Living with fibromyalgia: You need to get the whole family on board, says mum

As a 27-year-old who had just moved countries back in 1995, Ann found herself in need of an explanation about why she was feeling so low and exhausted. A visit to the rheumatologist confirmed a suspicion; Ann had fibromyalgia.

Not much is known about what causes fibromyalgia, but what is known is that it affects the nervous system and often causes emotional and mental distress. US-based Centres for Disease Control explains: “People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing. Fibromyalgia affects about 4 million US adults, about 2 per cent of the adult population.”

Ann was diagnosed after a physical test, where the doctor put pressure on certain areas of the body – those with fibromyalgia feel more acute pain when these spots are pressed. In addition to this physical tests, doctors may deliver a diagnosis based on medical history, physical examination, X-rays and blood work.

It’s a crippling sort of pain, says Ann, explaining that should someone with the condition push themselves too much, they could find themselves bed bound for weeks. “I had one yoga teacher at a well-known clinic here and she did some very, very rough massages on me, which made me lie in bed for two weeks,” she explains.

Which is why, when she found that she was pregnant 15 years ago, Ann was terrified. “My doctor said, ‘You can’t be on any medication when you are pregnant’,” she recalls.

“I had fear, like, how am I going to manage it? But I was lucky. For some reason my body, my hormones … I had absolutely no fibromyalgia pain. I was full of energy,” she says. She calls it a miracle as in most cases, flare ups during the hormone-heady nine months of pregnancy are common and expected.

Over the years, says Ann, she’s learned to live with the condition and manage the sudden spikes of pain that sometimes show up. Her triggers, she says are:

She adds: “Sound in crowded places is another trigger. I just get very overwhelmed if I spend more than 10 minutes there.”

Now consider this, agony caused by sound and sunlight. New mum to an infant – times could be tough. “When he was younger he didn’t understand it at all,” says Ann. “Fortunately, I had a nanny who helped a lot. My husband was a stay-at-home dad at the time, and that helped a lot. We lived in a community where there were a lot of activities, so he was always active with friends and other kids and so he was quite oblivious to it,” she says.

Over the years though, he’s learnt that his mum is a little different than his friends’. “He understands that his mum gets tired faster, I cannot do certain physical activities with him; his dad gets involved and does them with him. Sometimes I just need to be in bed more than normal people. I need more downtime to relax and let my body rest. I try to educate him but he doesn’t think of it as anything major. He understands it but he’s not connected to it so much,” she explains.

It is important, she stresses to explain the condition – sometimes over and over – to friends and family. Because the aggravation is internal, not external, it’s easy to forget that it’s there. Ann says: “I bought a book called ‘Fibromyalgia for Dummies’ and I gave it to them, because they just couldn’t understand why all of a sudden I had pain and needed to lie down on a family trip, why when they call me, I can’t really talk, I need to lie down. It gets to a point where they are like, ‘Oh, you are always sick’ or ‘Always tired’. Yeah it’s a combination of things but it is what it is. If I had diabetes or cancer, if I was physically sick, people would understand and have patience. But because they can’t see it, they can be very rough on you. You need to educate the people around you.”

And fibromyalgia have a nightmarish effect on sleep. “I can never have that eight hours of straight sleep; I have disturbed sleep, I wake up in the middle of the night and then can’t sleep. For the past two years I wake up between 2 and 3am, I don’t fall asleep until 4 or 5am. And I only fall asleep because I read. And then, you have to get up at 6am to go to work, so it’s very difficult, but you do learn to live with it,” she says.

“You just have to learn what works for you and learn to live with it,” stresses Ann. “So, for me, it is a combination of the normal medication that I have – it’s neurological, if I stop I cannot function – and alternative therapies. You have to know which medication and you have to see a doctor who is right for you. Sometimes, if a doctor doesn’t believe in your pain levels, or doesn’t believe in your condition, he’s not the right doctor. You have to find the right medical practitioner.

“And finally, work with people who understand and are compassionate and don’t push you. It is what it is and just because it’s not visible doesn’t mean the pain level is not there.” An internet study, published by UK-based BioMedCentral showed that 27.8 per cent of physicians discredited patients with fibromyalgia as per the patient’s impression.

Uncontrollable jitters at midnight may be part of the deal but with a little professional help and familial understanding, a fulfilling life is very possible.

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