There is nothing quite as frustrating as when you are miserably laid up in bed, and the world rushes happily by, oblivious to your sickness and heart-rending suffering. However, the situation would be somewhat worse if from the depths of your torture, you have to cope with a bunch of dim individuals who disbelievingly query the existence of your ailment and rudely suggest you are a mere hypochondriac. Regrettably, this situation is common for sufferers of Fibromyalgia Syndrome (FMS), a chronic condition more commonly known as Fibromyalgia (FM). Although FM is extremely debilitating and disabling, the lack of understanding about this illness often leads to psychosocial implications for its victims. Moreover, most patients with FM do not present outward indications of the severity of this condition. No wonder FM is sometimes dubbed by its desperate sufferers as "the invisible condition of the irritable everything syndrome"!

In today's ultra scientific and technological era, there is still a widely spread irrational belief that misunderstood conditions such as FM are the latest psychogenic fad afflictions. This is one of the reasons why FM is labelled as a "wastebasket" diagnosis, which simply means that real pathology is not acknowledged. The bleak reality is that most medical professionals who support this view either blatantly ignore scientific evidence that FM is a true illness, or lack the diagnostic ability to differentiate it from other chronic pain conditions. Yet, FM has been identified as an illness by the American Medical Association since 1987, and by The World Heath Organisation (WHO) since 1993.

FM is not contagious. The condition is not life-threatening. However, it slowly but surely squeezes the life out of its helpless victims over long periods of time. Some sufferers manage to emerge victorious over the deadly grip of FM. Nevertheless, the process is extremely painful and laborious. No one is immune to FM, and the syndrome has no ethnic, geographic or social class boundaries.

Millions of people around the world are affected by it, including an estimated 750,000 to 1.5 million in the UK. About 80 to 90 per cent of FM patients are female, though research has not determined a reason for this. The majority of sufferers are mostly between the ages of 20 and 50; however, onset of FM in childhood or in the teenage years is not uncommon. Insensitive individuals who see no point in raising awareness about FM should know that they could be directly responsible for exposing the most vulnerable age groups (children and teenagers) to discrimination and prejudices.

In 1992, The Copenhagen Declaration defined FM as a painful, non-articular condition, predominantly involving muscles, and as the most common cause of chronic, widespread musculoskeletal pain. Other symptoms include persistent fatigue that leaves you literally drained out with exhaustion, generalised morning stiffness and non-refreshing sleep. However, these are not the only debilitating symptoms that sufferers of FM have to bear. There are currently no specific tests for FM, therefore this syndrome may be hard to diagnose. Routine laboratory testing and x-rays may be conducted, and the patient's medical history is assessed to rule out conditions presenting similar symptoms.

Rosanne Caruana, president of Fibromyalgia Malta - a support group for this condition presently numbering about 70 members - points out that FM is diagnosed in patients who have widespread pain in all four quadrants of the body. Moreover, such pain has to be continuous for at least three months. Sufferers should also present 11 or more tender points out of the 18 reference sites used for FM. Patients are highly sensitive to pressure applied to these specific points.

Ms Caruana, a woman in her early 40s who is at present virtually housebound with FM, sustains that although the symptoms of FM are terrible, the feeling of hopelessness and helplessness that grips misunderstood sufferers is the most torturous ordeal. She set up the Fibromyalgia Group last February in an attempt to offer continuous support to Maltese FM sufferers and their carers.

"When I was initially diagnosed with FM I was not told what this condition was. I felt very confused and scared. Relatives and friends were just as baffled. It took a long time for me to get to grips with this illness. I am determined that this does not happen to other FM sufferers. I want to be able to make a difference, " claims Ms Caruana.

The National Health Service in the UK maintains that FM can be caused by several factors including viral infections, physical or emotional trauma and hereditary factors. Research has also indicated that people with FM tend to have a deficiency in serotonin and a resulting imbalance of Substance P - a spinal fluid that transmits pain signals. This leads to disordered sensory processing.

A typical FM sufferer flounders in confused pain and discriminatory attitudes for a number of years before being diagnosed. During this period desperation and depression can easily set in, and one can easily conclude that he/she has been invaded by a malignant entity. This affects both psychological and physical well-being.

William Mifsud*, a 42-year-old married man with two kids, woke up one fine morning two years ago completely paralysed with pain. William, who had no onset symptoms except for fatigue in previous months, relates the frustration and the ordeal he and his family went through as he hopped futilely from one general practitioner to another in the hope of discovering the cause of his debilitating condition. By the time he was diagnosed, William had been alienated from most friends and relatives who were convinced he was inventing or exaggerating his symptoms.

He says: "I was really hurt at some people's attitudes towards me and my condition. Some were convinced I was just depressed, while others explicitly suggested that my illness was a figment of my imagination." Regrettably, FM sufferers are frequently subjected to such derogating attitudes. This is highlighted in Starlanyl and Copeland's 1996 book, Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual: "Because your condition is more or less invisible, friends and family may not believe you when you hurt... You may be deprived of the normal support that forms around a chronically ill person because 'you look just fine'."

FM can be quite disabling, and afflicted sufferers might not be able to function as active participants of the work industry. fl fl William, whose occupation involved handling heavy containers and long driving sessions, eventually lost his job and his self-esteem due to his deteriorating health. Moreover, he was refused disability benefits. With two young children to support, William felt trapped in a pit of desperation. "Sometimes I nearly gave up. The pressure was too much to bear. I saw myself as a burden on my family. Without the support of my wife I do not know how I would have survived," he asserts. As a last resort, his wife, his principle carer, entered the workforce and became the main breadwinner. Although after various struggles William was finally granted welfare benefits, these were still too meagre to survive on.

This compounds the work-related injustices faced by FM sufferers. In many cases social awareness of FM and minor alterations to the work environment can allow an FM sufferer to continue his/her line of work with dignity. In fact, a recent study conducted in Sweden concluded that despite limitations, 35 per cent of FM sufferers managed to hold on to their occupation when appropriate adjustments to their work environment were made. Support from colleagues is also of utmost importance. In Malta, there is undoubtedly an urgent need to raise consciousness among employers to promote adequate physical and psychosocial work environments for FM patients, and sufferers of chronic painful conditions.

FM does not reduce life expectancy; however, few recover fully from this condition. Sometimes the agony literally wrecks your system and the will to survive. The body is therefore triggered into a self-defence mechanism, where the senses are deadened, the tongue feels thick and stiff and the eyes are veiled. During this period an FM sufferer's movements are slow and clumsy, and are frequently accompanied by cognitive and memory impairment. This is often described as "fibro fog" or "brain fog". As terrifying as such episodes might seem, most victims of FM welcome "fibro fog" as a respite from the unbearable pain.

Different medications are prescribed to alleviate symptoms of FM such as low doses of tricyclic antidepressants (TCAS) for pain control and to promote better sleep, selective serotonin re-uptake inhibitors (SSRIs) for people with depression to address serotonin deficiency, non-steroidal and anti-inflammatory drugs (NSAIDs) or opioid or narcotic analgesics to reduce the level of pain, mild tranquillisers to treat anxiety and muscle spasms, and local anaesthetic injections with corticosteroids for localised pain relief. However, according to scientists at the University of Missouri-Columbia, patients with FM who exercise and practice relaxation and other non-drug techniques report fewer symptoms such as pain, fatigue and morning stiffness than do patients who receive medication alone.

Dr Mark Pellegrino, an FM, sufferer and author of various books on FM, including Up Close and Personal, highlights the importance of light conditioning exercise to FM patients. Such exercise includes self-passive stretching techniques, cycling, aquatics, low impact aerobics and walking.

There is no doubt that sleep management, heat, rest and reducing stress can enable some people with FM to retain a healthy lifestyle. Avoidance of nasal decongestants, excess alcohol and caffeine, and adhering to a healthy balanced diet are also of great benefit. Self-help measures include cognitive behavioural therapy, counselling and anxiety management techniques. Complimentary therapies, including acupuncture, massage sessions, relaxation therapy, postural training, chiropractice and osteopathy, may promote relaxation and are useful in the management of FM.

Our stigmatising "health-obsessed" society frequently depicts individuals suffering from severe physical ailments such as FM, as grumpy folk dominated by psychological problems who lack the will to survive. However, this is far from the truth! Most FM sufferers might at times be overcome by depressive thoughts but this is often a result of long periods of illness and immobility. In spite of this, many still crawl to work every morning or strive to perform tasks at home, boldly face discriminatory attitudes, and willingly extend a helping hand to confused individuals in similar ailing predicaments. Anyone willing to aid an FM sufferer should therefore refrain from compassionate stares or making annoying insinuations about how healthy and well the person in question looks despite the illness.

All that is required is your full emotional assistance and encouragement. Such loving support can make a world of difference, and literally transform an FM sufferer into an FM survivor!




20070616-lifestyle--fm2.jpgSigns and symptoms

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day. Common signs and symptoms include:

• Widespread pain. Fibromyalgia is characterised by pain in specific areas of your body when pressure is applied, including the back of your head, upper back and neck, upper chest, elbows, hips and knees. The pain generally persists for months at a time and is often accompanied by stiffness.

• Fatigue and sleep disturbances. People with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep. Some studies suggest that this sleep problem is the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. So people with fibromyalgia miss the deep restorative stage of sleep. Nighttime muscle spasms in your legs and restless legs syndrome also may be associated with fibromyalgia.

• Irritable bowel syndrome (IBS). The constipation, diarrhoea, abdominal pain and bloating associated with IBS are common in people with fibromyalgia.

• Headaches and facial pain. Many people who have fibromyalgia also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders. Temporomandibular joint (TMJ) dysfunction, which affects the jaw joints and surrounding muscles, also is common in people with fibromyalgia.

• Heightened sensitivity. It's common for people with fibromyalgia to report being sensitive to odours, noises, bright lights and touch.

Other common signs and symptoms include:

• Depression • Numbness or tingling sensations in the hands and feet (paresthesia) • Difficulty concentrating • Mood changes • Chest pain • Dry eyes, skin and mouth • Painful menstrual periods • Dizziness

• Anxiety
Causes

Doctors don't know what causes fibromyalgia. Current thinking centres around a theory called "central sensitisation". This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals. Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors (neurons) - which receive signals from the neurotransmitters - seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.

It's likely that a number of factors contribute to the development of fibromyalgia. Other theories as to the cause of fibromyalgia include:

• Sleep disturbances. Some researchers theorise that disturbed sleep patterns may be a cause rather than just a symptom of fibromyalgia.

• Injury. An injury or trauma, particularly in the upper spinal region, may trigger the development of fibromyalgia in some people. An injury may affect your central nervous system, which may trigger fibromyalgia.

• Infection. Some researchers believe that a viral or bacterial infection may trigger fibromyalgia.

• Abnormalities of the autonomic (sympathetic) nervous system. Part of your autonomic nervous system - the sympathetic, or involuntary, system - controls bodily functions that you don't consciously control, such as heart rate, blood vessel contraction, sweating, salivary flow and intestinal movements. It's thought that sympathetic nervous system dysfunction occurs in people with fibromyalgia, particularly at night, which leads to fatigue, stiffness, dizziness and other signs and symptoms associated with the condition.

• Changes in muscle metabolism. For example, deconditioning and decreased blood flow to muscles may contribute to decreased strength and fatigue. Differences in metabolism and abnormalities in the hormonal substance that influences the activity of nerves may play a role.

Psychological stress and hormonal changes also may be possible causes of fibromyalgia.
Support for FM sufferers in Malta

In Malta FM sufferers can find support by joining Fibromyalgia Malta. This organisation can be contacted by mail at PO Box 9970, The Times, 341, St Paul Street, Valletta, by e-mail: fibromyalgiamalta@yahoo.co.uk or by phone on 9940 9963.

Fibromyalgia Malta organises monthly meetings, where a number of educational talks are held by professionals and information about FM is provided. The next meeting will be held at Karitas, 5, Lion Street, Floriana, on Wednesday at 6 p.m. FM Sufferers and their carers are encouraged to attend.

Individuals suspecting they have FM should seek medical advice from the vast number of qualified medical practitioners on the island.

Dr Bernard Coleiro, an esteemed rheumatologist with experience in the FM field claims: "Despite scepticism regarding the existence of FM, there has been increasing evidence over the years indicating that this condition exists as a discrete syndrome with a consistent set of symptoms and signs. Before assuming the presence of FM however, other conditions that may give rise to similar symptoms first need to be excluded by a physician's assessment including appropriate investigations. An understanding of the condition by patients, relatives and friends, a light, graded exercise programme and appropriate medication may all help to alleviate the suffering associated with fibromyalgia."

Sign up to our free newsletters

Get the best updates straight to your inbox:
Please select at least one mailing list.

You can unsubscribe at any time by clicking the link in the footer of our emails. We use Mailchimp as our marketing platform. By subscribing, you acknowledge that your information will be transferred to Mailchimp for processing.