FIBROMYALGIA - a patient's guide
What is it?
Fibromyalgia is a condition that affects between one and three percent of the population throughout the world, most of whom are female. It is most commonly diagnosed in the 30-45 year old age group, but is found at all ages, from young children (often diagnosed as growing pain) to people over 80. In many cases, people have had low grade fibromyalgia for many years.
Fibromyalgia has had many names in its history, but by looking at descriptions of illnesses it has been around for years (it was first described in the 1800s).
The most common symptoms are pain in all areas of the body (but not necessarily equal in all), disturbance of sleep and tiredness. Many people have additional symptoms. In about 20% of cases, fibromyalgia can be linked to an event such as trauma or a virus.
Although many theories exist about the cause of fibromyalgia, none have been proved. It is becoming apparent that the abnormality involves more than the muscles, it also involves the central nervous system and the brain. It involves the way pain is handled by the brain, meaning that even sensations such as wind on skin are perceived as unpleasant or even painful.
A condition that can be present with fibromyalgia, or present without it is MPS or Myofascial Pain Syndrome. In this condition pain is centred in the muscles, people have trigger points not tender points. Trigger points are places on muscle,bone, fat, tendons & facsia and tendons that when pressed cause pain to radiate in predicable patterns (as described in Travell and Simon's Trigger Point Manuals). MPS frequently follows trauma, injury, and overuse injuries (e.g. persistent shoulders forward posture). If not addressed early or if the initial "insult" to the system was widespread the myofascial pain can spread from being localised to generalised. Initially these conditions were thought to be the same, however they are not, but can be found together. Because of the initial link, a lot of information on myofascial pain and fibromyalgia is often found together.
How do I know I've got it?
There is no specific test for fibromyalgia, although investigators are exploring many paths. In the past, in order to study fibromyalgia, the following criteria were set up:
- Normal blood tests - excluding other pathology.
- Chronic fatigue: severity may vary to extreme.
- Non-restorative sleep.
- Axial skeletal pain (cervical pain, anterior chest or thoracic pain, low back pain).
- Tender points. 11 out of 18 points painful to light touch (fingernail just blanching). These are specific points that are found in all 4 regions of the body (above and below the waist, left and right side). The classical points are in occiput muscle insertions, low cervical, trapezius, supraspinatus, muscles (specific places in each). Second rib, lateral epicondyles, gluteal, greater trochanter, knee (again in specific places).
However, it is important to realise that everyone can have good and bad days. On some days more symptoms my be present than others. A period of increased symptoms is known as Flare.
Although tender points are part of the way of diagnosing fibromyalgia, the primary problem with fibromyalgia is not in the muscles, but at a more basic level (metabolic meaning at the level of how cells work and send messages to each other, much research is still to be done (and being done). Pain handling by the brain is the fundamental in fibromyalgia, but there's no specific test or sign for this.
Not surprisingly with this, some people also become depressed, and may also require treatment for this. Another increasingly recognised phenomena is that of fibro-fog (fuzziness in thought, forgetfulness, short-term memory seems to go to pieces).
What can be done?
The most important step in rehabilitation and management of the condition is to take control and responsibility, and to be actively involved in your rehabilitation. It is important to build a team around you, who are people you trust and can talk to, both "medical" and non-medical, namely support groups, friends, maintaining where you can a life not just focused on this problem (this can be very hard at times especially when your energy levels are in your boots).
Fibromyalgia is by definition a non-progressive condition, however many, if not all, people can feel their symptoms increasing at times. This especially happens when factors that are perpetuating it are not addressed. A list of these varies from person to person but can include:
- Reactive hypoglycaemia
- Not taking or getting adequate breaks/rests
- Posture/movement patterns
- Work habits
Note: exercise needs to be carefully and slowly introduced. For example, starting with 5 minutes per day and increasing slowly. Non-repetitive, low intensity and no weights at early stages. Pain that persists 5 minutes after exercise is an indication that too much has been tried.
Medication can be helpful in addressing poor sleep and a variety can be tried. Two in particular are better at restoring more stage 4 sleep which is particularly deficient in fibromyalgia, these are amitriptyline and Benadryl. However some people will not tolerate these and others may need to be trailed. Benzodiazepines are often counterproductive, and should be avoided if possible.
Pain relief can be difficult to sort out as fibromyalgia is not an inflammatory condition. Anti-inflammatories are not required for this effect, but may be used for their analgesic properties (though they may be associated with more side effects than paracetamol or paracetamol combinations such as paracetamol and codeine). Some patients may require stronger analgesia, such as Tramal, a drug similar in action to morphine but without the adverse effects. The important thing with pain relief is that it be regularly taken, as pain is easier to manage and control with lower doses of medication if it is taken regularly.
Other medications that people find helpful are those to control other perpetuating factors. For example, nasal steroids for sinus disease.
Other perpetuating and associated factors include arthritis, carpal tunnel syndrome, chronic fatigue immune deficiency syndrome, depression, diabetes mellitus, HIV & AIDS, hypoglycaemia, hypothyroidism, hypermobility of joints, lupus myositis, systemic lupus erythematous, multiple chemical sensitivities, multiple sclerosis, post polio syndrome, raynauds phenomenon, reflex sympathetic dystrophy syndrome, seasonal affective disorder, tempomandibular joint problems, yeast infections, vulvodynia, posture, breathing pattern (not a complete list but a start).
Non-drug treatments include:
- Exercise (which needs to be very carefully prescribed and monitored)
- Addressing posture, and strengthening of muscles (very carefully, not work hardening)
- Physical therapy (especially by those trained in myofascial release techniques. Also helpful are local heat, massage, ultrasound and other rehabilitative techniques)
- Some people find working with medical or Chinese herbalists or naturopaths helpful.
- Working with a psychologist, occupational therapist, or pain clinic to develop skills (e.g. relaxation, biofeedback, and others) to enable you to modulate and learn to cope with the pain)
Your primary care practitioner or local support group can give you names of practitioners in your area.
Unfortunately surgery is not a cure for fibromyalgia. If any surgery is required for other conditions, it is important that both the surgeons and anaesthetists know so that optimal attention can be paid (especially to patients position in operating theatre and post-operative analgesia) so as not to exacerbate conditions (especially for those with MPS or FMS/MRS).
Controversies in treatment
Many treatments at this stage are still anecdotal. Scientific thought has suggested treatments that may help, but it is difficult to do randomised controlled double-blind trials (the optimal kind of medical evidence) on these.
For example, Dr P. St Amand-Guiafenesin, whose protocol can be accessed. The role of nutritional supplements (e.g. chromium).
Some with the reactive hypoglycaemia find The Zone diet by Dr Barry Sears helpful, others find looking at the glycaemic index of food helpful.