Cape Town - “Severe physical pain” has forced Lady Gaga to postpone the European leg of her world tour.
The singer released a statement on Twitter on Monday explaining she suffers from chronic illness fibromyalgia.
“I have always been honest about my physical and mental health struggles,” the 31-year-old wrote on Twitter. “It is complicated and difficult to explain, and we are trying to figure it out.”
“I’m a fighter,” she continued. “I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life.”
The Bad Romance hitmaker “remains under the care of expert medical professionals”, the statement concluded.
To my fans, I love you so much. pic.twitter.com/g2BmmSx02v
— xoxo, Gaga (@ladygaga) 18 September 2017
For many years fibromyalgia wasn’t regarded as a “real disease”. The chronic, sometimes debilitating pain experienced by fibromyalgia sufferers was considered to be “all in the mind”.
For decades Deléne Very (42), a freelance translator of Parow, Cape Town, sought answers about why she was always tired and in pain. As a child she had to give up gymnastics because she was so exhausted after practice she couldn’t get out of bed the next day.
Later she had to stop doing athletics as well, as the pain in her ankles became too much for her. As a student she relied on tonics and painkillers to get by. Still doctors couldn’t pinpoint the cause.
“All the tests came back negative. I was ‘healthy’ and there was nothing wrong with me, but I felt terrible,” she recalls. In 2002 she woke one morning and was unable to move her arms. “I was hysterical. I went to the doctor.”
Still, there were no answers. It was only in 2010, after a visit to a neurologist, that she was diagnosed with fibromyalgia. “It didn’t take the neurologist long to diagnose me, but for me it’s been a lifetime of sadness,” she says.
“I had dreams I had to give up because of this disease and I never knew what was wrong with me.” Deléne’s deteriorating condition meant she had to quit teaching. “I was at my sickest in 2010 and 2011 and I couldn’t go back to work. I can’t explain the feeling when you realise you’re sleeping your life away,” she says.
“It’s terrible to be 40 and feel 80. I have to choose between whether I should play energetically with my kids and stay in bed for a day or two afterwards, or whether to do something different in the hope that I’ll still be on my feet the next day.”
She’s on treatment but still experiences pain and fatigue. “The worst is when you’re so tired you can’t even lift the kettle.”
Some days her discomfort is limited to pins and needles. “My body is sensitive on the left-hand side. It feels as if something is crawling under my skin.” On other days the pain is intense.
“It’s like something gnawing on your bones. Nothing helps except painkillers and hot-water bottles.”
Even though fibromyalgia usually affects women aged between 20 and 55, men and children aren’t excluded entirely. Samantha Erlank (21), a social science student at the University of Cape Town, was diagnosed with fibromyalgia when she was just 14.
“I had no idea what it was. I was relieved to have a diagnosis after a year of tests and thinking that it’s an emotional problem.”
Her life has changed dramatically. She had to give up hockey and water polo. “Some of my friends couldn’t understand why I wasn’t able to keep up with them any more. Instead of dealing with normal teen problems, I had to deal with fibromyalgia.”
WHAT IS FIBROMYALGIA?
It’s a chronic, widespread pain syndrome, says Dr Brian Sarembock, a Cape Town rheumatologist. Prevalence in the general population ranges between two and four percent, which means it’s quite a common condition, says Dr Francois van Zyl, a rheumatologist of Pretoria.
“One of the hallmarks of this condition is that things that shouldn’t be painful are experienced as painful by fibromyalgia patients,” Dr Sarembock says.
For example, if you lightly knock your arm on the side of a table you might barely notice it but for sufferers it could be excruciating. It affects each patient differently. Some might suffer from depression, while others even experience symptoms usually associated with irritable bowel syndrome.
Fibromyalgia symptoms include:
Chronic widespread pain The exact locations of the pain varies from patient to patient but 18 tender points have been identified. These are located around the neck, shoulders, back, elbows, knees and hips. The type of pain – burning, aching muscles, stiffness, or pins and needles – also varies from patient to patient.
Non-restorative sleep “Between 80 and 90 percent of patients with fibromyalgia complain of fatigue,” Dr van Zyl says. Many patients suffer from sleep disturbances, such as restless leg syndrome, and even those who seem to sleep through the night wake up exhausted.
Depression and anxiety About 20 percent of people with fibromyalgia have either an anxiety disorder or depression, Cape Town rheumatologist Dr David Gotlieb says. Impaired cognitive function Patients also suffer from the so-called “fibro fog”, which relates to impaired cognitive function.
Irritable bowel syndrome Some patients experience nausea, vomiting, bloating, abdominal pain, diarrhoea and constipation. Urological and gynaecological issues Patients may also struggle with urgency of urination, frequent urination, pelvic pain and painful menstrual periods, Dr van Zyl says.
Other symptoms include tension or migraine headaches, dizziness, tingling or numbness in the hands or feet, and hypersensitivity to warmth or cold.
TREATMENT
Fibromyalgia is incurable – you have the condition for life – but that doesn’t mean the symptoms can’t be managed. “A lot depends on how early it’s diagnosed and when you get treatment,” Dr Sarembock says.
“If you have fibromyalgia you’re not doomed. Lots of people cope well.”
Several drugs have proved effective, including certain classes of antidepressants (used to treat pain rather than depression), anticonvulsant drugs used for neuropathic pain and anti-epileptic medication.
Non-pharmacological treatments that are helpful include hot-water therapy with and without exercise, relaxation therapy and physiotherapy. “In a minority of patients – between 20 and 25 percent – acupuncture can be helpful,” Dr Gotlieb says.
Low-impact cardiovascular exercise, such as swimming, can also help. Depression and anxiety feature heavily in fibromyalgia populations, which is why many experts advise patients to see a psychologist or therapist. There’s no one-size-fits-all therapy, says Catherine Govender, a lecturer at Unisa’s department of psychology.
WHY IS IT OFTEN MISDIAGNOSED?
A fibromyalgia diagnosis can take years despite the disease being quite easy to identify. “All you need to do is ask the right questions,” Dr Sarembock says.
Unfortunately, a lack of training and knowledge of musculoskeletal diseases in primary care means it’s often misdiagnosed or patients are told the pain is all in their head, Dr Gotlieb says.
Another stumbling block is the fact that fibromyalgia doesn’t show up in tests, for instance blood tests or x-rays, and sufferers don’t have observable signs. “
They don’t have joint swelling, or other easily recognisable physical signs,” Dr van Zyl says. If you suspect you may have fibromyalgia, ask your doctor for a referral to a rheumatologist.
These doctors specialise in musculoskeletal disorders and know how to treat patients with chronic pain.
*This article originally appeared in YOU Magazine in 2015