Fibromyaliga: Say What?
FMS Tender Point Locations
Fibromyalgia (FM) is a syndrome with widespread chronic pain and multiple tender points, fatigue, sleep dysfunction, cognitive dysfunction and abnormal pain processing. The syndrome can vary in severity from person to person as can the severity of different aspects of the condition. One person may have more intense cognitive dysfunction and fatigue, while another more intense pain symptoms. There are other symptoms that occur with the syndrome but are not necessary for diagnosis. Another complication a person can face are comorbid conditions that frequently occur with FM people.
There Definitely Is The Pain
Fibromyalgia means "fibro" fibrous tissue (tendons and ligaments), "my" meaning muscles, and "algia" meaning pain. The main characteristic people focus on when referring to Fibromyalgia is the pain and they refer to it as a chronic pain condition. Most often mentioned is the widespread muscular pain. Pain that moves around and varies in intensity. At one time the diagnostic criteria for FM included having 11 of the 18 tender points when pressed with a certain amount of pressure but this criteria has since been removed. Partially because it was not often being done by physicians and partially because it became clear FM patients are tender everywhere and finally there is the fact that some patients fit all criteria but may not exactly fit that one. As it stands it must be widespread pain that has lasted more than three months. It is a pain that may be described as flu-like, all over body aches, muscle stiffness and even a burning nerve pain. Pain that is often worse in the morning with muscle stiffness and can improve with movement through the day but does not go away. It can come with muscle weakness and twitches.
It is chronic and daily so to some extent there is a constant baseline pain but the pain will vary. ’Achy’ may describe the overall feeling but it can also be quite severe in intensity. While it is wide-spread various areas can be significantly worse for certain a duration and specifically located in different areas. For example for a week or so your lower back, may severely hurt and the next week it moves to your wrists.
With FM we are looking at pain that:
A) Pain is felt faster: Sufferers have a lower pain threshold causing them to react faster to pain stimulus. (hyperalgesia)
B) Pain is more intense: Pain is felt more intensely and in fact some tactile stimulus that would normally be completely fine against the skin can be painful. Such than it feels like the skin itself hurts and any contact to it is abrasive (allodynia)
C) Pain endures: From the same stimulus someone with FMS will suffer pain longer. Even moderate exercise can cause pain to linger for days causing the sufferer to become discouraged from exercising at all.
The pain of FM is not within the muscle structures itself and the best account of this pain is that it is pain dysfunction within the brain itself. A pain signal that is amplified over what it should be and does not stop when it ought to. Research has indicated that people with FM have as much as three times the levels of a brain chemical called Substance P which is responsible for sending the pain messages to the body. Due to sleep dysfunction cortisol has shown to be low during the day and higher at night leading to daytime fatigue and evening insomnia. Low levels of growth hormone due to lack of quality sleep could be responsible for some of the muscle pain felt.
Is FM pain all simply neurological pain dysfunction?
- Study suggests fibromyalgia pain is caused by small fiber neuropathy - Calgary Fibromyalgia & Ch
An intriguing study done in the University of Würzburg and published in Brain march 9, 2013 indicates fibromyalgia pain is due to small fiber neuropathy. There
- New study indicates a cause for fibromyalgia pain to be found in the skin - Calgary Fibromyalgia &am
There is another recent study to indicate fibromyalgia pain is within the body and not solely pain dysfunction within the brain. The first study of this nature
Other associated symptoms
Essentially the common features of FM aside from pain are: sleep disorders and insomnia, fatigue and cognitive dysfunction(concentration problems, memory problems). See the list below of a general list of common FM symptoms.
Fatigue- This is a very common feature of FM and according to the Canadian Fibromyalgia Guidelines is " present in over 90% of FM patients, is the most common associated complaint . Fatigue may even be more disabling than pain for some, and contributes to subjective report of functional impairment."
Sleep dysfunction- Most common is nonrestorative sleep however people with FM can have other sleep disorders such as delayed onset insomnia, sleep apoea and restless leg syndrome (RLS). Poor sleep affects fatigue and pain, however, when this issue is specifically treated these issues can be reduced. There are medications that can be used for this that are off-label such as low doses of medications in the anti-depressant class, for example a tricyclic antidepressant called Elavil. Other times sleeping pills in the hypnotic classes are used such as Ambien or Imovane are used.
Cognitive dysfunction- often people with FM will refer to fibro-fog or poor concentration and issues with using the wrong word, or unable to remember a word when needed. To some degree pain itself is to blame for some of the cognitive issues as a certain level of pain distracts the mind from being able to take in all of the environment and remember everything. According to the Canadian Fibromyagia Guidelines cognitive dysfunction "includes poor working memory, spatial memory alterations, free recall, and verbal fluency associates with pain in FM as well as other pain patients and is different from healthy controls"
Comorbid Conditions: conditions like IBS that frequently occur with FMS but are not causally linked to FMS are called comorbid, that is there is a statistically link between the two but not any causality. These are not symptoms in-themselves but other conditions that can co-occur with FMS outside not the syndrome itself.
In addition to these main symptoms other conditions may occur with FM such as irritable bowel syndrome, interstitial cystitis, arthritis, chronic fatigue syndrome,Temporomandibular joint disorder (TMJD) and Myofascial pain syndrome, mood disorders such as depression and anxiety. Other comorbid conditions often to see with FM are hypermobility, Raynaud's syndrome, migraines and hypothyroidism.
- Sleep starts: falling sensations causing someone to jerk awake
- Unrefreshing sleep, with light sleep often disrupted.
- Twitchy muscles at night
- Restless leg: an irresistible excited feeling to move or shake the leg often when trying to fall asleep.
- Sleep apnea
- delayed onset insomnia
- Pelvic pain
- Urinary frequency
- IBS- this can be either IBS with only constipation, IBS with only diarreha or IBS that fluctuates between the two extremes.
- Poor balance and poor coordination
- Difficulty distinguishing some shades of colours
- Short-term and long-term memory impairment
- Trouble concentrating
- Inability to recognize familiar surroundings
- Language: Problems speaking known words. Or other associated language difficulties, forgetting the name of known objects, losing words. Forgetting names or train of thought.
- Paresthesia: commonly referred to as ‘pins and needles’ sensation felt in the hands, feet or legs.
- Numbness in extremities.
- Chronic headaches or tension headaches
- Sensitivity to odours
- Sensitivity in weather such as changes in pressure, temperature or humidity
- Sensory overload
- Sensitivity to light and sound
- Tinnitus: Ringing in the ears.
- Visual problems: poor night vision, light sensitivity, blurred vision and frequent changes to prescriptions.
- Multiple Chemical Sensitivity Syndrome: a hypersensitivity to certain chemicals and smells. It can extra sensitivity to lights, temperature and loud sounds.
- Trouble with body temperature regulation: Feeling too hot or too cold.
- Mood swings
- Panic attacks
Skin problems: dry skin, itchy skin, tender skin (allodynia), rashes, Raynaud's syndrome
Costochondritis: Inflammation in the chest rib-cage which causes chest wall pain.
Dysmenorrhea: painful menstrual cramps in women.
What do you think is the cause of your fibromyalgia?
What is the Cause Exactly or Are You Making This Up?
There is no known cause of FM at this time that can be clearly pointed to. There is no laboratory test to prove you have FM which makes diagnosis difficult, however, that by no means indicates FM is not a real condition as there are physiological effects of the condition.
There have been several theories as to the cause of FM. One is that at its root FM is an automatic nervous system dysfunction and problems with various hormones and neurotransmitters can interrupt certain bodily processes and lead to many FM symptoms. Another theory that has been around for quite some time is that FM is due to the fact that with FM sufferers not only have sleep problems they do not get enough deep sleep, which lowers the amount of growth hormone produced and prevents muscles and nerves from being repaired. Since FM can run in families and tends to affect more woman there is indications it might have a genetic component. Since some people get FM after an injury it could be the result of an injury to the central nervous system. Also since some people get FM after getting ill it could be FM is from a virus causing a trauma to the nervous system. Or FM could in fact be auto-immune in nature.
The Canadian Fibromyalgia Guidelines has this to say about causal factors: "Abnormalities in pain processing have been identified at various levels in the peripheral, central, and sympathetic nervous systems, as well as the hypothalamo-pituitary-adrenal (HPA) axis stress-response system. Documented abnormalities include evidence of peripheral sensitization and wind-up phenomenon, central sensitization with changes in functional MRI and SPECT scans of the brain, increased levels of substance P in the cerebrospinal fluid, and impairment of descending noxious inhibitory control (DNIC) [111-118].Familial studies point to some genetic predisposition with up to 26% of relatives of patients with FM reporting chronic widespread pain (CWP), and FM diagnosed in 28% of offspring of FM women [119, 120]. Genetic factors may predispose some individuals to a dysfunctional stress response via the HPA axis . While no individual gene has been associated with FM, there is increasing evidence of a polygenic effect, with polymorphism of genes affecting serotoninergic, catecholaminergic and dopaminergic systems playing a role [122, 123].Psychosocial distress has been shown to predict onset of chronic widespread pain in population studies conducted in England [124, 125]. Early life adversity is linked to chronic widespread pain in adult life . Abuse, which may have been sexual, physical or psychological, particularly in childhood has been reported with greater frequency in FM patients than controls [127-129]. These numerous interacting factors may be the setting in which a stressful event, which could be physical such as a viral illness, traumatic, or psychological, can lead to a vulnerable health status and may be a trigger for FM as reported for nearly a quarter to a third of persons with FM ."
Treatments rated by people with fibromyalgia
Medications: Medications known specifically to be used for FMS are antidepressants such as Cymbalta and Savella or anticonvulsants such as Lyrica and Gabapentin. Other medications may be added such as sleeping pills due to the vital nature of sleep in an FM patient. There are however numerous off-label medications used.
CureTogether is a site where people can rate treatements they have taken and at 1,144 votes they stated "We were surprised to find that patients rate Lyrica, Cymbalta, and Savella as making their Fibromyalgia worse, not better (see the red part of the chart above.)The treatments that help most, in the top right corner of the chart, are simple lifestyle changes: rest, heat, sleep, stress reduction."
However lack of specific FM treatment guidelines can lead to a great deal of off label medications prescribed in addition to more than one medication for most patients. According to a study done Pain Medicine October 2012 182 “unique types of medications prescribed for FM, including duloxetine (26.8%), nonsteroidal anti-inflammatory drugs (26.6%), pregabalin (24.5%), opioids (24.2%), tramadol (15.3%), benzodiazepines (15.2%), cyclobenzaprine (12.9%), milnacipran (8.9%), and others.” Pain-topics states “Polypharmacy was prevalent: only 22% of patients were taking only one medication, most (78%) took an average of 2 to 4 (mean 2.58; 95% CI, 1 to 5) different medications concurrently. The type of current medications used was most strongly associated with patient medication history and medical specialty of the prescriber, with specialists tending to more often prescribe newly approved drugs.”
The Calagary Harald states that in regards to the Canadian Guidelines “a combination of treatment options such as exercise, cognitive-behavioural therapy, education, self-management and relaxation techniques as well as medications that target a patient’s most bothersome symptoms: pain being the most serious. The goal of treatment is to improve symptoms and “optimize function,” according to the guidelines. There is no one ideal treatment, although the guidelines say management should be tailored to each patient’s symptoms.”The aim is for medication in addition to complementary treatments which can help ease which symptoms whether the complementary treatments are massage therapy, chiropractor, acupuncture or yoga. Exercise is important, but exercise is not a full work out of weightlifting or aerobics. It is low to moderate exercise based on stretches, taking walks and moving up to things like yoga and water aerobics. It is important to start slow and work your way up to a routine that works for you. Exercise also helps with fatigue and mood regulation. Initially there will be an increase to baseline pain when engaging in exercise and it can take up to three months of regular exercise to get into a good habit and see that baseline pain return to a normal level. The Canadian Fibromyalgia Guidelines has these recommendations in regards to complementary treatments: "Acupuncture has been evaluated by at least two meta-analyses and three systematic reviews without showing evidence for prolonged effect on symptoms of FM, other than immediate pain reduction following treatment [194, 197-200]. However, when combined with other treatments including exercise and tricyclic antidepressants (TCAs), there was improvement in all measures of pain . Similar to Tai Chi, Qigong with origins in Eastern medicine, but with differences in breathing patterns and meditation, has been shown to have some effect for up to four months when studied in 57 FM patients . Chiropractic treatment, specifically manipulation, has also not been shown to have any appreciable effect on symptoms of FM, but may be useful for patients presenting with associated mechanical low-back pain [203, 204]. Hydrotherapy, which includes spa-, balneo-, and thalassotherapy has been evaluated in at least one meta-analysis and three systematic reviews and has shown short term benefits for pain and health related quality of life (HRQOL), although studies are mostly of low quality [180, 183-185]. Interestingly, most hydrotherapy programs also include an exercise component which may have important positive effects ."
There are also various herbs and supplements that can be taken that may help with symptoms. The ones most often recommended for FM in particular is Magnesium due to the fact some studies show we are low in it and perhaps do not process it quite so well. Stress B vitamins are also a good idea. Herbs such as ginkgo and bilberry together can help with memory and thinking processes whereas boswellia and safflower extract can help with pain. Valerian, chamomile and passionflower combined work quite complementary to help with sleep. However it is vital whichever way you choose with supplements and herbs to keep your doctor informed as to prevent interactions.
Topical creams can also be used. Most common are menthol creams. However, capsaicin creams which block substance P in the area have been shown in studies to help.
lgia & Pain Management : Fibromyalgia Signs and Fibromyalgia Symptoms
- Avoiding MSG in food, avoiding sugar substitutes like aspartame.
- Maintain good sleep habits and do not drink caffeine after 8 pm.
- Maintain a solid routine in your sleep habits where you always go to bed and wake up at the same time, which also means it is best to avoid working a job with shift work.
- If possible eat small meats every 2 to 3 hours rather than large meals which makes it easier to digest, keeps your fibro-fog to a minimum and helps avoid some nausea.
- Change positions often, especially if you work at a job where you are stationary. Get up and walk around, change positions and go for a walk on breaks.
- Keep a pain journal of your pain levels, medications, triggers and symptoms.
- Join a Fibromyalgia chronic pain group near your location or online, or see a therapist.
- If accommodations at your workplace are impossible and you are unable to manage to consistently make it to work or meet work standards consider alternative work choices like a position with the company that allows work from home, partially or fully, or that is impossible consider other employment options like telecommuting.
- Invisible Disabilities Association - IDA — Encourage | Educate | Connect | Invisible No More
Encourage | Educate | Connect | Invisible No More
- Canadian Pain Coalition: Home Page
The Canadian Pain Coalition is a Partnership of patient pain groups, health professionals who care for people in pain, and scientists studying better ways of treating pain.
ME/FM Action Network is a Canadian, registered, non-profit organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advoc
- National Fibromyalgia Association: Welcome to the national fibromyalgia association
- Canadian Guidelines for the Diagnosis and Management of Fibromyalgia | Canadian Guidelines
Facebook Pages for FM
- Voices of Fibromyalgia
- Surviving Chronic Pain
Broader in scope, but they do host various chats one of which is a weekly FM chat. Also have a chronic pain chat, anxiety chat and migraine chat..
- Fed up with fibromyalgia
- Canadian Fibromyalgia Community
- Making Invisible Disabilities Visible
This is my own FM page, linked to my health blog and I also discuss coping with chronic pain and chronic migraines.