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Melbourne Leader story, Soula bares soul over pain

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The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain.

If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.

Melbourne Leader Mon 1 Dec

Resident shares story of coping with daily agony following fit ball accident

By Nic Price for the Melbourne Leader

SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.

She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.

Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.

As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.

They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.

“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said.

 I don’t drive or do shopping, vacuuming or cleaning. It’s not understood and it’s difficult for people to understand because you look fine, your pain is completely invisible … If go out for coffee or a barbecue, I will feel the pain the next day or when I get home.

Ms Mantalvanos said she was sharing her experience in the hope that it can improve understanding of chronic pain.

A documentary of her story, The Hurting Strings – An Artist’s Story of Pain, won the ReelHealth International Film Festival Award in October.

Ms Mantalvanos is also taking part in an awareness campaign called Share Your Pain, which aims to educate people about nerve pain.

New research by Kantar Health revealed six in 10 Australians who have neuropathic pain missed work at least once a week.

Pain specialist Dr Nathan Taylor, of Sydney’s North Shore Private Hospital, said nerve pain was often described as burning, stabbing, pins-and-needles, feeling of electric shock, and associated with numbness or skin sensitivity.

Ms Mantalvanos said sharing her story helped her cope. “I want to share it because it helps me make something of the experience. It helps me put the pain somewhere, so it doesn’t just stay pain,” she said.

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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