Living with Pain

[Estellemac]

At a Zoom meeting this week someone asked if anyone had seen the BBC Iplayer programme on Living with Pain. It was also on BBC news this week with a short intro. I have just watched it. If your new to PMRGCA, struggling to get off Pred due to Adrenal Insufficieny or have flare ups have a look I found it very interesting and the young person was truly inspirational . The people on there had other medical conditions but all we’re living with chronic pain and trying to manage it

bbc.co.uk/iplayer/episode/m...

[Pangolin43]

This is really interesting and thought provoking. Thank you for posting 😀

[tangocharlie]

I saw a brief clip from this on the local news and they had a doctor from a Yorkshire pain-management clinic who mentioned things like CBT and ACT that can help, which I can believe, as Mindfulness courses have really helped me in the past. One of the main lessons was that you can't do much about the pain itself but you can control how you react to it, which does affect pain levels. It's good to acknowledge things are tough and even have a little cry sometimes, but if you let your thoughts get control to often like saying 'why me?' or 'I'm fed up of all this' etc etc you pile secondary suffering on top of primary suffering. Acceptance doesn't mean giving in or giving up and accepting nothing can be done but acknowledging how things are right now. My heart goes out to anyone suffering daily pain.

Interesting watching this that like us on steroids, people who use opioids have to work out their own ways of tapering doses as doctors don't know the reality and practicalities. I didn't know you coud get painkiller patches - I've never been offered them when I've been presecribed things like codeine and tramadol in the past. It also mentions the importance of support groups which is so true.

[PMRpro Ambassador in reply to tangocharlie]

The rehab rheumy here is very keen on lignocaine stick on patches - pretty good for muscle pain.

[Telian in reply to PMRpro]

My OH has had morphine patches in the past.

[PMRCanada in reply to tangocharlie]

Thank you for acknowledging and describing ACT tangocharlie. I believe it is very relevant for those who have conditions like PMR/GCA (and certainly others who are struggling with physical and mental health challenges). You’ve described the approach beautifully.

I too have tried to adopt a mindset of acceptance of the here and now to ward off increasingly catastrophic thoughts that this will never end and I won’t be able to cope. I can get stuck in an internal dialogue of “secondary suffering” which results in me feeling worse, hopeless, and lacking any control. If I venture into that mindset my stress and depressed mood increases. Avoiding my pain and woes does not work well either.

I also agree with the importance of support groups. Professionally I’ve developed and delivered dozens of innovative support groups to meet the identified needs of its participants. Personally they have helped me SO much that I’ve developed a monthly meeting for us in Ontario/Canada with a few other founding members. There’s nothing like the healing that comes from having your struggles witnessed and understood by peers who “get it”, not to mention how it reduces isolation (like this forum).

I’ve copied some additional ACT information below for the benefit of our forum, as this approach may be a bit confusing, and contrary to our understanding and approach to the struggles we encounter. As Meghan O’Rourke mentions in her book “The Invisible Kingdom”…..”To the degree that my quest had an object, that object turned out to be learning to live with uncertainty and incapacity”

ACT asks, “What if you could accept and allow yourself to feel what you feel, even if it’s negative?”

ACT is

“a unique empirically based psychological intervention that uses acceptance and mindfulness strategies, together with commitment and behavior change strategies, to increase psychological flexibility.”

To put it in less clinical terms, Dr. Russell Harris (2011) has defined ACT as “a mindfulness-based behavioral therapy that challenges the ground rules of most Western psychology.” Its unique goal is to help patients create a rich and meaningful life and develop mindfulness skills alongside the existence of pain and suffering.

[Tiredofpmr555]

I would have liked to have watched that but you can only play it in the U,K