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Back on the treatment trail

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VicpainHomeScreen

Maybe I should have titled this post, ‘Back on Pain’s roller coaster‘? But then I’d have to explain my position – which would it be? Up or down? Or is this another case of in the middle – managing?

I have many descriptions for my health status and they are constantly revolving around in my head. That’s because I don’t know where I ever stand with this chronic pain. And there seems to be no one else who knows where I (or you!) stand either. So damn frustrating.

But last year, I got fortunate. Someone planted a seed… (more…)

Injured workers rising above

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Bags Of Love

(By Rosemary McKenzie-Ferguson)

Bags of Love Op Shop will open on the 31st July 2015

It has taken a lot longer than any of us at the Centre would have liked- however after many tears and a lot of frustration and loads of laughter and an rather risqué fashion parade the Bags of Love Op Shop will open on the 31st July 2015 .

It is yet another first in the wonderful world of workers compensation as the Bags of Love Op Shop is run completely by injured workers for the benefit of injured workers as each of them rebuild their lives in ways that has never been seen or done before.

“Bags of Love” aim to provide basic food supplies as often as is possible to ease the burden on the injured worker and the injured worker families.

There won’t be any speeches, and there won’t be any ribbons cut and the Australian stock market won’t have a sudden movement to indicate the importance of the opening of the OP Shop. (more…)

Theo, and his ‘carer’s’ perspective

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Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. (more…)

Next stop: Traditional Chinese Medicine with Raffaele Vavala

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Acupuncture6Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of it’ until about a year ago my onion was just too big!  But I also believe some practitioners do have more of a gift than others and Raffaele is gifted!

The consultation methods make great sense to me. My scans have been considered, but my tongue, palms and pulses on both wrists do all the pain and story telling. These body parts describe a system that is quite debilitated after dealing with the years of Chronic Pain, an issue Raffaele understands in-depth. So when I speak of sounds hurting, activity accumulating into a flare up fire-ball, fluid retention, my legs unable to move with extreme heat conditions, the desperation for Western intervention in the form of an implant and nerve blocks, my exhaustion that arrives with the pain and ‘protects me’ by encouraging me to sleep, the inability to focus, reach out and ‘just move that thing’ or carry out a simple task, the ability to create seeming too exhausting, Raffaele understands… ALL OF IT.  He reminds me of my diagnosing physio, and for once I’m the one staring in disbelief at their look of complete understanding for me (when other practitioners screwed up their faces or frowned at my statements). (more…)

Health Organization for Pudendal Education (HOPE)

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HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.

HOPEBracelets

HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE).  If you have come to this website it is probably because you are in pain or you know someone who is in pain.  Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back.

Visit the website: www.pudendalhope.org or sign up to the forum

BUY The Big Issue

Author:
Strength in Numbers

Strength in NumbersI was on a tram with Theo last Friday, we were heading in for a weekend stay to celebrate our anniversary. Although sardined between a few people and someone in a motorised wheelchair my thoughts were on my new self and how I was going to celebrate: sit, eat, walk, up, down, sit, sit… I even planned my pacing and took an old handbag (haven’t held one for years!). My thoughts were interrupted, I could hear a phone ringing and someone muffling something, oh hang on… it was the disabled person in the wheelchair.

“My phone’s ringing… can someone get my phone, that’s my phone…”.  I finally caught the slightly slurring speech and started looking for the phone, asking for directions but all the same trying not to impose (bit tricky looking under someone’s arm!) Yep, I was uncomfortable. But I found the phone.

“Can you check who called please?” Of course I was going to check, that was an easy bit! When I popped the phone open, I had to report, “You have 64 messages” to which Theo, myself and this gorgeous person burst out laughing (and the one or two people who didn’t have their heads stuck in technology). I checked the last number and reported there was no number left.

“I’ve got to get to work, it might have been work… I have to get to Swanson Street… I sell The Big Issue”. Yes, you read right… and to top it off I was kindly informed, in just a few stops, that I could buy a calendar too! I couldn’t help myself, I asked, “Are you trying to sell me something on the tram?” We all laughed.

I stepped off the tram, obviously we bought The Big Issue, liked it on FB and on Twitter, but I also made a good few notes to myself… here’s one of them;

“BUY THE BIG ISSUE”

Australia’s first & only street paper…

The Big Issue, is a high-quality, general interest fortnightly publication that has a readership of more than 180, 000 and features arts and entertainment, current affairs, lifestyle, personal experiences and its own particular brand of irreverence…

womens.thebigissue.org.au/
thebigissue.org.au/ 

Chronic Pain Info group on Facebook

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Chronic Pain Info facebook page

Chronic Pain Info is a Facebook group/page. A place to come and learn, share, vent and meet other likeminded individuals who share similar health conditions and concerns.

This is a post from one member (Rachata Brown) from the “recent posts from others” area of the site…

How to understand us… people who are dealing with the pain.
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. (more…)

Italian lifestyle, perfecto for Pudendal Neuralgia

Author:
Roman style Anti burst fitball (Image: Now this is what I would call an anti-burst fitball!)

I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.

Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.

Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.

So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.

So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.

I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).

Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting. (more…)

To block or not to block…

Author:

Healing at Boboli Gardens (Porcelain Museum) FlorenceBlock!!! Absolutely, completely, totally but only if you know where…

I have to stress this post completely relates to my condition and my personal issue with Pudendal Neuralgia. I also have to state that while I document my treatments and their effects it is difficult to know whether the effects will last. That also explains why my post is written so much later than my first nerve block (Dec 2011) and will end with ‘stay tuned’.

December 7, 2011

If you’ve been following my story then you’ll know by 2011, four years post accident, I had discovered, what I’m quite sure is, the second main culprit of my injury (the first being a nasty pelvic ligament), the Pudendal Nerve. A sequence of events found me in Dr Peter Courtney’s hands who suggested we block this nerve (bilaterally) and also inject both Sacro-Illiac (SI) joints with some cortisone as they were quite bulgy, especially on the opposite side of my injury (overworked poor darling!).

Nerve blocks affect us differently but the trickiest part about the Pudendal Nerve block is that it is quite painful and ideally requires a full anaesthetic which means the blocks must be a minimum of 12 weeks apart. So if my nerve block didn’t give me relief it either meant we missed the spot (hardly unlikely in my case) or that this treatment wasn’t going to work for me. I didn’t get 12 weeks of complete relief but certainly it reduced my pain and I had many moments of total relief and some random full days too. As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly.

The main aims for a nerve block are pain relief, diagnosis and obviously a cure. Cure happens, research tells us, if the block gives long-term relief and the nerve relearns how to behave during that time (or as I prefer to believe finally gets its sedative, has a long rest and recovers).

I feel quite lucky to be tuned in to my body and able to explain how I’m feeling and what pain I have and where. During this first block I noticed the rectal branch of the nerve was not affected so sitting back, completely on my behind with my back to a chair (not supporting my upper body on a table or my hands) would trigger the pain immediately. I’d feel a heat begin, a zinging then eventually I’d have the flare up. I explained this detail to Dr Courtney and it gave us a huge lead for my second nerve block… (more…)

The Princess in the Tower

Author:
The Princess in the Tower website

Excerpt from The Princess in The Tower website

This website is dedicated to increasing awareness of Complex Regional Pain Syndrome, or CRPS, formerly known as Reflex Sympathetic Dystrophy or RSD, particularly long-term CRPS/RSD, which is so rarely spoken of. Most websites focus on RSD of 3 to 9-12 months that is still treatable with hope of remission. Long-term RSD is where the patient has had the condition for over that time frame, sometimes as long as decades have passed. While this is one focus, we hope to help anyone with chronic pain.

We also provide healing support for fibromyalgia patients at the Princess in the Tower. Our aim is to keep sharing healing and chronic pain management tips, while maintaining a happier outlook. Check back often to learn about new contributions to our site. If you have any questions or comments, make sure to get in touch through the Contact Us section of the site. We’re here to help, bring comfort and healing, even if it’s healing of the spirit, we hope you enjoy your stay.

The website is being updated every week so check back often; there will also be a chronic pain blog on the site’s completion and interviews with experts in everything from chronic pain management to cognitive behavioural therapy (CBT)…

Read more on the website

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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 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.

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