Fibromyalgia: The invisible chronic condition

A disease that comes with added social stigma can only cause additional and unnecessary suffering. This has often been the case both with Fibromyalgia, ME and chronic-fatigue syndrome sufferers.

Despite debilitating symptoms, people diagnosed with such conditions have been accused of suffering an 'imaginary illness' while experts have struggled to distinguish the ailing from the malingering. Nonetheless, evidence has grown in recent years that the syndrome is real with various experts suggesting several causes for the conditions.

So what does a Fibromyalgia diagnosis mean? Is there hope that things will get better?

Rosanne Caruana says that she had never heard of FM before she was diagnosed, despite having worked as a nurse. Caruana adds that "it was never even mentioned as part of my studies leading to the profession".

But where have these related conditions led her?

Fibro in particular has driven her to "live like a prisoner in my own home", Caruana says, comparing herself to "Florence Nightingale, who is also known to have suffered from the condition that had apparently come through an infection trigger, and who was finally bedridden in 1896 followed by her death four years later after a long battle with the illness".

Caruana had to give up her nursing job as a result of the conditions she suffers - Fibromyalgia - and as if that weren't enough - Myalgic Encephalomyelitis (ME).  

"Thank God I'm single," Caruana says, adding that "if I had a family I definitely wouldn't cope, besides as a result of my condition I have no social life left and no friends to speak to and I can barely do any basic house chores. If it weren't for my brother, the situation would be far more worse than it is."

Researchers suggest that FM is very hard on married couples because "their lives are changed dramatically". 

Fibromyalgia is a condition that causes chronic, widespread pain throughout the body, chronic fatigue and sleeping problems.  Other symptoms are also present, which might vary from a person to another, such as IBS (irritable bowel syndrome, TMJD (temporomandibular jointdysfunction), chronic headaches, fibrofog and much more. Myalgic Encephalomyelitis is a neurological and multi-symptom illness. An illness which usually starts up like having flu symptoms for weeks and even months and instead of getting better the person feels worse.

It is an acquired complex and debilitating disorder that is characterised by profound fatigue and cognitive problems, which do not improve with bed rest and become worse with physical and mental exertion, practically on the same lines as FM and even worse. Most of ME sufferers are bedbound or housebound, in certain cases even FM sufferers might become bedbound and or housebound.

Both these conditions can mimic those of flu and other viral infections or illnesses, so it is often mistaken for other disorders, and by the time one is diagnosed, the condition would have worsened. However, no concrete cure exists to treat the conditions yet. Some sufferers may find benefits from alternative therapies, herbal remedies and medications to help relieve the pain and improve sleep slightly. Still, there are those who don't find any pain relief, nor get a good night's sleep.

At first, both FM and ME may be misdiagnosed as hypochondria, psychosomatic illness, or depression, because routine medical testing does not detect any problems, resulting in the patients being stigmatised as whiners.

Caruana, who was diagnosed with FM 10 years ago, followed by ME, suffers from panic attacks every now and again because of her fear of not being able to perform basic chores, such as cooking for herself. Panic attacks are also common in these illnesses. To make matters worse, Caruana is also a Coeliac. This is an autoimmune disease - a condition where the person must only consume gluten-free and wheat-free foods.

Ten years down the line and Caruana is still struggling with the pain and fatigue associated with FM and ME and the psychological conditions that come about along the years.

"I was 37 years old when I was diagnosed with FM. I had seen a number of doctors before I was diagnosed. All the tests I underwent were all fine since FM cannot be detected through blood tests," Caruana recalls.

"It all started the morning after a day out with my colleagues. I woke up with aches and pains and muscle stiffness in my arms, accompanied by fatigue. I couldn't even lift my arms up. It was as if a block of concrete was placed on me.

"As I am a nurse, I thought it was normal to have some pain or fatigue following a 12-hour shift.

"I used to go swimming in a private pool frequently but I never felt better after. In fact, it wasn't doing any good, as it transpired later."

However, Caruana says that some people do get relief from swimming but in her case it only made her feel worse.

"My GP had thought the symptoms were related to coeliac disease or arthritis.

"In between the blood tests and other wrong diagnosis, it took months even years before I was actually diagnosed with FM. I was asked by my family doctor to consider consulting a rheumatologist. On examining me, every pressure point he touched resulted in pain."

FM presents itself with pain on 18 tender points on bilateral sides, during a medical examination alongside with other symptoms mentioned above.

Caruana says that she decided to get a second opinion from another doctor to determine her diagnosis. "At this stage I was still working 12-hour shifts since the doctor hadn't told me to reduce my working hours.

"If I was diagnosed today with FM, with the knowledge I have of the condition, I would reduce my working hours there and then because a FM sufferer cannot work, especially for long hours, while having to stand the pain and fatigue associated with it and which could worsen the situation."

"Due to these conditions, sometimes I have difficulty speaking and choosing words appropriately, and many times I experience a foggy-type of feeling in my head."

This is referred to as 'Fibro-fog' or 'brain fog'.

Caruana says she has her few good days but then it seems like the bad days always return with a vengeance.

"I am finding it more and more difficult to maintain my activity levels at anything resembling what I used to do.

"I am generally not a whiner, and when I used to go to work, it was normal practice for me to try to win over the situation and just push on through. However, as months and years passed, it was becoming harder and harder to work."

So how does Caruana feel about the changes she has had to encounter due to her illness?

"I not only have pain and as a result exhaustion but I also feel very anxious at the loss of my life as I knew it. Besides the pain varies from mild to moderate to severe. I can live with mild and moderate pain (where one has to resort to medication but in my case cannot because as a result of certain long-term medication I developed a peptic ulcer and other gastric problems), but the severe pain is unbearable and while one might think that getting rest can reduce the pain, it's definitely a complete fallacy.

"Presently I am still trying to find the right alternative therapy which might help me personally. I am experimenting on a trial and error basis and will continue doing so until I feel better. I try to avoid medical treatments if possible, but on experiencing severe pain I try to subside it as soon as possible."

Caruana had to abandon her job on medical advice at the Maternity Ward within St Luke's Hospital, a job which she held dear.

When asked what helps her reduce the pain - at least for a short while - Caruana says that "some alternative therapies do exist which might help FM sufferers", however she insists that "not everyone can reap the same benefits from the same therapies.

"Hydrotherapy, physiotherapy, therapeutic massage therapy, homeopathy, chiropractic care, osteopathy, acupuncture, natural remedies like flower essence remedies are some of the therapies a FM sufferer can resort to.

"A certain medicinal product is normally prescribed to some FM sufferers, but this medication is normally prescribed to people to get relief from neuropathic pain or certain types of seizures. But researchers have found that it may help some FM patients. In fact, recently, the price of this medicinal product was reduced."

Which age bracket is FM associated with, I asked Caruana? "Children as much as adults do suffer from FM, however the age bracket normally associated with FM is 25 to 45."

And since Caruana formed part of the FM association, I ask her whether she knew if there was a high incidence of people suffering from this illness in Malta?

"There were 200 members in the association but since I created the Facebook page I have seen an increase in sufferers who had never subscribed with the association before when it was active." At present, over 250 persons have been diagnosed with FM.

Caruana says that she would like to see the "government recognise both FM and ME as chronic conditions, as a disability, and to be entitled to free medicines or supplements according to our individual needs while spreading more awareness on both these conditions.

"And once more awareness is spread, people won't view us as whiners any longer because it's very hard to understand that a person looks physically okay but is constantly in pain and fatigue. And this is why FM is referred to as the invisible disease."

According to the World Health Organisation,  "disability is any restriction or lack (resulting from any impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Fibromyalgia is included in the 10th revision of the International Statistical Classification of Diseases and related Health problems (ICD-10) published by WHO in 1992.

When asked why she had to give up the role of president of the FM association and have it shut down, Caruana said that she hadn't a choice but to resign, adding that the time came "when I needed to take care of myself".

"As a committee," Caruana adds, "we were always asking for other members to join and constantly told them that if this did not happen the association will have to be discontinued. In fact due to a lack of members who offered to join, the association had to close down.

"It had become a problem to keep up with the association with only two committee members, where most of the time I ended up doing all the work and research all by myself, besides managing the association."

However, today Caruana hosts a Facebook page dedicated to FM sufferers who share their experiences on FM, because "I feel that one feels a little bit better on sharing his/her experiences". Caruana is also involved in the Facebook ME Sufferers Malta.

"All FM sufferers are welcome to join in the Fibromyalgia Facebook Group in Malta. Those with ME can join in the ME Sufferers Malta."

Rosanne explained that "ME Sufferers Malta had been founded by Rebecca Sultana, who apart from having the condition herself, always did her best to spread awareness on ME".

For more information, visit: mesufferersmalta.org.