & if try not 2 stress & sleep problems now sometimes my sugar level goes down & I jts wane eat sweet stuff.I can’t take it anymore the people don’t wane believe me. I don’t no how two handle fibromyalgia I have it for 2 years. The pills not wrking really & I’m tired off pills. Help

Joy

I have been diagnosed with FM in 2020 and to this date, I am still in pain all day/night long, ALWAYS tired, I am waiting for the flare up to end!! I changed my entire lifestyle, my diet, the way I sleep (which is not happening, because even while sleeping, I am in pain). Constant brain fig. I can’t function anymore. One activity depletes my energy. I am quickly losing hope. The worst part is when family members and friends tell me it’s all in my head. There’s nothing wrong with me.

Rebekah

Mine started after radiation and chemo. I thought it was my ra acting up but it felt different. I have never felt like I returned to normal after my cancer and It makes me feel like I have been deprived of ever feeling healthy again. I cannot sleep like a normal person and have to force myself to get up and leave my bed. I just want to feel I can face every day awake and part of my world.

Denise

I very very seldom have a good day . I take care of my 91 year father . I think a lot of times he feels better than me . Would love to be able to sleep late . Seem to sleep better in the am . My problem is I feel like people just think I’m lazy ! My house is not real clean .My garage is a mess ! But I do what I can to cook for my dad and beds made and things picked up ! No friends because I turn down the offer to go… Read more »

Rita

Oh my Fibro, a pain you can’t see but you sure do feel it. I took a fall in 1994 while carrying a baby and screwed up my neick and back. I don’t wish Fibro on anyone.. It only gets worse. I have always refused to take hard drugs and have taken Ibuprofen. Then about a year ago I was given kidney stones which may have been caused by the Ibuprofen. So for almost a year, I have been without drugs because I have tried everything else and some times twice. The arthritis is a big pain now without the… Read more »

Bev

Just reading comments related to fibro worsening after a hysterectomy – I battled symptoms that worsened during menopause. I am 60 years old now, menopause has finished and my symptoms and flares are more intense than ever. For me stress is a major trigger, and exercise must be limited as my heart rate plays a huge part in encouraging a flare. I practice gentle yoga daily (10 min) and this keeps the stiffness at bay. I can get away with some strength exercises (arms and abs) but must be very careful with that also. I truly believe that the lack… Read more »

Kenneth

Being a male with fybr people never understand. It’s been 10 yes after a 30 ft fall on my neck it’s still here . doctors meds I’ve never help.. severe allergic reactions to any antidepressant, including lyrical . I’m not sure sure some remedies have been my best bet to relieve symptoms, but it never ever goes away. I’ve had a days weeks and months at a time. .

Yvonne Östman

I was diagnosed with fibromyalgia 20 years ago, but I have had it since I had meningitis in 1970. At least that’s as far back as I can remember being in constant pain. That would be 53 years and counting. Since I don´t really remember a time when the pain and all the other crazy stuff wasn´t there, I thought for a large part of my life that everyone had it and that I was just not as good at handling it as them. Gradually I realized that being in pain and having all those other symptoms wasn’t normal, but… Read more »

Kate

What is CFS? POTS ? MCS? I was diagnosed with fibromyalgia in 2002 since then 2 other rheumatologist have given me the same diagnosis. I also have RA.

Teresa

I have had fibromyalgia my whole like. I have all the sore muscle touch points and then some. Fatigue, sores or rash on the back of my neck, IBS , stomach issues, headaches, itching, rashes, cognitive issues, sleep problems, then sometimes just fall asleep mid sentence due to getting so fatigued, range of motion affected. Anxiety especially as a child because no one believed how much I hurt. Finally got diagnosed in the 1990’s It was a huge relief to have a dr. Who listened to me and diagnosed me after many tests. Mine got worse around the time I… Read more »

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