Talk to me about meditation and chronic pain (please!)

[Hooperdooper]

I have NC as what I have is a bit weird and probably would out me.

I’ve been struggling horribly for the past year with awful nerve pain, mainly around my pelvis but also up and down my legs and my feet as well. Basically huge amounts of pain from the waist down, including internal pelvic pain. I’m on loads of medication and seeing a consultant but they don’t seem to be able to work out what’s wrong. There was some talk of pudendal neuralgia but that seems to now be off the table. I don’t have a diagnosis at present.

What I’d like to know more about is meditation and apps. I’ve done the Headspace Pain Management pack and do use meditation off YouTube almost daily to help relax. I just keep hearing wonder stories about meditation and mindfulness pretty much curing chronic pain so I was wondering if I’m doing something wrong!

I don’t get any pain relief from meditation, the best I can ever manage is relaxation. It does help me loosen the muscle tension but the effects don’t last.

Does anyone have any tips or recommendations? I wondered about trying the Curable app but just unsure. Sorry this has turned into a bit of a ramble, all help gratefully received if you’ve got this far

Hi Hooperdooper

I have similar chronic pain and it is exhausting and grinding and always there.

Pain relief is sporadic at best, hopefully, you are under the pain management team?

It is unlikely you are doing something wrong, these apps are often designed to generally relax your body which helps wonderfully with tension pains. The relaxation is the end result, a period of time focused on other things which temporarily helps.

There is nothing wrong with the apps and having time to relax is great, you could try it in a hot bath if that helps you.

But, it is not going to cure the pain, the pain is an evil beast with a physiological rather than psychological cause. Meditation and mindfulness are wonderful for your mental health though, if you like them.

Do keep on at the pain team and keep a pain diary if you don't already. Unfortunately, pain is one of those things that so many medical professionals, in my experience, either seem to not believe or don't adequately manage.

I’m not under the pain team at the moment. I’ve requested a transfer to somewhere more local as I was under the pain team at UCLH and became very disheartened with it all after 4 injections and no results apart from being left in worse pain. They also had a shitty attitude and weren’t interested in even discussing a plan b.

I do like the relaxation element of meditation but I was hoping for more. I can’t manage a bath unfortunately, sitting is very painful and the position in a bath is one of my worst.

I’m just so frustrated and down about it at the moment. I’ve had to give up my job because I couldn’t manage even on hugely reduced hours. I can’t drive and I really struggle to look after my toddler DS so nearly always have to have help with him. Got my PIP assessment on Wednesday and I feel so bloody stressed about it

I might give Curable a go. Urgh I just wish there was an end in sight! I hope you manage to find some relief too it’s awful to live with

I totally understand, it does seem to be a postcode lottery when it comes to treatment and support.

Do you have any support for your mental health at all?

The hardest thing for me has been to reframe my expectations of what I 'should' be able to do and learn to accept what I can't change.

I use the spoon theory (look on TED talks) and it has helped me manage more dealing with the mental health aspect to chronic pain.

This is also quite a good read.

Karmin no support for mental health. I completely understand though you saying about reframing expectations - I’m finding that very difficult and I’m frustrated at feeling so limited. I’ve gone from being an active mum who walked miles and ran, to someone who more often than not is lying on the floor with an ice pack. I will have a look at the link thank you

Similar position- I’ve read loads on nerve pain and the psycho genic aspect of nerve pain which has really helped de-escalate the heightened feelings when the pain becomes mentally unbearable. 🌹

I have very similar pain, began in upper body and arms but recently has spread to include hips and legs. Currently sat in the bathroom at work taking a five minute breather so I didn't just start screaming at my desk.

To be honest, meditation in the traditional sense hasn't really helped me much, I saw a pain psychologist through my pain clinic who was big on trying to 'visualise the pain' and 'put it in a box and leave it outside'. It didn't do much for me, when your body is screaming at you and there's no discernible cause trying to pretend it isn't happening just wasn't something my brain could cope with.

What has helped is a series of painkillers, cocodamol taken every six hours without fail (I set an alarm through the night) and naproxen morning and evening. A muscle relaxant (clonazepam), lidocaine patches and an antidepressant which I was on anyway but it does help me stay more positive. Some people find a neuropathic pain treatment like amitriptyline or gapapentin work well for them but they don't work for me. Hot bath every evening, at least an hour, usually two, with magnesium salts. TENS machine regularly. I would have regular massages if I could afford them, otherwise a family member may be willing to volunteer for a bribe or two. It takes some time to work out how tough to be, I need a lot of pressure on trigger points but any pulling or rubbing of the skin causes burning pain. Pacing also helps while waiting for meds to kick in rather than sitting feeling trapped by the pain.

(Final tip, I always find on the nights when I can't cope and struggling a lot, a good orgasm can relax me enough to get to sleep while the painkillers kick in. A sort of meditation, maybe?)

Thanks both

I’m on slow release morphine topped up with oramorph during the day, duloxetine (anti-D) and Gabapentin. This cocktail allows me to just about function. I can’t do baths as the position is awful for me and unfortunately my fanjo feels like broken glass so organs are well off the table!

I’m going to have a look at a couple of books recommended in the article linked by Karmin

Organs?? Orgasms!!

Hi I know this is an.old thread but wondering if anyone is in a current position with chronic pain and using curable style app - I have just started with it

Bump?

@doadeer, did you have any luck with Curable? I have just started it and interested in any experiences.

I just replied on another thread about Curable being fantastic. It really is. It's worth trying and giving it your all in terms of engaging with the content and trying all the exercises. It gave me my life back. I've seen lots of friends improving using it too.

Yes I did. Really helped me. I was on max dose coedine and how I take nothing. I get little flares but nothing compared to how it was. It has been life changing for me

Thanks both, that’s great to know. I’m going to give it a proper try.