Fibromyalgia is a long-term (chronic) condition that can cause widespread pain and tenderness over much of the body. It’s quite common, up to 1 person in every 25 may be affected.
It is thought to be more common than statistics report, since many people do not seek medical help, or are misdiagnosed. There may be around 1.5 to 2 million people in the UK with Fibromyalgia. For more information on the condition visit the Fibromyalgia Action UK website. 5th February 2019 https://www.nrshealthcare.co.uk/articles/condition/firomyalgia
How Do the Numbers Differ Between Men and Women?
Fibromyalgia syndrome is more common in woman than in men – according to the National Fibromyalgia Association, 75-90% of people with fibromyalgia syndrome are women.
How Do the Numbers Differ with Age?
Symptoms of fibromyalgia syndrome usually start somewhere between 20 and 55 years old. As the disease is lifelong, by the age of 80, about 8% of people can be classified as having fibromyalgia syndrome, according to the National Fibromyalgia Association.
In the past, other terms were used to describe the condition, including muscular rheumatism and fibrositis. The condition may even have been misdiagnosed as degenerative joint disease.
We now know that fibromyalgia isn’t linked to inflammatory or degenerative arthritis, even though the symptoms may sometimes be very similar.
Fibromyalgia doesn’t cause any lasting damage to the body’s tissues. However, it’s important to keep as active as you can in order to avoid weakening of the muscles (deconditioning) which could to secondary problems.
What is Fibromyalgia?
Fibromyalgia is also called fibromyalgia syndrome. A syndrome is a group of symptoms that happen together. People with fibromyalgia experience aches and pain all over the body, fatigue (extreme tiredness that does not get better with sleep or rest), and problems sleeping.
Fibromyalgia may be caused by a problem in the brain with nerves and pain signals. In other words, in people with fibromyalgia, the brain misunderstands everyday pain and other sensory experiences, making the person more sensitive to pressure, temperature (hot or cold), bright lights, and noise compared to people who do not have fibromyalgia.
Fibromyalgia has been compared to arthritis. Like arthritis, fibromyalgia causes pain and fatigue. But, unlike arthritis, fibromyalgia does not cause redness and swelling, or damage to your joints.
The Main Symptoms of Fibromyalgia are:
- Widespread Pain
- Extreme Tiredness (Fatigue)
- Sleep Disturbance
The effects of these symptoms vary from person to person and from day to day. Many people have flare-ups from time to time when their symptoms become suddenly worse.
People with fibromyalgia often say that fatigue is the worst part of the condition and that they can’t seem to think clearly or remember things properly (this is sometimes called “fibrofog” or “brainfog”).
The pain may feel as though it affects your whole body, or it may be particularly bad in just a few areas. Some people find that their pain feels worse in very hot, cold or damp weather.
Less Common Symptoms of Fibromyalgia are:
- Poor Circulation: Tingling, Numbness or Swelling in the Hands and Feet.
- Irritable or Feeling Miserable
- Feeling an Urgent Need to Urinate, Especially at Night
- Irritable or Uncomfortable Bowels (Diarrhea or Constipation and Abdominal Pain) Sometimes Separately Diagnosed as Irritable Bowel Syndrome (IBS)
Nobody knows for sure yet what causes fibromyalgia. Current theories suggest that fibromyalgia may be caused by irregular activity within the central nervous system. This is because the pain it causes does not seem to be a result of physical or mechanical problem in the body (e.g. a broken bone, a pulled muscle, inflammation) but instead, seems to be caused by the brain’s management of pain signals. This means that for many people, pain relieving drugs do not have much effect for them and the pain cannot be healed.
People with the condition may find it difficult to accept that the causes of fibromyalgia are not yet confirmed. Generally, people like to understand why they are experiencing a healthcare condition. Some people report that the fibromyalgia diagnosis process is also difficult and takes a long time, because there is a lack of understanding of the syndrome in the medical community for example, GP’s.
It is common for a stressful life event to be what triggers fibromyalgia. Lots of people who have the condition report that their fibromyalgia symptoms began when they had an illness, injury, operation, bereavement, relationship breakdown (e.g. divorce), or even after having a baby. Similarly, people report that their fibromyalgia symptoms flare up due to these types of events and experiences.
When speaking of symptoms of fibromyalgia, it is important not to generalize because whilst a few symptoms are common amongst people with the condition, everyone will experience it differently. Here, we cover key symptoms that many people with the condition will experience, and a host of other symptoms that some people report. Fibromyalgia can lead to other health conditions developing, and we discuss these here also. Not every person will experience all these symptoms.
Generally, fibromyalgia symptoms will affect a person’s life to some degree, and this will be different for each person with the condition. Some people will find they can still go about their daily life but may have times when fibromyalgia flares up. Others will have constant symptoms that are difficult to manage.
Symptoms of Fibromyalgia Include:
- Pain all around the body, which may feel like burning, stabbing or shooting pain
- Sensitivity to pain (feeling that even slight touch is painful)
- Fatigue (exhaustion, excessive/unexplained tiredness)
- Cognitive difficulties e.g. feeling like thought processes are slow, or having memory problems
- Sleep issues i.e. non-restorative sleep (being unable to progress into a state of deep sleep)
- Stiff joints and muscles
- Balance problems i.e. vertigo, dizziness
- Food Intolerances
- Sensitivity to heat/cold
- Mood swings, anxiety, depression or other mental health problems
- Digestive problems e.g. Irritable Bowel Syndrome
- Headaches or migraines
People report that their symptoms change over time and fluctuate during different periods. Some symptoms may come and go or come on for a period and then get better before another symptom occurs. It is important to learn what triggers fibromyalgia symptoms for you.
If you are concerned about any of the symptoms you read here, consult your GP. These symptoms are often symptoms of other conditions and may not be caused by fibromyalgia.
Some people find that when they present fibromyalgia symptoms to their GP, it takes some time to be diagnosed. Many people are misdiagnosed, because fibromyalgia is not well understood, being only labelled in the 1990’s.
Even if a GP suspects the cause may be fibromyalgia, there is no test for the condition. Blood tests, scans and so on cannot prove the condition is present. Your GP may carry out or refer you for testing though, to rule out other conditions first, for example, they may want to ensure you do not have arthritis, multiple sclerosis or chronic fatigue syndrome.
If your GP is unable to find any other reasons that could be the cause of your symptoms, they may decide upon a fibromyalgia diagnosis.
Receiving a diagnosis of fibromyalgia can be difficult to take in. It can help to talk to other people in a similar situation, or those who are living with the condition. As a group this is one of our main aim’s to be there for people, so they can talk to someone in a similar position where they can give them help and support, we are always there to help. To find out first-hand what you may have to deal with. Read our Support for Fibromyalgia page for details about online communities that may help
Factors That Aggravate Fibromyalgia
Fibromyalgia sufferers are often sensitive to odours, loud noises, bright lights, some foods and prescribed medications. You may also experience
Chest pain unrelated to the heart
Shortness of breath
Irritable bladder/interstitial cystitis
Vulvodynia (vulvar pain)
Difficulty focusing eyes
The feeling of swollen extremities
Dry/burning eyes and mouth
Other situations which make Fibromyalgia worse.
Weather (especially cold climates and change in barometric weather), cold or draughty environments, hormonal fluctuations (premenstrual and post menstrual states), poor quality sleep, stress, depression, anxiety and over exertion can all contribute to fibromyalgia flare ups.
If you suffer from structural misalignment or joint problems such as arthritis a lot of strain is placed on surrounding muscles, tendons and ligaments. Over worked muscles can rebel by developing tiny little knots or nodules that limit muscle elasticity. These tiny knots or nodules are called myofascial trigger points.
I recently came across this interesting article By Adrienne Dellwo on The History of Fibromyalgia.
And for those who thought this was a new disease read this and you will be surprised.
The History of Fibromyalgia
By Adrienne Dellwo
Updated June 30th, 2019
You sometimes hear fibromyalgia referred to as a “fad diagnosis” or “new disease,” but the truth is that fibromyalgia is far from new. It has centuries of history, with multiple name changes and discarded theories along the way.
While it hasn’t always been accepted by the medical community, and its acceptance isn’t universal, fibromyalgia has come a long way and current research continues to offer proof that it’s a very real physiological illness.
The most-often cited historical account of fibromyalgia comes from a 2004 paper by researchers Fatma Inanici and Muhammad B. Yunus. This history was compiled from their work as well as new information from the past decade.
Back to the Beginning (1592-1900)
Early on, doctors didn’t have separate definitions for all the pain conditions we recognize today. Descriptions and terminology started out broad and gradually were narrowed down.
In 1592, French physician Guillaume de Baillou introduced the term “rheumatism” to describe musculoskeletal pain that didn’t originate from injury. This was a broad term that would have included fibromyalgia as well as arthritis and many other illnesses. Eventually, doctors began to use “muscular rheumatism” for painful conditions that, like fibromyalgia, didn’t cause deformity.
Two-hundred years later, definitions still were rather vague. However, in 1815, Scottish surgeon William Balfour noted nodules on connective tissues and theorized that inflammation could be behind both the nodules and pain. He was also the first to describe tender points (which would later be used to diagnose fibromyalgia).
A few decades later, French doctor, Francios Valleix, used the term “neuralgia” to describe what he believed was referred pain from tender points traveling along the nerves. Other theories of the day included hyperactive nerve endings or problems with the muscles themselves.
In 1880, American neurologist George William Beard coined the terms neurasthenia and myelasthenia to describe widespread pain along with fatigue and psychological disturbance. He believed the condition was caused by stress.
The creation of more specific terminology really exploded in the early 20th century. Different names for fibromyalgia-like illness included:
- Muscle hardening
Fibrositis, coined in 1904 by British neurologist Sir William Gowers, is the one that stuck. The symptoms Gowers mentioned will look familiar to those with fibromyalgia:
- Spontaneous pain
- Sensitivity to pressure
- Sleep disturbances
- Sensitivity to cold
- Aggravation of symptoms by muscle over-use
As a treatment, he suggested cocaine injections, as cocaine was then used medicinally as a topical anesthetic.
Medically, “fibro” means connective tissue and “itis” means inflammation. Soon after Gowers put forth the name, another researcher published a study seeming to confirm many of Gowers theories about the mechanisms of inflammation in the condition. This helped cement the term fibrositis in the vernacular. Ironically, this other research was later found to be faulty.
In the 1930s, interest heightened in muscle pain referred from tender/trigger points and charts of these patterns began to appear. Local injections of anesthetic continued to be a suggested treatment.
Fibrositis wasn’t a rare diagnosis back then. A 1936 paper stated that the fibrositis was the most common form of severe chronic rheumatism. It also said that, in Britain, it accounted for 60% of insurance cases for rheumatic disease.
Also, in that era, the concept of referred muscle pain was proven via research. A study on pain pathways mentioned deep pain and hyperalgesia (a heightened pain response) and may have been the first to suggest that the central nervous system was involved in the condition.
Additionally, a paper on trigger points and referred pain put forth term “myofascial pain syndromes” for localized pain. Researchers suggested that the widespread pain of fibrositis may come from one person having multiple cases of myofascial pain syndrome.
World War II brought a renewed focus when doctors realized that soldiers were especially likely to have fibrositis. Because they didn’t show signs of inflammation or physical degeneration, and symptoms appeared linked to stress and depression, researchers labeled it “psychogenic rheumatism”. A 1937 study suggested that fibrositis was a “chronic psychoneurotic state”. Thus, the on-going debate between physical and psychological was born.
Fibrositis continued to gain acceptance, even though doctors couldn’t agree on exactly what it was. In 1949, a chapter on the condition appeared in a well-regarded rheumatology textbook called Arthritis and Allied Conditions. It read, “There can no longer be any doubt concerning the existence of such a condition”. It mentioned several possible causes, including:
- Traumatic or occupational
- Weather factors
- Psychological disturbance
Still, descriptions were vague mishmashes that we now recognize as including several very different types of pain conditions. They generally involved fatigue, headaches, and psychological distress, but poor sleep wasn’t mentioned.
The first description of fibrositis that truly resembles what we recognize today as fibromyalgia came in 1968. Researcher Eugene F Traut’s paper mentioned:
- Female predominance
- Generalized aching and stiffness
- Poor sleep
- Being “worry worts”
- Tender points discovered by physical exam
- An important mind-body connection
Along with generalized pain, he recognized certain regional ones that appeared to be common, including what we now know as carpal tunnel syndrome. He mentioned “various levels of the spinal axis,” which you may recognize from modern diagnostic criteria: pain in the axial skeleton (bones of the head, throat, chest and spine) and in all four quadrants of the body.
Four years later, though, researcher Hugh A Smythe penned a textbook chapter on fibrositis that had a far-reaching influence on future studies and led to his being called the “grandfather of modern fibromyalgia”. He’s believed to be the first to describe it exclusively as a widespread condition, thus distinguishing it from myfascial pain syndrome.
Smythe not only included poor sleep in the description but described what sleep was like for patients and also provided unpublished electroencephalogram (sleep study) findings that showed dysfunction in stage-3 and stage-4 sleep. Further, he stated that non-restorative sleep, trauma, and emotional distress all could lead to heightened symptoms.
Subsequent research confirmed sleep abnormalities as well as showing that sleep deprivation can lead to fibromyalgia-like symptoms in healthy people.
Smythe then was involved in a study that defined tender points and suggested their use in diagnosis. It also listed chronic pain, disturbed sleep, morning stiffness, and fatigue as symptoms that could help diagnose the condition.
While researchers had made some good progress, they still hadn’t uncovered evidence of inflammation, the “itis” in fibrositis. The name then changed to fibromyalgia: “fibro” meaning connective tissues, “my” meaning muscle, and “algia” meaning pain.
Still, a lot of questions remained. The primary symptoms were vague and common in the population. Doctors still didn’t have a handle on what fibromyalgia was.
Then, a seminal study lead by Muhammed Yunus came out in 1981. It confirmed that pain, fatigue, and poor sleep were significantly more common in people with fibromyalgia than in healthy control subjects; that the number of tender points was significantly greater; and that multiple other symptoms were significantly more common as well. These additional symptoms included:
- Subjective swelling
- Paresthesia (abnormal nerve sensations)
- Overlapping conditions such as irritable bowel syndrome (IBS), tension headaches, and migraines.
This paper established enough of a consistent symptom cluster to officially denote fibromyalgia a syndrome as well as the first criteria proven to differentiate those with fibromyalgia from others.
A wealth of research has since confirmed that these symptoms and overlapping conditions are in fact associated with fibromyalgia.
Yunus then led research cementing the idea of several overlapping conditions, including primary dysmenorrhea (painful period) along with IBS, tension headache, and migraine. He then believed the unifying feature was muscle spasms, but that suggestion would later give way to the theory of central sensitization.
Since this point, we’ve had a tremendous amount of research published and progress made. We still don’t have all the answers, but we’ve gained a much better understanding of what may be going on in our bodies.
Important advances include:
- 1984: First study published linking higher fibromyalgia prevalence in those with rheumatoid arthritis.
- 1985: First controlled study of juvenile fibromyalgia was published.
- 1986: Drugs influencing serotonin and norepinephrine were first shown to be effective.
- 1990: American College of Rheumatology establishes official diagnostic criteria of widespread pain and tenderness in at least 11 of 18 specific tender points, thus standardizing research inclusion criteria around the world.
- 1991: Fibromyalgia Impact Questionnaire developed for doctors to evaluate the function.
- 1992: Discovery of low growth-hormone levels.
- 1993: studies demonstrate central sensitization and HPA axis (stress regulation) abnormalities.
- 1994: Confirmation of elevated substance P (pain messenger) in cerebrospinal fluid.
- 1995: First U.S. prevalence study shows fibromyalgia in 2% of the population.
- 1995: First SPECT (brain imaging) showing abnormal blood-flow patterns in the brain.
- 1999: First study demonstrating a genetic component to explain why it runs in families.
- 2000: Review of evidence coins the term central sensitization syndromes.
- 2005: American Pain Society releases first guidelines for treating fibromyalgia pain.
- 2007: Lyrica (pregabalin) becomes first FDA-approved treatment in the U.S. (Cymbalta (duloxetine) and Savella (milnacipran) followed, in 2008 and 2009, respectively.
- 2010: American College of Rheumatology releases alternate diagnostic criteria using questionnaires instead of tender points.
Research has continued to shore up these findings as well as suggest new possible causal factors and mechanisms. Some ongoing lines of inquiry include:
- Inflammation of the Fascia: some research has suggested that the widespread pain of fibromyalgia may indeed be inflammatory, but I the extremely thin body-wide web of connective tissue called fascia.
- Extra Nerves on Blood Vessels: a much-publicized study shows extra temperature and pain-sensing nerves in the circulatory system.
- Small-fiber neuropathy: emerging research is showing that certain specialized nerves may be damaged.
- Immune System Abnormalities: some lines of research are showing abnormal activity in the immune system that may suggest chronic immune-system activation or autoimmunity, or a possible autoimmune reaction to serotonin.
Several researchers also are working to establish subgroups of fibromyalgia, believing that it’s the key to nailing down the underlying mechanisms and best treatments. More treatments are always under investigation, and a major goal has long been identifying and establishing objective diagnostic tools such as a blood test or scan.
While fibromyalgia still has not found universal acceptance in the medical community, it’s closer than ever. As research continues to demonstrate that it’s both real and physiological, this condition gains credibility. That helps those of us with it gain understanding, respect, and most importantly, better treatment options so that we can reclaim our futures.
- Albrecht PJ, et al. Plain medicine. 2013 Jun;14(6):895-915. Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of fibromyalgia patients: implications for Widespread Deep Tissue Pain and fatigue.
- Behm FG, et al. BMC Clinical Pathology. 2012 Dec 17; 12:25. Unique Immunologic Patterns in Fibromyalgia.
- Caro XJ, Winter ER, Dumas AJ. Rheumatology. 2008 Feb;47(2):208-11. A Subset of Fibromyalgia Patients Have Findings Suggestive of Chronic Inflammatory Demyelinating Polyneuropathy and Appear to Respond to IVIg.
- Caro XJ, Winter ER. Arthritis & Rheumatology. 2014 Apr 9. (Epub ahead of print) Evidence of Abnormal Epidermal Nerve Fiber Density in Fibromyalgia: Clinical and Immunologic Implications.
- Inanici F, Yunus MB. Current Pain and Headache Reports. 2004 Oct;8(5):369-78. History of Fibromyalgia: Past to Present.
- Oaklander AL, et al. Pain 2013 Nov;154(11):2310-6. Objective Evidence That Small-fiber Polyneuropathy Underlies Some Illnesses Currently Labeled as Fibromyalgia.
- Smith HS, Harris R, Clauw D. Pain physician. 2011 Mar-Apr;14(2): E217-45. Fibromyalgia: An Afferent processing Disorder Leading to a Complex Pain Generalized Syndrome.
- Uceyler N, et al. Brain: A Journal of Neurology. 2013 Jun;136(Pt 6):1857-67. Small Fibre Pathology in Patients with Fibromyalgia Syndrome.
All the content within these pages has been sourced through a variety of online medical and alternative therapy information sources, and at the time of publishing we believe them to be true statements.