Living with chronic pain: 'When it's bad, I'm in bed tossing and turning, unable to sleep, until I'm absolutely exhausted'
Pain is insidious. It can be unbearable, yet difficult to explain. Martina Phelan tells Joy Orpen that she is behind a campaign raising awareness about the nature of pain, and the need to be sensitive to those living with it
Pain has been Martina Phelan's unwelcome companion for most of her 36 years. Adding to her distress is the fact that medical authorities struggled to identify the cause of the problems, leaving her in a painful limbo for many years.
Martina, one of five children, grew up in Limerick. She attended the Waterford Institute of Technology, and ended up a "very qualified payroll specialist". But it wasn't all hard graft. When she was 18, she joined the Navy reserves. And even though they mostly honed their maritime skills in modest dinghies, they also experienced the wonders of the open sea in an elegant Navy yacht. "It was pure heaven sailing down to Cork," Martina recalls.
Unfortunately, she had a major asthma attack at the naval base, and that ended her career as a reserve.
This was not the first time Martina had experienced health problems. As a child, she endured constant back pain, which was ascribed to heavy school bags. She also suffered from migraines. Then, when she was 14, her knees suddenly swelled to the size of melons. "The hospital doctors decided the ligaments and muscles around my knee were too short," says Martina. "They wanted to cut them. But then they changed their minds, and sent me for physiotherapy instead."
The problem was eventually resolved, following physiotherapy and consistent exercises. "I seemed to have had a lot of pain as a child," she says. "But what can you do when they tell you your backache is because your bag is too heavy, or your knees are swollen because your ligaments are too short? All you can do is get on with things as best you can."
What Martina couldn't ignore was the persistent pain in her back. But that didn't stop her getting her career up and running.
When she discovered that Limerick offered limited employment opportunities, she went further afield. In 2002, while working in Dublin, a physiotherapist told her there had to be an underlying cause for her ongoing back problems. So Martina had a CT scan and X-rays, and was diagnosed with spina bifida occulta. This occurs when the spine does not form or close properly, before birth. When the spinal cord becomes implicated as well, back pain and other complications may arise.
Finally, she had a diagnosis, but that didn't cure the pain. Soon after, she saw a podiatrist who ascertained that she was also extremely flat footed, that her right hip was twisted in its socket, and that her right leg was shorter than the left. "He made some significant insoles for my shoes, and they worked really well," says Martina.
Unfortunately, there was now an additional problem caused by a long-term bacterial infection, which eventually led to stomach surgery in 2008. And that did not go as well as she had hoped. "After the surgery, my pain was even worse," says Martina, while adding that she felt very low as a consequence.
And that led her to a pain specialist at the Mater Private in Cork, where she regularly undergoes an ingenious procedure called pulsed radiofrequency lesioning of the dorsal root ganglion. Using a local anaesthetic and guided by X-ray screening, special needles are inserted into the base of Martina's spine. Pulsed electrical waves are then applied to the affected nerves. This limits their ability to transmit pain messages to Martina's nervous system.
As this is a non-destructive treatment, the nerves have a tendency to recover, so the procedure has to be repeated two or three times a year. But even so, Martina is immensely grateful for the benefits it does bring. "The nerve pain is gone straight away," she says. "It lasts several months. That kills most of the pain, but not all of it. So I have to take painkillers; I take antidepressants as well, as I've had some pretty down moments since the surgery in 2008."
About a year later, Martina had another MRI scan and X-rays, which resulted in an additional diagnosis of spondylolisthesis, which occurs when a vertebra has moved or slipped forward. She was told that surgery for that particular problem had a 60pc failure rate, while the risks included even more pain and the possibility of ending up in a wheelchair.
She also learned that two of her discs bulge, and have little or no spinal fluid. So she decided to face the fact that her intense discomfort was with her for the foreseeable future.
"I have so many issues," says Martina. "My spine curves into my stomach, while there's another curve at my shoulders. And that's what causes the current chronic pain. When it's bad, I'm in bed all the time, tossing and turning, unable to concentrate, unable to sleep, until I'm absolutely exhausted.
"Sometimes I can't lift anything, and the pain is so bad, I can't even cook, so my mother has to help. And if I go to the pub, I have to be really careful in case I get jostled. Even the vibrations from music can be painful.
"It makes my mother and me angry that my back problems weren't spotted sooner, even though, as a child, I had to be treated at the hospital on numerous occasions. An earlier diagnosis might have lessened the long-term problems."
Orla Spencer, clinical psychologist at Tallaght Hospital, says, "Living with persistent pain can severely impact someone's life."
She adds that because pain is not visible, some people don't empathise properly with those who do suffer from it, and may make inappropriate remarks. "It's important to adopt a non-judgmental approach when dealing with someone with pain," says Orla.
Martina is a tireless supporter of Chronic Pain Ireland, which recently helped launch a campaign called, '10 things NOT to say to someone with chronic pain', which is part of the the 'mypainfeelslike . . .' nationwide campaign. "I attend Chronic Pain Ireland's meetings and find them very useful," she says.
In July of this year, Martina was advised to stop working because of her physical problems; for example, she can't walk or sit for long. But she is determined to resume working at some point in the future.
She is mad about gardening, and can see possibilities for herself in horticulture. "I saw a man at the Chelsea Flower Show and he was gardening in a wheelchair," she explains, while adding that her niece in Galway, and three nephews in Limerick, bring much joy into her life. "I just love reading to them and playing games," she says with a bright smile on her face, the pain forgotten for a moment.
Chronic Pain Ireland, tel: (01) 804-7567. To see the '10 things NOT to say to someone with chronic pain' video, see chronicpain.ie
The 'mypainfeelslike . . .' nationwide campaign supports patients when communicating with healthcare professionals. The online pain questionnaire will help you describe your pain to your doctor, see mypainfeelslike.ie