An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others. Examples include chronic fatigue syndrome, lupus, mental illness, Crohn’s disease and fibromyalgia.
Fibromyalgia is a long term (chronic) condition that causes widespread pain in the muscles, tendons and ligaments all over the body. Despite the fact that it is a painful disease, it is not inflammatory or degenerative. Long term studies suggest that it is not progressive and does not cause permanent damage to the muscles, bones, joints or organs.
The pain can be very bad and affects different parts of the body. Though it is not life-threatening, it can impact the quality of life.
Unlike other conditions with visible symptoms, one cannot tell that a person has fibromyalgia by sight. Widespread muscle pain, fatigue and sleep disturbance are the main symptoms; but the effects of these symptoms vary from person to person and from day to day.
People with fibromyalgia may also have increased sensitivity to pain, fatigue, muscle stiffness, insomnia, cognitive disturbance (known as “fibro-fog”) migraines, restless legs, irritable bowel syndrome (IBS), depression, anxiety, tingling, numbness or swelling of the hands and feet.
Because of the varied symptoms that it presents, which could have other causes, fibromyalgia is often difficult to diagnose.
These symptoms can be similar to those of an underactive thyroid gland (hypothyroidism), arthritis and many other conditions. No specific blood tests, X-rays or scans exist that can confirm a diagnosis of fibromyalgia. It often requires the process of elimination and a patient’s reporting of symptoms for a diagnosis to be made by the physician, mostly rheumatologists.
The exact cause(s) of fibromyalgia are not known, but research suggests it is related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) process pain messages carried around the body. At the same time, some neurochemical abnormalities that occur in fibromyalgia also regulate mood, sleep and energy, thus explaining why mood, sleep and fatigue problems commonly present in fibromyalgia.
In other cases, the condition appears to be triggered by a physical, mental or emotional trauma such as an injury or viral infection, giving birth, having an operation, breakdown of a relationship, the death of a loved one, a period of stress and anxiety.
In other cases, no particular event triggers the development of symptoms.
Our bodies register pain when an area is damaged (as in arthritis) or when there is a physical injury, like stubbing a toe or pricking a finger.
People with fibromyalgia feel pain not because the area that is hurting is damaged or has an injury, but because a problem exists with the way the brain and nervous system process pain from that area.
Since that pain is not due to damage or injury that can be healed, there is no easy way to stop the pain. This is why fibromyalgia is long lasting (chronic), even though the structure of the parts of the body remains normal and undamaged.
There is currently no cure for fibromyalgia, but treatment options are available to help relieve some of the symptoms and make the condition easier to live with.
This can be a combination of medication such as antidepressants and painkillers; talking therapies such as cognitive behavioral therapy; counseling and lifestyle changes such as relaxation techniques and some exercise programs.
Drug therapy may include medication to help with pain, insomnia or depression associated with fibromyalgia. However, most of these drugs can cause side effects, particularly the stronger pain killers. The drugs may include opiate drugs, non-steroidal anti-inflammatory gels, antidepressants and those that can help with insomnia. You may have to experiment with a few drug regimens before you settle for the one that gives optimum results. It is important to note that these drugs do not cure fibromyalgia and do not usually get rid of all the pain.
Living with fibromyalgia is a daily struggle that involves pain, muscle tension, stress, fatigue, depression, muscle stiffness and this negatively impacts the quality of life. With medication to ease muscle pain and improve sleep, muscle relaxants, pain relieving drugs and physiotherapy, a person can be able to live a modest life unhampered by the condition.
Physiotherapy will help improve the posture, stretch and relax the muscles and with time become more active.
Occupational therapy will help manage everyday routine without increasing pain or wearing down the body. Exercises helps reduce muscle tension and stiffness thus helping deal with the pain.
There is no specific diet for fibromyalgia, it is recommended that you maintain a healthy weight and eat a balanced diet with plenty of fruits and vegetables. However, if your IBS is triggered by certain foods, you may need to avoid.
For instance, my IBS gets worse when I eat lactose and gluten containing foods, something I have learnt to avoid and manage accordingly when it occurs.
With fibromyalgia, insomnia is almost always the norm. Patients are advised not to aggravate the situation by having erratic sleep patterns.
Establishing and faithfully following a sleep routine helps; also avoid alcohol, tea, coffee, smoking and watching TV late night. Keep a journal by your bedside to note anything planned for the next day, this helps ease the brain fog associated with this condition.
Deal with any stress or unhappiness at home or at work (stress is a huge trigger to the pain) and avoid stress.
Finally, fibro patients are advised to do as much research as possible about the condition and if there are support groups on the same in your locality, it important to join and share experiences.
The writer is a Fibromyalgia Warrior and Patient Advocate