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Back on the treatment trail

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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…

We recognise that your pain affects your ability to do the things that make you who you are. We manage the impact that pain has on your world.
– Nick Christelis

Thinking about taking on treatment is difficult. Yes, even when you need it because you know you’ll need a bundle of energy and mind stamina to digest the information. You don’t have much of that when you have chronic pain.

[Rant]
Most days, you don’t have any stamina at all. Have you ever forgotten someone’s name while you were speaking? Just stay with that thought, and now try to imagine reading information about your health at the same time – it aint gunna sink in! You can’t even do these tasks easily when you have a ‘low pain’ day. It’s traumatic and the LAST thing you want to do, yes, even knowing your health depends on it, is search for a solution to the nightmare.
[Rant over]

To face treatment you have to be prepared for some (or all) of the following:

  • loads of decision-making
  • many appointments
  • more appointments
  • more decisions
  • new medication trials
  • adjustment to medication trials
  • possible operative procedures
  • weeks for medication adjustment
  • bills, many, many many
  • paperwork
  • a lot of rest
  • possible more pain than usual

And all the while, you are in pain doing this and most likely, you’ll need help to manage it all. That’s if you’re lucky! Thankfully, I am.

So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you’re in pain thinking ‘if this friend tells me I need to meet someone and sustain a new friendship, I’m going to punch them‘ – but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago – like eight years ago for me).

But let me move on, we’ve met now, and I’ve had my first appointment with VicPain’s Dr Nick Christelis. What gave me the confidence to make an appointment were the following words, words I have never heard before, (I’ll get the worst tip out-of-the-way first!):

  • A chronic pain issue is like any other chronic issue, you never stop searching for treatment
  • We are constantly learning and so there are constantly new treatment options
  • Why is it that no one has ever persisted to find out why you can’t sit in that chair?
  • Who’s your team?
  • You need to be ‘set up’ for your good days and your bad days. You need long-term pain relief, short-term pain relief, pain relief for flares
  • You need psychological support to handle the ‘stressors’ in life
  • You need to have someone to call so you never feel you’re managing alone
  • You need to feel supported, etc

It went on and on… and the finale was a whole bunch of hope. Huge hope, especially after the two days it took me to get this thought out of my head: ‘this. is. never. gong. to. end’.

And now, just a week later, and on my new meds experiencing great pain relief with no side effects, I have only one more question:

Why have I not found this kind of treatment, personal and medical, before?

VicpainTeam

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  • Lee

    I’m going to have pudendal nerve blocks this week. Has anyone had success with these? I have had pelvic nerve pain for 4 years and am at the point of no return. I just can’t stand it anymore!
    I would be glad of ant input on this please
    Lee

    • Soula

      Keep reading through the blog Lee. You’ll find reference to all my treatments, including the 3 nerve blocks I had on the site. Good luck, I hope you find great relief.

      • Lee

        Ho Soula
        I had nerve blocks last Friday and they seemed to work initially but by the end of the day the local anaesthetic was wearing off and pain started to return. Now one week later I am worse off. I’m ok if I stay in bed but as soon as I sit for 10 mins with my special cushion I’m in a lot of pain and have to lay down again.
        I understand the needles can overstimulate the nerves and they have to calm down before pain relief kicks in. Was that your experience ? How long can it last?
        I live in regional Queensland and have go to Brisbane for specialists which is a 5 hour road trip by the time I take breaks.even then it’s hard to get appointments.
        I live alone, though I have daughter close by who works full time and has her family to look after. I feel very alone with my pain and unable to cope . I don’t know what to do next. I have an appointment with my GP on Monday to try to sort out my myriads of tablets.
        Any suggestions ?
        Kind regards
        Lee

        • soula

          Don’t lose heart Lee. My block relief didn’t kick in until 5-7 weeks. And they all lasted various times, each one lasting longer. I don’t get flares anymore but I’m still seeking new treatment for the other pains. So much to deal with. It is an isolating condition. Socila media is great but we do need to step out of our contained spaces. Are you on FB? If you are find me there and we’ll see if we can find treaters near you. Can you email me your suburb and I’ll ask a contact who lives in Queensland? soula@pudendalnerve.com.au
          Stay strong… search for one thing a day that makes you happy and do it every day. I know, it’s difficult!

  • Lisa

    I’m going to take a wild guess and guess the new pain med is methadone? Maybe not, but it does help me about 40%.

    • Soula

      Gabapentin… sadly though, it’s fizzling out for me. I sloped terribly and had awful muscle fatigue in my arms and upper body a week ago. We’re moving to Plan B. I’m confident, @vicpain have got my back here…

      • Lisa

        Darn! I was so hoping you have found something. I’m surprised you hadn’t tried gabapentin sooner; here in the US it’s the first thing the doctors suggest, along with pelvic floor physical therapy. However, it did take me a long time to give in and say yes to trying the gabapentin, just because I had heard from an acquaintance with pelvic pain that it only took the edge off the pain and caused a lot of cognitive side effects. Well, I finally tried gabapentin starting a few months ago, and it hasn’t done a thing for me (that I notice anyway), and I even went up to 2700mg, so I feel I gave it a fair chance. I don’t think it caused me cognitive side effects, and didn’t cause me fatigue that I’d read about, but it just didn’t provide any benefit. I do have to say that methadone (in tablet form) has been a lifesaver. I take a very small dose (about 5mg, occasionally 10mg if I know I will have to sit for a while), and it reduces my nerve pain by about 50%. And as long as I keep the dose small like that, it doesn’t cause any side effects or loopy/drugged feeling. I don’t know if the doctors ever prescribe that in Australia, though. If they do, I would definitely give it a chance (start slow).

  • Kathryn Malic

    I loved reading your positive experience, let’s applaud the practitioners who get it right!

  • Arlene Jones

    I am not sure I understand. Are you saying you found a group of doctors who can help us!?
    Who are they? Where are they from?
    Thanks for your input and constant determination to find answers! <3

    • Soula

      Arlene I believe Vicpain would be one of our best shots. Each of us have different issues and there’s never any telling that something that works for one person will work for another.

      I was just impressed at the ‘team’ approach here, something I’ve not come across in 8.5 years. Also the empathy, understanding, communication and the information made available to me was astounding. I came away from the appointment feeling I had many options for relief to explore, not just one and that there would be more in the future! I feel that I’m in the best hands, that I will become the best I can. I think it was also the consult, much more casual, I didn’t feel the divide between the professional/practitioner that I’ve mostly felt elsewhere. That was my experience and I’m sure there are other teams out there (I believe Pain Matrix have a similar approach in Geelong). I’ve heard from so many patients down there.
      And as for your question, ‘where are they from?’, it feels like ‘this lot’ come from the same planet we come from!

    • Frances

      I am very happy with the care I am receiving from Precision Spinal in Melbourne. Great team of doctors. They have a good web site if you google them.

  • Frances

    It took me a long time to accept the “chronic pain” label that everyone was talking about. I did not hear anything a doctor said once they used the “chronic” word. There is no way to move forward until you have acceptance. My anger at the situation I was in also was a problem. Some things (emotions) are very hard to self control. Thinking this is now my lot in life is very hard to accept and leads to the continual search for a cure.

    • soula

      It’s so true Frances. I always say you have to ‘friend’ the pain as this beast only bites you back 50 times harder if you go against it. We have no choice but to work with it. Here’s hoping one of us comes up with a solution soon…

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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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