Dispersing the fibro fog - understanding fibromyalgia
After almost five years of undiagnosed pain Laura Mabey is changing her life, and hoping to change others.
Mabey, 22, who lives in Te Horo north of Wellington, was diagnosed with fibromyalgia in June, abou 4½ years after her first symptoms.
There is no cure for the disorder, which is especially characterised by widespread pain and fatigue.
"My feet feel wet but it feels like an electric current is running down and zapping my nerve," she said. "It feels like my joints are being pulled apart."
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* CFS difficult to diagnose
* Financial hardships of chronic illness
* Fibromyalgia means unrelenting pain
* Living with fibromyalgia
Mabey, a musculoskeletal therapist who runs Back to Balance Kapiti Massage, is holding a support group in Waikanae for others with the disease next week.
There, she will speak about her experience, which began with pain in her stomach, caused by irritable bowel syndrome (IBS).
Soon after, she experienced localised numbness, and in a year, pain had spread throughout her body.
Patients commonly suffer from both IBS and fibromyalgia.
However, they are difficult to diagnose because they are functional disorders, which affect bodily processes but not how the body appears under examination.
Mabey visited a neurologist, gynaecologist, rheumatologist, acupuncturist and more, with no success.
"They thought I was a drunk kid"
Mabey's pain has worsened, and soon she will be checked for chronic fatigue syndrome (CFS), another associated illness.
Her circadian rhythm has been compromised, meaning she cannot fall asleep until the early hours.She also experiences cognitive difficulties and memory loss, the "fibro fog".
She began to take drugs to relieve the pain, but the side effects were overwhelming. Tramadol caused hallucinations and vomiting.
One winter's night in Porirua, she was kicked off the train.
"They thought I was a drunk kid," she said.
The illness forced Mabey to pace herself - not to over-exert on good days, and push herself on bad ones.
A keen horse rider, she dreamed of representing New Zealand.
"Now I do it because it gets me out of bed in the morning."
She is now drug-free apart from mild painkillers.
"I used to be the class clown, the entertainer"
Koputaroa resident Carolyn Dixon, 30 years Mabey's senior, has had fibromyalgia for eight years.
Formerly a diversional therapist, her condition has meant she now volunteers once a week, for six hours, with a group at Levin Baptist Church.
Sometimes she falls asleep at the back of the church, at a group where she is "pretty much the youngest".
Dixon said she had dealt with chronic fatigue syndrome, anxiety and depression alongside her condition.
"I used to be the class clown, the entertainer."
Learning to pace herself
In the last year her symptoms, which include fatigue, pain, and a sensitivity to light and certain smells, have worsened.
Individual pains can last anywhere from seconds to "nine or 10 months", she said.
On St Patrick's Day this year she dressed as a leprechaun for a night out, but it took her a week to recover.
She has tried to live a "blah" existence, isolating herself from the world.
"I'm not that sort of person ... it's boring, isolating and lonely and I'm not myself."
She shared Mabey's frustration with doctors. Since moving to Horowhenua a year ago, she had dealt with five doctors, making it difficult to build a relationship.
Understanding CFS and fibromyalgia
Dixon has been part of WellMe, a support group for those living with CFS, and other conditions causing CFS symptoms, including fibromyalgia.
That has been enormously helpful ... just being with people who understand," she said.
The group has branches in Horowhenua, Kapiti, Wellington and Lower Hutt. They each meet once a month, but regularly check on members' wellbeing, like after last week's earthquake.
WellMe vice chair and Horowhenua community coordinator Sandra Forsyth said it is difficult for those with CFS to sustain a household, car and landline on a benefit..
"This illness brings with it financial devastation, 99.9 per cent of them are unable to work. It's really hard to find employers who allow them to work part-time when they're able to."
Younger people with the condition were often dismissed as "lazy" at school, while Mabey's wait for a diagnosis was "remarkably common".
"It's hugely debilitating and hugely invisible.
"When I talk to people they usually cry. They've been desperate to talk to someone and get validation."
About 85 per cent of Howick Health and Medical Centre GP Rosamund Vallings' patients have CFS, fibromyalgia or both.
The easiest way to think about fibromyalgia was as a set of symptoms rather than a specific diagnosis - it could be caused by factors including viral infection, rheumatological problems, an accident or genetic conditions.
She said doctors were likely to send patients to specialists if they did not diagnose it themselves.
"The list of similar conditions you'd have to eliminate probably goes into the hundreds.
"If you see a lot of them [patients], you become more familiar with them."
- Living with fibromyalgia: Polefusion Fitness, 14a Parata St, Waikanae, November 26, 11am, $10.
- WellMe: Meetings once a month in Waikanae and Levin, for people with fibromyalgia, chronic fatigue syndrome and similar illnesses, call Sandra Forsyth on 0800600113 for more information.