I am an artist and creative director.
For eight years chronic pain has consumed mine and my husband's life.
BUT, I am now returning to my creativity with the assistance of modern day therapies. I'm using expression as a catharsis and coping mechanism and as a pathway for the restoration of my 'self'.
It all started with emails. I bet most medical professionals felt alarmed as email communication began with patients.
Wasn’t the existing scenario suitable enough? Call the receptionist – make several attempts to get through, rattle off suitable dates, wait for that day to come around, get to the waiting room, sit, sit and then finally release that conversation that’s been swirling in your head… if that’s even possible in the allocated 15 minutes.
I’m sure some medical professionals still appreciate and stick by this scenario. I know quite a few that do.
…When Stephen Waxman was a student at the Albert Einstein College of Medicine in the early 1970s, he became interested in pain—how people feel it, how the body transmits it, and how, as a future neurologist, he could learn to control it. Later in his career, after his father was in the final stages of agonizing diabetic neuropathy, he became obsessed with helping patients like his dad, who could find no relief from their pain. “We simply had to do better,” he says. Continue Reading
You might recall me plugging the Pain Down There DVD – an extensive resource for women created by Robert Echenberg, Karen Liberi, Alexandra Milspaw, and Stephanie Yeager.
Now the team have taken this a step further, turning the DVD into an online, supported program.
The idea is to offer support and pain management in small groups of 10 – 15 women who start the program at the same time. The video content is released to them online and they also get to meet as a group online with Stephanie as their personal health coach. Individually they have the option to meet with the doctor and PT – all via video conferencing.
Can virtual reality really soothe pain? Jo Marchant meets the doctors who say yes, and who hope this is a solution for the country consuming 80 per cent of the world’s opioid supply: the United States of America.
“It’s like a crawly feeling inside,” says Judy*. “You get hot, then chilled, and you feel like you want to run away.” The 57-year-old has short dark-grey hair and a haunted expression. She’s breathless and sits with her right leg balanced up on her walking stick, rocking it back and forth as she speaks.
Judy explains that she suffers from constant, debilitating pain: arthritis, back problems, fibromyalgia and daily migraines. She was a manager at a major electronics company until 2008, but can no longer work. She often hurts too much even to make it out of bed. Continue Reading
I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.
Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!
Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.
(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)
Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.
When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.
It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?
But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.
Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.
I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. Continue Reading
My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.
Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.
(Excerpt from mamamia.com.au. Story by Caitlin Bishop)
Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.
“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia.
Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes.
“I had a full life, creating art, working as a graphic designer, travelling overseas once a year. I had no limits. Now, my life is 30 per cent of that,” she said. It’s been 10 years since the fit ball burst.
Soula went to the doctor, was given pain medication and told to come back in eight weeks if the pain wasn’t reduced. Yet it worsened.
“Nerve pain, of course, doesn’t show on X-Rays,” she said. “It took me four and a half years to receive an accurate diagnosis. The pain would come and go with no routine. I would be fantastic one minute; the next I was spasming, burning, couldn’t function.”
Soula damaged the way her pudendal nerve, which stems from the sacrum and is responsible for motor supply to the pelvic muscles, signals the brain. When she sits, drives, lifts something, or moves suddenly, the nerve creates pain signals for no reason.
“I tried Lyrica (anti-siezure medication), nerve inhibitors, Tramadol (an opioid),” Soula said. She couldn’t work. She tried lying on her stomach on the studio floor, unable complete more than 15 minutes of work at one time.
“I took anti-depressants but these lowered my mood overall. My pain levels shifted constantly, and my GP told me to increase the dose of pain medication until it felt better.”
Soula became dependent. “I shrunk as a person. The medication fogged my mind. I couldn’t cross the road. I had to activate spell check on my phone. I didn’t have the ability to think properly any more,” she said.
“The most horrific part of this was the breathing. I would wake up in the middle of the night and realise I hadn’t taken a breath in ages. I would take a huge breath and start to panic.”
Have you all been holding your breath as I have the last couple of months? Well, you can breath out and feel happy for me – I got paid!
The financial ease is beyond documentation even though it falls far short of what I’m due (a most usual scenario with injured workers).
The fear and doubt that the compensation won’t continue will be ever-present. Being treated repulsively for years can never been forgotten – it’s a kind of irreversible trauma.
I will forever doubt these monsters. Trust was never incorporated into this relationship.
So am I settled, is it done, and am I feeling ecstatic?
Nope. There’s grief and anger to get through now. Grief for the life we lost due to the insurer’s dirty tactics. Anger for having to unnecessarily begin a whole new life miles away from everyone and everything we love. Continue Reading
Most simply put PN is Carpal Tunnel in the pelvis/buttocks.
Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated 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.