Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.
Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!
Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. (more…)
There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.
I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.
This DVD isn’t just about managing pain, but rather a clear and concise resource for females… It should be put on some International educational agenda. (more…)
Last week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:
I am therapist free
Did I ever think this day would come? Of course I did and I believe that’s why I am here.
I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)
Show and Tell online interviewed me about art and my advocacy for chronic pain and injured workers… thanks guys!
Let us introduce you to Soula Mantavanos…an inspiring artist with a passion for helping others deal with chronic pain. Today we are trying to help her spread the word as far as we can reach to help all those in need…but also, she is an incredible artist with an incredible home…so we thought you might not only like to hear from her but see where she spends most of her time. These pics were photographed by the wonderful Sean Fennessy and produced by Lucy Feagins of The Design Files.
Soula has been forced do deal with crippling pain since her fitball burst and caused her to fall on a concrete floor. She is now dealing with chronic pelvic pain which is more specifically known as Pudendal Neuralgia (PN). Soula is now advocating and working tirelessly to help others through her website.
We sat down with Soula to hear all about it, check out the links she has provided and share where you can! Ohhhh and enjoy her gorgeous home!!
Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain?
“I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37. (more…)
The kindness of the pain world just keeps on delivering… The time and effort specialists take to email and share their resources and offer advice for pelvic pain / Pundendal Neuralgia (PN) is astounding and something that moves me so much. Having the website setup to be able to pass the info on is the ultimate. The chronic pain world is hellish, but like many of life’s screaming contrasts, for all the hellish qualities of pain comes a community that offers warmth, understanding, support, sacrifice, and the utmost kindness.
I can go on but my point is, I’ve found another brilliant pain centre and I want to share it. Quickly. Are you in the Netherlands? I believe you’re a phone call away from changing your pain situation (and participating in a ping pong game after your appointment!). (more…)
Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood.
I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I’m hopeful again and thinking I was in some kind of a flare. I can’t expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I’ve got to expect at some point the body is going to say, ‘hang on love, you’re lifting too much milk!’ (more…)
With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up).
Of course, I’m no pro when it comes to seating, but I’ve learned a lot from my own experience and from listening to the ‘ouch’ in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it’s the stool with adjustable foot rest!)
Although I’ve worn out, thrown out, tried and tested so many more seating aids, I’m showing the ones that have lasted or worked for a while. These are the ones I often resort to when things are getting heated again. (more…)
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)…
I feel I’m exercising my brain when I read an article that sparks more thought and leads me on a hunt for more and more information and the process all results in gold! It might not necessarily be what I was looking for but a lovely surprise nevertheless (and some excellent resources).
I had one of these info-journeys last weekend. It began by reading Imagine: The Science of Creativity in The Saturday’s Age (Melbourne 7th April) by Jonah Lehrerare, and coming across this quote: Sleeping is the height of genius by Kierkegaard. It made me think about another possible cure for my issue (I know, very far-fetched but imagine if my brain could be programmed to make me live/dream all the activities my pudendal nerve won’t let me do by night?! Imagine?!). So I went to my favorite, most trusting online resource, no, not Google, Body In Mind(more…)
Talk to your phone and your computer responds with commands (comma), better still, it types for you (exclamation mark exclamation mark)!! That’s right, I’m lying down now and speaking to my phone and I can see my cursor moving and my words appearing (full stop). Very happy (comma), thank you Dragon Dictate(full stop).
(Category colon Learn Professional Resources Publish)
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.