ME/CFS AUSTRALIA (SA) INC
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Fibromyalgia, so difficult to explain, so hard to be understood, and yet so painful
Monday 13 October 2014
Fibromyalgia, so difficult to explain, so hard to be understood, and yet so painful
At first glance, Christian, Veronica and Christabel look like typical young adults. Should you overhear their conversation, you might hear them speaking of constant headaches, exhaustion, and difficulty in keeping up with workload, both at schools and at their part time jobs. Are they simply grumbling? The simple answer is no.
These young people suffer from a medical condition called Fibromyalgia (FM), which causes individuals to experience widespread pain and constant tiredness. Even a flight of may become too difficult to handle sometimes. "It feels like carrying someone on your shoulder, and having to carry their weight along with yours. Running from one classroom to another is a struggle, and by the time I get to class all I can think about is going to sleep. Travelling by bus to school is also tiring, each bump is too painful," Christabel says.
There is no direct test for FM; it is rather diagnosed through exclusion. Symptoms include chronic muscle pain, severe fatigue, insomnia, abdominal pain, nausea, sensitivity to light, anxiety, feeling of swelling, without the actual swelling and an irritable bladder. Many call it the umbrella condition, because it seems to collect together a number of other medical conditions. It is also known as the invisible illness, because it is not evident upon sight.
Christian Muscat started suffering from severe headaches at the young age of 15. For years, he made several visits to different doctors. He was recommended to undergo blood tests several times, but each time, all resulted well. It was only after six years that doctors agreed he is suffering from Fibromyalgia.
Christabel started experiencing muscle pain and extreme fatigue from a very young age. However, doctors always put it down to stress, and she was told to be suffering from depression and prescribed anti-depressants. Veronica's symptoms had been going on for over two years, however she was only diagnosed a few months ago.
During their teenage years, the two youngsters experienced severe muscle pain; however, they were always told they were simply 'growing up pains'.
Being a student suffering from Fibromyalgia is a challenge of its own. Keeping up with the academic workload while experiencing relentless fatigue is one. Having a brain fog and not remember what you've just read is another. And how difficult is it sitting through a three-hour exam? "We fully comprehend the subject, and we do make an effort. But by the time I turn over the page, I would have forgotten what've just read," they explain.
Those with Fibromyalgia suffer from what is termed as fibrofog - cognitive difficulties such as confusion, lapses in memory, word mix ups and concentration loss. Studies have shown that this might be down to the brain not receiving enough oxygen. Other studies suggest that the chronic pain itself may affect the brain.
"I do love learning, and I want to continue on to eventually getting a postgraduate degree in Psychology. But I do fear I won't be able to keep up." For the fourth consecutive time, Christine is starting her first year at sixth form. She's had to drop out several times, simply because she felt physically unable. Having an early lecture usually means I have to miss out on later classes, because I would have to go home and rest. "Your body, and not your mind, is in control," Veronica adds.
Veronica also aims at continuing her studies further. She dreams of working as a translator abroad one day.
Fibromyalgia may hit even the most active of individuals. Christian was involved in theatre and dance for years. However, it soon started becoming too much for him. "I would be fine during the performance itself, due to the adrenaline rush that sets off. But straight after one show, I would be exhausted to the point that I need to stay in bed. There is a limit to what we can do in one day."
Living alone with such condition is possible, but a constant challenge. For others, it might be nearly impossible. The youngsters admit they've all needed help getting out of bed, or climbing a flight of stairs a number of times. However, none of them have allowed themselves to become dependent on others
But perhaps the worst part of suffering from Fibromyalgia is trying to explain your condition to others. "People ask where it hurts, but it's usually an all-round pain. It's difficult to describe.
"Making plans to go out and then cancelling last minute does not go down well with my friends. They think I'm making up excuses. And I can understand that. But it's upsetting not being able to socialise because you just want to sit down, even if you're at a club. And the noise at some clubs in Paceville is too much to handle," Christian says.
The same issues continue at the workplace.. We've all had managers calling us down to our office questioning our use of sick leave. "Try explaining that to your boss, when you're looking so healthy. Some employers are very supportive, but it is understandable that at the end of the day, they have a business to run," Veronica explains.
"I'd love to have a family of my own one day. But having children is a big question mark," Christabel says. "Would I be able to take care of my own child?"
"There comes a point when you need to accept what you can and cannot do. And that for me was the worst part, because I had to give up a lot. Juggling between so many activities was no longer in question."
Originally, doctors believed that fibromyalgia is a psychological disorder. However, over the years, doctors have started to accept the disorder as being a physiological, given it physical symptoms. As such the disease is a relatively new diagnostic entity.
"We do not believe our condition is psychological. However, it does have a huge psychological impact. You become anxious about proofing yourself, you stress because of the workload, and then you start getting the pains again. It's all one viscous cycle."
Medication to control the pain is available. However, like other medicines, it has its side effects.
"I'm not sure whether medications help or not. But when you're in a lot of pain, you become desperate, so you take medication hoping it will somehow settle down."
The youngsters are calling on authorities to take Fibromyalgia in consideration. "Perhaps seminars for educators and academic staff could be held, to make them aware of the condition. In addition, we are asking for concessions during examinations. Sitting for long hours causes unbearable pain. Sometimes stress can cause a horrible flare-up, and you might even end up missing an examination."
Mornings are the worst for those suffering from Fibromyalgia. "No matter how much we've slept, you wake up feeling tired."
The ME, CFS and FM Association Malta incorporate members suffering from Fibrolyalgia, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), aiming to help sufferers in the best way possible, and offer support to each other.
The exact cause of fibromyalgia is unknown. However it is believed that it is caused by abnormal levels of chemicals in the brain, and changes in the way the brain processes messages around the body.
Some adults suffering from Fibromyalgia are unable to work, due to the pain. Also, they do not qualify for any social benefits. Recently, a working party was set up to address such conditions, however results so far have proved unfruitful.
The above originally appeared here.
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