What is fibromyalgia?

For many people a diagnosis of fibromyalgia syndrome is a relief - at long last there is a name for what is wrong - and an assurance that it is not progressive or fatal. In fact, fibromyalgia is now recognised as being a common disorder, that predominantly affects women, and is the second most commonly diagnosed musculoskeletal disorder in the US.

The word "fibromyalgia" can be broken down: "fibro" means fibrous tissue, such as tendons and ligaments; "my" means muscle; and "algia" means pain. Hence, pain in muscles and fibrous tissues. (In fact, the pain of fibromyalgia appears to be an all-over pain sensation, described as "widespread".) A syndrome is a group of syptoms that occur together and characterise an illness.

Until recently, fibromyalgia was often regarded as a psychological illness, because no physical evidence of the cause of the symptoms could be found; at other times it was regarded as psychogenic rheumatism, fibrositis or (because of the extreme fatigue associated with the condition) as "ME" (myalgic encephalomyelitis) or chronic fatigue syndrome. Important advances over the past 20 years, however, have led to the recognition that it is a condition in its own right, and this has led to a great deal more research into its causes and treatment.

Diagnosing fibromyalgia

The main symptoms of fibromyalgia are widespread pain and profound fatigue. There may also be morning stiffness and sleep disturbances. With these symptoms, a diagnosis of fibromyalgia may be made if there are accompanying "tender points", which are specific to fibromyalgia.

Tender points

The diagnosis of fibromyalgia is mainly based on the presence of a set of tender points at certain precise locations on the body. These tender points can be extremely painful when pressed but otherwise they may not hurt at all. There are 18 sites for tender points and a person with fibromyalgia will have at least 11 tender points at these sites. Tender points can occur with other conditions and your doctor may order various other tests to ensure other conditions are not present.

Fibromyalgia often accompanies rheumatoid diseases and other autoimmune diseases.

Widespread pain

People with fibromyalgia usually say they "hurt all over". It is a little like toothache in that it could be an ache, a sharp pain, a burning, gnawing or throbbing. It can also seem to move around to different parts of the body at different times. Using a part of the body (such as carrying a bag of groceries, writing a letter, walking) can cause that part to be more painful. Stress, the weather, activity or inactivity may cause the pain to flare, while at other times it seems to get better or worse for no reason at all.

Fatigue

For some, the fatigue of fibromyalgia is hardly noticeable while for others it is profound - like the exhausted feeling that comes on with the flu. This exhaustion may come after a period of exercise or during a social event. Or you may manage things easily one week and not the next. The fatigue is likely to get worse as the day goes on, it may always be present to some degree or it may suddenly sweep over you like a wave, causing you to want to lie down.

Rest is, in fact, the best way to deal with this kind of fatigue. Sometimes only a few minutes spent resting may be enough, but other times a whole day of rest may still leave you wishing for more.

Morning stiffness

When you get up in the morning, much of your pain comes from stiffness. It can also occur after sitting, even for a short time. This can make it difficult to work, drive a car or even enjoy going to the movies or any other event where you have to sit still for a long time.

The best way to avoid pain from stiffness is to keep moving around. When driving, take frequent rest stops. In your job, get up and move around every 20 minutes or so, but at least have a good stretch in your chair frequently. You cannot help getting stiff overnight, but to minimise this pain, have a hot shower as soon as you get up, taking a few stretches while you are in there.

Sleep disturbances

Most people with fibromyalgia have difficulty achieving restful, restorative sleep. During the night, people normally go through several stages of sleep: firstly, rapid eye movement (REM) sleep - the dreaming stage - and then non-REM sleep, labelled alpha to delta, with varying time in each stage. Delta-wave sleep is when most of the restorative work goes on in the body, such as growth and repair. The chemicals needed by the immune system are also produced during this stage of sleep.

Brain waves tests (EEGs) in people with fibromyalgia have shown a reduced quantity and quality of deep (delta-wave) sleep. No wonder people with fibromyalgia wake up feeling so tired!

Other sleep disorders that may occur with fibromyalgia include sleep apnoea (interrupted breathing), nocturnal myoclonus (spasms in arms and legs) and bruxism (grinding of the teeth). Each should receive the treatment generally recommended for that condition.

Some people with fibromyalgia may occasionally experience other symptoms such as muscle tension and myofascial (connective tissue) pain, allergies, dry eyes and mouth, irritable bladder and/or bowel, migraine headaches, tender lymph lodes, sensitivity to the environment, anxiety, mood swings, depression, irritability and trouble concentrating.

Treatment for fibromyalgia

Once fibromyalgia has definitely been established, there are some drug treatments available and much that can be done to "manage" the condition.

Medications

Characteristically, for most people, the pain is not usually helped by analgesics (pain relievers) or nonsteroidal anti-inflammatory drugs. Some people will receive some help from pain relievers such as aspirin, ibuprofen or codeine but it should be remembered that these types of drugs can irritate the stomach. Antidepressants and muscle relaxants may also be helpful.

The two treatments shown in clinical trials to be useful in some patients are: (1) a low dose of a drug called amitriptyline at night; (2) with a low dose of another drug, fluoxetine, that acts on the central nervous system in the morning.

(1) The amitriptyline is given because of its effects on the brain's sleep centre, helping to normalise sleep, and because it has been shown to help control pain in other chronic pain syndromes.

(2) Fluoxetine helps to control pain during the day.

These drugs help some people, but not all, and if they do not work within 4 to 6 weeks, they are discontinued.

Discuss the use of any medications with your doctor. People with chronic pain are encouraged to look at other ways to help manage the pain of fibromyalgia, such as through exercise and rest.

Exercise

The last thing people with pain want to consider is exercise - surely that will only increase the pain? Because people with fibromyalgia find moving painful, they limit their movement. The muscles can then become shorter and weaker because they do not do enough work and the tendons, ligaments and cartilage become more prone to injury.

Exercise for people with fibromyalgia has many benefits - it helps you feel better, increases muscle tone, improves blood flow, eases digestive problems and helps you sleep better at night.

The key to an exercise programme is to start gradually. Walking or pool exercise, for example, might be limited to 5 or 10 minutes to begin with and then be slowly increased. An exercise programme should include stretching, strengthening and aerobic exercise.

Aerobic exercise is particularly important for improving sleep by a non-drug means. Also see the Arthritis New Zealand guidelines for exercise for people with arthritis. You can also talk with a physiotherapist or your Arthritis New Zealand Arthritis Educator about an exercise programme that is right for you.

Physical treatment

Various forms of physical therapy may help ease the pain of fibromyalgia, at least temporarily. They can also improve mobility and decrease muscle tightness. These therapies can include acupuncture, massage or therapeutic touch therapy, infra-red heat, yoga or Tai Chi, transcutaneous electrical nerve stimulation (TENS) therapy, hot and cold packs, and, moving beyond physical therapy, psychotherapy and counselling.

Rest

Rest may not sound like a treatment or therapy but it can be crucial for the management of fibromyalgia. You will need more rest than others - you will get exhausted more quickly and your muscle endurance is lower than average. Try to schedule regular rest periods for certain times of the day. If at all possible, lie down when you rest. Even 5 minutes on the bed or a couch can be quite restorative.

During activity, rest can also be important. Rather than pushing yourself to climb all the stairs when your body is in pain, pause halfway, count to ten and then carry on. This principle can be applied to many other situations as well. Watch for opportunities to rest the parts of your body that you are using the most.

Reducing stress

Stress will aggravate most symptoms of fibromyalgia. Unfortunately, stress is a part of everyday life that cannot be avoided entirely but it is important to look at ways of reducing its effect. Learning to relax has big payoffs for people with fibromyalgia. Relaxation both reduces pain and promotes restful sleep - two major goals of treatment.

Choose a variety of ways to relax both physically and emotionally. Watch television, read a book or mentally picture yourself on an exotic beach. Meditation is also an excellent form of relaxation.

Talk over with your family how they can help you reduce stress in your life. Often just having them understand what fibromyalgia is will help you ease the stress and they may be able to take some of the strain of family life when the pain is getting you down.

Sleep

For those with fibromyalgia, sleep does not do the restorative work for the body and merely increasing the hours of sleep cannot solve the problem. You will still wake up in the morning feeling tired, stiff, aching and grumpy! Sleeping pills can sometimes be used, but sparingly, on the advice of your doctor and for short periods of time only.

People with fibromyalgia can enhance their sleep in a variety of ways other than using medication.

Some tips for a good night's sleep:

• Go to bed at the same time every night
• Darken your room
• Provide "white" noise such as the noise of water or run a fan
• Stretch gently to relax your muscles
• Have a snack before bed - whatever you find soothing
• Cut out caffeine, at least after noon
• Avoid alcohol, especially in the evening
• Exercise in the late afternoon
• Have a hot bath or shower during the evening
• Massage your sore muscles before getting into bed
• Watch TV or read a book before bed
• Use a pillow with built-in neck support
• Persuade the household members to be as quiet as possible
• Use your bedroom for sleep only - ie, don't eat or work in there.

Some of these suggestions may not be practical for your household but talk with your family so they can support you for better management of your fibromyalgia. The outlook for people with fibromyalgia is improving and there are indications that milder cases do respond well to simple treatments and exercise. The management of your fibromyalgia is a team effort and you can help yourself by better management.

Further information and support

Positive Living
NZ Fibromyalgia Information
PO Box 28-552, Remuera,
Auckland 1005
ph 09-578 1958
fax 09-578 1955
email jacqui@voxau.com
website www.voxau.com
Support group information is available from Positive Living, or regional branches of Arthritis New Zealand.

Arthritis New Zealand (see further below for contact details) is a voluntary, non-profit organisation. It supports people with arthritis and related disorders through health, support services, arthritis educators and research programmes.

Original material supplied by Arthritis New Zealand and Positive Living. Reviewed by everybody, July 2005.