Fibromyalgia is a chronic condition of widespread pain, fatigue and loss of restorative sleep. Other symptoms can include Irritable Bowel Syndrome (IBS), short term memory lapses, confusion, headaches, skin sensations/sensitivity, eye and jaw problems, and loss of balance. Many sufferers have the symptoms for months and even years, before being correctly diagnosed.
Fibromyalgia Syndrome was recognised by the World Health Organisation during a consensus conference in Copenhagen between 17th and 20th August 1992. Guidelines for diagnosis included the presence of chronic, widespread pain for at least 3 months, the exclusion by clinical tests of other chronic conditions (e.g. Rheumatoid Arthritis, Systemic Lupus) and by painful reaction to pressure being applied to 11 out of 18 recognised tender point sites throughout the body (9 on each side).
It is now thought that Fibromyalgia is primarily a problem with an imbalance in the central nervous system, which leads to disordered sensory processing. There also appears to be a problem with blood flow to some parts of the brain and perhaps through muscle capillaries. FMS sufferers do not respond well to sustained activity, particularly repetitive tasks and in most cases regular employment cannot be maintained.
Treatments are aimed at reducing the effects of symptoms and it is often a matter of finding a combination of medications and therapies that suit anyone individual. An improved quality of life depends on the ability to understand the condition and to “manage” it. Exercise, whilst important, must be very gentle, and any build up in an exercise programme has to be very gradual.
FMS is recognised by the various benefits agencies and there have been successful instances of sufferers claiming long-term medical insurance payments and pensions.
Background and History
Fibromyalgia has been around for a long time, even though it has only recently begun to be better understood and more and more people are being diagnosed with the condition.
Fibromyalgia was first thought to be inflamed areas in fibrous tissue or fascia that surrounds muscles and bind them together. The fascia is like a glove covering a hand. The hand is the muscle, and the glove is the fascia.
Subsequently, sophisticated microscopic studies were performed, and they reported that there was no actual inflammation with the muscles or connective tissue. If we were to look at your muscles under a microscope, we would not see evidence of muscle disease; in fact, the muscles themselves function normally, or have normal strength. But your muscles are painful, and this pain has certain characteristics, which make up a specific syndrome, the Fibromyalgia Syndrome.
The cause of Fibromyalgia is unknown, but recent medical research has provided some clues about the factors that may contribute to this syndrome. We use the word ‘syndrome’ instead of disease because, unlike a ruptured disc, which can cause a pinched nerve, or arthritis, which is a disease of the joints, Fibromyalgia is not paralysing or deforming
Because this syndrome can cause symptoms resembling a pinched nerve or arthritis, those with Fibromyalgia often mistake it for a more serious disease. Even though Fibromyalgia is not a destructive disease, it causes painful symptoms that can vary from mildly annoying to severely incapacitating. And though there is no true inflammation, as recent medical research shows, the pain is very real, and definite characteristics can be identified with Fibromyalgia.
American College of Rheumatology develops criteria to make diagnosis
In the past 30 years, there has been a renewed interest in studying this condition. In 1981, Dr.Yunus developed criteria, which were used as a standard to objectively diagnose Fibromyalgia. A virtual explosion of research has occurred in the past decades, mainly in America. In 1989, investigators world-wide convened in Minneapolis, MN for the first international myofascial pain and Fibromyalgia symposium to present research and share knowledge. In 1990 the American College of Rheumatology devised updated Fibromyalgia criteria based on a multi-regional study. These criteria include:
- History of Widespread pain lasting over three months.
- Pain in 11 of 18 distinct tender point sites on palpation or pressure with a finger.
Other muscles and soft tissue areas may be tender in addition to these 18 areas described in the criteria. The criteria attempts to establish strict findings for diagnosing generalised Fibromyalgia in those who have muscle pain. In 1992, the Second International Myofascial Pain and Fibromyalgia Symposium was held in Copenhagen, Denmark attracting over 500 medical professionals throughout the world interested in Fibromyalgia. As a result of this symposium a document called the “Copenhagen Agreement” was formulated. Sufferers have used it to provide documentary evidence when applying for state benefits and to show unsympathetic GP’s that Fibromyalgia does exist and is not “all in the sufferer’s head”.
Fibromyalgia is now recognised as a distinct medical condition with characteristic findings. The Department of Health has produced a two-page document all about FMS; this is something to which all GP’s should have access. In 1995, a third Symposium was held in San Antonio, Texas, and a Fourth Symposium was scheduled in 1998 in Italy.
We are all aware that even at this present time there is still a lot of controversy about Fibromyalgia, why is this? This is because the original theory that an inflammation existed was incorrect; many doctors falsely concluded that Fibromyalgia was not a legitimate condition. These doctors suggested that the symptoms were “all in the head.” In fact, many physicians use the term “psychogenic rheumatism” to describe Fibromyalgia.
Routine laboratory studies and x-rays will all be normal with this condition. No disease is found in the bones or nerves. Because routine tests are normal does not mean that Fibromyalgia does not exist, or that all of the tests will be normal. Sleep studies, electron microscopy studies, muscle oxygenation tests, and other sophisticated studies have been shown to be abnormal in persons with Fibromyalgia. These tests are mostly carried out in America, where their health scheme is very different to our NHS. These special tests are very expensive. Therefore, they are are not considered part of the routine testing for individuals with muscle pain, even though they would be abnormal if the person had Fibromyalgia.
Just because there are no routine lab abnormalities, and the only readily observable indicators of Fibromyalgia are “tender points,” does not mean that there are no problems. Tender points and normal lab results are exactly what we expect to find with Fibromyalgia. To an experienced examiner, tender points are still the “signature” findings of Fibromyalgia.
Fibromyalgia has been termed “the invisible condition,” because the muscles appear normal and no obvious abnormalities are evident when looking at an individual with this syndrome. Fibromyalgia muscles may look good on the outside, but they are definitely hurting on the inside.
Characteristics of Fibromyalgia
Anyone can get Fibromyalgia. Worldwide, up to 2 or more of the population has this condition, so it is very common, and it affects millions and millions of people. Currently it is diagnosed about 9 times more in women than men. Children can also have Fibromyalgia, although the condition usually first causes symptoms between ages20 and 45.
Normally, the symptoms have been present for years even though the diagnosis may not have been made until after ages 50-65. A rheumatologist or “Fibro Friendly G.P” can make an actual diagnosis of Fibromyalgia. Many people have Fibromyalgia who have yet to see a medical professional and be diagnosed.
Fibromyalgia pain is usually described as a chronic, generalised aching, with certain areas that may feel like tingling, or sharp, stabbing sensations. The pain may radiate or travel to different locations. For example, areas of discomfort in the upper back may cause numbness and tenderness in the arm, even though there is no problem per se, in the arm.
A person with Fibromyalgia can often point to the exact area or areas of discomfort and note that a particular area is very tender to touch. The pain may “wander” to different sites. The pain can also flare up suddenly for no apparent reason. The muscles are not the only sore areas. Other soft tissues such as ligaments, tendons, and bursa can be sore.
Since different locations and sites can be painful with Fibromyalgia, it is important to always be certain that the cause of the pain or discomfort is in fact Fibromyalgia and not another medical condition.
For example, a common area of pain in Fibromyalgia is in the sternum or breastplate where the ribs attach. This is called costochondritis. It can mimic heart pain, but there is nothing wrong with the heart. It is always a priority to get the more urgent possible medical problems checked out first, by medical professionals.
Common Fibromyalgia Symptoms
Fibromyalgia presents with many differing symptoms, many severe, some seemingly trivial. The important thing is to be aware of them so that you can describe them more accurately to your doctors allowing them to treat you better.
Above All Be Safe! Do not assume symptoms are from Fibromyalgia unless a physician has properly diagnosed you. The golden rule has got to be if you are experiencing any symptoms, please get them checked out by a medical professional ASAP. If you are not happy with what your GP has to say, you are perfectly within your rights to ask for a second opinion.
- Recurrent flu-like symptoms
- Recurrent sore throats/red infected
- Painful lymph nodes under arms and neck
- Muscle and joint aches with tender and trigger points-up to 18 of them
- Night sweats and fever
- Severe nasal (and other) allergies
- Irritable bowel symptoms (IBS)
- Weight change-usually gain
- Heart palpitations
- Mitral valve prolapse
- Severe PMS
- Yeast infections
- Rashes and itching
- Uncomfortable or frequent urination
- Interstitial bladder –cystitis
- Chest pains- non cardiac –costochondritis
- Temporomandibular joint dysfunction (TMD or TMJ)
- Hair loss
- Carpal Tunnel Syndrome
- Cold hand and feet
- Dry eyes and mouth
- Severe and debilitating fatigue
- Widespread pain
- Other chronic illnesses usually present (like diabetes, hypoglycaemia, asthma, lupus, ME etc).
- Numbness in limbs
- Painful swelling in the hands, legs, feet and neck
- G.E.R.Ds (gastro-oesophageal reflux disorder)
- Growing pains that started in childhood, and often continued into teens or adulthood
- Widespread pain during/after physical exertion
Cognitive Function Problems
- Attention deficit disorder
- Spatial disorientation
- Calculation difficulties
- Memory disturbance
- Communication difficulties (problems speaking, confusing words)
- Anxiety and panic attacks
- Personality changes
- Emotional lability (mood swings)
Other Nervous System Problems
- Sleep disturbances (stage 4 sleep deprivation) sleep paralysis
- Changes in visual acuity
- Numb, tingling, or burning sensations
- Light headedness or dizzy spells
- Feeling ‘spaced out’
- Frequent unusual nightmares and disturbing dreams
- Tinnitus (ringing in the ears)
- Difficulty moving tongue to speak
- Severe muscle weakness
- Susceptibility to muscle, tendon or ligament injury
- Intolerance to bright lights
- Intolerance to alcohol
- Intolerance to sound
- Intolerance to smell
- Alteration of taste smell and hearing
- Morning stiffness in muscles and joints
- Restless leg Syndrome
- Muscle spasms, twitching and jerking
- Muscle tremor and shivering during/after activity or exercise
Please remember – Self-Diagnosis is No Diagnosis. Always consult your doctor. That way you can be sure of a proper diagnosis and proper treatment. Whilst we are here to help you make sense of what you are experiencing, The Wight Fibro Group are not doctors. The information above is there to help you identify and clarify, so that you can get the best from your doctors when you see them.