Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

Had shit day yesterday just on borderline of can’t cope without meds but feel like have have days in pain diary where I can say look managed without even though awful. Or they have me down as “addict” before you know it.

Thankfully for some unknown reason it’s been better today it’s just so hit and miss. So two days no Codeine am I climbing walls? Of course not. Had scan through for next week, had some private bloods that show almost boarder line liver inflation. But with NHS they tend to ignore until it’s in danger red zone and can’t authorise anything before. Who knows what auto immune thing could be going on, still think wheat is possibility but seems only test is having it for every meal for 3months. Bloody barbaric so that’s never going happen.

Wish hard places could send us wrecks to get support rather than been sucked in and spat out by NHS with your fine!

Having a hellish night. I'm still burning. I've changed into a nightdress so hopefully that'll make it a bit more bearable.

I'm in agony today. Proper agony. Everything I do I painful.

Hope everyone is coping. Apologies for not being around but I’ve been so bloody miserable that I’ve not wanted to inflict it on anyone. Even apologised to the doc on Monday for being miserable!

@Gilead don't worry about being miserable! We're all bloody miserable! It's what chronic pain does to you.

@Gilead hope you're feeling a bit better now ❤️ don't worry about feeling miserable. It's totally natural 😘

I'm having a hellish evening with my pain. I'm staying at my nan's house at the moment, and I'm trying to get some sleep. But my body is just feeling so hot, and I'm really achey and uncomfortable.

[quote HerRoyalHappiness]@Gilead don't worry about being miserable! We're all bloody miserable! It's what chronic pain does to you.[/quote]
@HerRoyalHappiness totally agree with this ❤️

Argh I'm in so much pain today can barely move my left arm because of it.

@Gilead

Hope everyone is coping. Apologies for not being around but I’ve been so bloody miserable that I’ve not wanted to inflict it on anyone. Even apologised to the doc on Monday for being miserable!

Sending hugs, lovely. I feel so shit battling EDS, Osteoarthritis and food allergies plus Menopause and Anaemia. Family and friends seem to be so worn down about it all. Trying to hide my pain and miserable self from everyone. If only we could hide it from ourselves x

I'm feeling a bit fed up too. Had two falls this weekend (yesterday and today) and managed to badly hurt my hip.

Sending lots of love to you all ❤️

Good News
I have managed to successfully wean myself completely off the Amitriptyline, following my consultant orders. He said as I already have trouble breathing at night (I use a CPAP machine) that I shouldn't be on Amitriptyline as it further supresses my breathing! But the GP but me on it before I got to the consultant.

Bad News
My evening/over night nerve pain is a lot worse without the Amitriptyline and I keep waking up in the early hours too really uncomfortable.

Unsure News
The consultant wrote to the GP and said the GP was to prescribe a different medication starting with D I think, if I needed it. But I am on so many other medications I just don't want to start another one.

So any advice on getting more sleep (without meds), would be really welcome

@Worrysaboutalot

Good news about the Amitriptyline. It's bloody horrible stuff and dished out too easily. I was reticent to take it at first, then started taking it, then ditched it. Hope you get something to help the nerve pain.

I'm going to try and post a link to the breathing / meditation I use for sleep / pain for everyone who may find it helpful. It was part of a trial to assess its effectiveness with people living with chronic pain.

Here it is. It's actually from breathing space. I just find the chaps voice nice. If nowt else, it helps lower my BP.

ljmupsych.eu.qualtrics.com/CP/File.php?F=F_5aRRNhJNCz5qq5n

@RainbowZebraWarrior

Thank you. I will try that link tonight.

I am already on 2700mcg of Gabapentin daily for nerve pain but without the Amitriptyline on top, it isn't cutting it.

I am going to try and hold out over the next few days, with the hope things settle without further meds.

i havent slept in 48 hoursa bur i managed to drag myself int he shower cos god knows when i last had one and i was itchy and my hair was horrible. im in agony as usual but nothing new there. hope everyones having an okay day

Hello everyone,

I drifted away for a while but I'm still struggling with pain.

I've been trying everything under the sun to move towards a pain free life but sadly nothing makes any difference.

I'm doing hypnosis for chronic pain which is interesting but hasn't helped yet.

I've started reiki which I do find relaxing and I can manage to switch off my pain for an hour during that time which is blissful.

2 hour mri booked for tomorrow, groan!

How is everyone doing?

@doadee I fall asleep in MRI machines

I'm OK. Very tired today and achy. But nothing new there. Been looking at finger splints that look like rings. They're cool but at £25 a piece I can't really afford them.

I don't mind the mri too much but I wish I could ask to be sedated, I love the feeling of being sleepy and having no pain for a while. Its so blissful.

If I could pay to go and lie on a drip for an hour I would.

No painkillers get rid of my pain.

Oooh wouldn't that be good? Just sedate us every so often to give us a break from the pain.

Still fed up. House is messy which I hate (dd been, love her dearly, amazing carer but it stays where it lands! I can’t walk, even with the Walker it’s becoming increasingly difficult, get out of breath going from sitting room to kitchen because overweight, but living on cheese on toast, bread and jam and cereal most of the time because it’s also increasingly difficult to stand up or sit down. My hips are locking again if I sit, agony standing up. I’m just fucking miserable.
All suggestions welcome. Dr knows and says I’m just overwhelmed with being in and out of hospital. It’s the only bloody time I get past the front door!

Oh @Gilead that sounds awful. No wonder you're miserable. I've no suggestions that will help, but we're always here to moan too.

I find eating well so hard takes a lot of times and energy to plan and cook well. Then I do end up with fridge full healthy stuff and to wrecked to use it and it goes in the bin. You can do a lot in 10min cleaning wise though. I use paper plates so can go straight in bin (we have no recycling) and helps keep washing up down. Then got rid of washing up bowl and just try empty draining board before bed while I boil the kettle. Little things but once kitchen side is tidy feels less over whelming.

I have a bad cold. First time I have become ill whilst being on immune supression treatment.

I am coughing a lot and barely slept last night. I am really struggling and feeling awful.

Hurrah for incontinent pads,they catch wee from coughing, sigh. Trying to find a silver lining.

Lft covid test was negative.

My breathing is bad atm my oximeter has me between 91 and 94. So I am keeping an eye on it but not too worried.

Really hopeing I will feel better tomorrow.

Dreading tonight, night time is so hard when you can't sleep, coughing and in pain.

Much of my pain is due to forcing myself to walk a bit each day and having no choice. So use Walker downstairs for drink, food, letting dog out, food prep. I can only do one of these things at a time, it’s agony. I should use a wheelchair in the house, I could do so much more! I think I somehow feel that I need to use a chair indoors. I know my hips are more than a tad fucked and I honestly don’t know if I can carry on with the walking lark.

I think I need permission to use a chair indoors!