Coping with chronic pain stress / Finding unexpected comfort tools

[shanewarne121]

Hi everyone,

I’ve been a member of this community for a while, reading through your stories and finding so much comfort in the shared experiences here. Living with chronic pelvic pain and managing something as exhausting as Pudendal Neuralgia takes such a massive toll not just physically, but mentally and emotionally.

Dealing with constant flare-ups, sleep disruption, and the uncertainty of daily life often leaves me looking for various ways to de-stress, distract my mind, or find small moments of peace when things get too heavy. Lately, I've been experimenting with mindfulness tools and alternative ways to find a bit of mental clarity and relaxation.

One thing I recently stumbled across during a sleepless, high-pain night was a tool called Astroma. It features a free astrology chat ai that lets you ask questions about life, personal growth, or general charts without needing to figure out complicated jargon. I found that having an interactive, low-pressure distraction to talk through random thoughts actually helped ease some of the anxiety and restlessness on tough days.

Of course, it's not a medical treatment by any means, but on days when you're stuck resting or feeling isolated, I thought some of you might appreciate a gentle, zero-cost distraction to pass the time and give your mind a break from focusing purely on pain.

Sending strength and healing thoughts to everyone here today. How do you guys usually cope with the mental stress and anxiety on your worst flare-up days? Would love to hear what helps you find peace.

[Violet M]

Hi Shane,

Thanks for sharing your experience. I'm sorry to hear you are still having rough times.

Normally, I try to keep religion out of my discussions here so we don't get off topic, but given your question - what helps us find peace? - I think it is OK for people to respectfully discuss in this topic what helps them get through the tough times.

I remember one day lying in bed during the worst of PNE and looking out the window at the blue sky thinking my life was basically over, but being a Christian, I started praying and then I had a deep feeling of peace, knowing that whatever happened, God has always promised to be with us no matter what we are going through. And He went through one of the most excruciating deaths there is (cricifixion) so He understands the pain we feel. I can't explain everything about suffering, but knowing that He went through something awful so that someday we can live in an eternal paradise gives me more hope and peace than anything else. That's the motivation that drives me to continue providing this website in hopes that people will find relief not only for the few short years we have on this earth, but even more importantly, that people will find an eternal hope. I pray often for everyone who comes to this forum to find healing and hope.

Violet

[eraser]

Mindfulnesses did not work for me, as extreme pain 24/7 felt like a sign of impending doom and no amount of distraction would have ever worked.
However, the knowledge that there was a surgical option enabled me to continue fighting for what I know I needed. I knew that if my situation was to change that I had to be the hero of my own story despite all the obstacles and incompetent doctors that I had to endure along the way.
I take pride in knowing that I am attempting to change the system.

[Violet M]

Mindfulness didn't work for me either, Eraser, although I know people who say it worked for them, so I guess different things work for different people. But I agree with you - the surgical treatment option was the other thing that gave me hope too -- knowing that I still had treatment options to pursue once I had a proper diagnosis. A pelvic floor PT finally figured out what was wrong with me and gave me a diagnosis. Once I had a diagnosis, I went on the old pudendal.info and tipna forums and I knew right away that she had correctly figured out the diagnosis. By reading those forums I discovered there were options available besides pelvic floor PT (which wasn't helping). Being able to talk with other people going through the same problems was really helpful too.

My heart really goes out to people who have tried the surgical route without success, or who have gotten worse after surgery. Unfortunately, there are no perfect medical solutions, which is why I look forward to a better land someday.

Violet