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Resources for Treating Chronic Pain by the Victoria Pain Specialists (Vicpain) …MY pain team!

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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. Continue Reading

Adventures of a stim controller

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Ever wondered what a stim’s controller’s day looks like?

Firstly, let me clarify that I’m talking about my Boston Scientific Sacral Stimulation Implant controller (BSSSIC), not my St. Jude’s Peripheral Stimulation Implant controller (SJPSIC otherwise known as, the one that saved my life).

I’m experimenting at this 7 month post implant stage in order to figure out whether I need the SJPSIC by not using it at all. Two devices in one backside cheek is quite tricky at times. Someone without a chronic health issue would probably complain endlessly as this situation does have a few uncomfortable limitations. For someone with a chronic health issue though, that side of things, is a piece of cake in comparison – almost welcoming when you think of the benefits that come with it.

And one more thing, before I go on – no! I won’t turn both on for your entertainment purposes.

A controller has a fair job to do – it’s committed 24/7. Continue Reading

Time to exercise – but how?

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It took six full months for me to feel I was ready to have my follow up appointment with Dr Nick Christelis after my Sacral Stimulation Implant.

I got a few ticks at the appointment:

  • Device incision healed
  • Leads incision healed
  • Both areas feeling cushy and a bit more robust
  • Honeymoon period helped with setting up the new life
  • I’ve learned a few of my new limits

I also got a few concerned looks expressing the following:

  • I’m more fatigued
  • I’m sad
  • I’m feeling like I can’t get up in the morning
  • My mood is really low
  • I feel I’m slipping
  • Sleep is a bit more disrupted than usual
  • I’m waking up anxious, breathless

We had a good chat. We agreed alot – especially about the need to find a way for me to exercise. I’m resting less now – no longer napping in the afternoon (a great thing!), so that means I’m moving more. But my heart rate isn’t really going up. It needs to.

In the nine years of chronic pain, I’ve tried a squillion routines and tricks in the attempt of finding some way of exercising without painful consequences.

Anything I attempt seems to translate as ‘too much pressure’ on my pelvis.

To understand what I mean, just imagine the feeling in your muscles after you’ve worked out at the gym. The muscles scream the day after (for various reasons). And the day after that – even more so.

But in that normal circumstance, the pain goes. With chronic pain it doesn’t go, in fact it manifests.

With PN there’s a further impact – signals and functions are affected and I get pretty uncomfortable. One thing leads to another and if I don’t listen to the signals, before I know it, I’m in a fire ball.

I’ve learned to listen (had a few nerve blocks, sat in loads of cold running water) and thankfully the fire balls don’t happen anymore. But other uncomfortable things still do happen – I just have to find another way.

This is what I’ve tried:

  • Walking in various amounts, strides, shoes, places, times and tracks
  • Yoga (which I sometimes practice but can’t sustain regularly)
  • Stretching (forget that!)
  • Various slow/resistance movements
  • Hydro therapy
  • Clinical Pilates
  • Meditation (not exactly heart rate lifting)
  • Dancing

Not only is none of the above possible but even if I could partake in any of the above (in my butterfly way), I’m hardly going to get my heart rate up enough. Continue Reading

Who am I going to be – Soula ‘a’, ‘b’ or ‘c’?

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_Sacral_stim

My new stim’s changed everything.

I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?

In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.

We’re trying to make me the best I can be so we can be… someway, somehow.

Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.

Post op

After living with my sacral stim for six months, I can confirm the following: Continue Reading

Retrainpain.org

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It’s finally filtering through my brain: It’s going to be VERY hard work most days and it’s up to me to keep my butt in gear and stay on the treatment and management trail.

You’ll all be getting sick of reading my badger about this, but the research is out. Patient experiences have been in the making (for decades now), and the biggest sign that the hard work is cut out for people with chronic pain comes from the many who are now drug dependent with either increasing levels of pain or who sadly have lost their lives – not from the medication – but from the battle.

I get sick of filtering through paragraphs and words and med talk that I don’t quite understand (not to mention the pain levels soar for some peculiar reason) and as an artist, I still find it really difficult to present my pain experience to my readers, family and friends in a simple form.

Continue Reading

Bridge for Pelvic Pain Presents: 1st Annual Pelvic Pain Seminar

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Full agenda and topics available at www.bridgeforpelvicpain.org

Colorado Springs, CO, United States

This seminar will be an immersion in learning about chronic pelvic pain from diagnosis and treatment to the patient perspective encompassing a mind, body and spirit connection. In this full day event attendees will learn about chronic pelvic pain, integrative treatments and modalities from doctors, physical therapists, counselors, health and wellness experts and patient advocates. While the seminar is geared toward doctors, PTs, integrative healthcare providers and medical students, the information and presentations will also be of value to patients,their significant others and caregivers.
Keynote Presenters: Continue Reading

Help me keep this site going – annual subscriptions $3

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This chronic pain advocate could do with a little help maintaining her website.

Your $3 per year makes a huge difference and shows me you appreciate what I do.

If you’re a professional who’s given me information to add to this site, that information will remain FREE but my personal content and WorkCover related posts will require subscription.

Support my advocacy for chronic pain and injured workers – SUBSCRIBE

Drug dependency lessons from Pharma ads and my two mothers

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Carrying Dog

I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.

It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.

It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.

Back to the TV.

Continue Reading

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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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