Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

the weathe rmakes ti worse, the house is warm and cosy b ut i feel the cold easily @Akire my pain is always an 8/10 even with painkillers though its the nature of the disease ive got

Very cold here tonight DH and I went shopping at 7pm and it was already freezing. Don’t like being outside when it’s that cold and dark. I did treat myself to an amazing huge big warm coat this Winter, it’s like being wrapped in a duvet. Always have my gloves and hat on too. We are supposed to have windows open in the classroom but I’m like no way, it’s freezing outside the heatings rubbish as it is, the windows are old and single glazed and let in a draft anyway.

My arms have returned to normal after the flu and covid boosters so just the usual aches and pains to deal with

Looks like I'm fighting a losing battle against the doctors again. Requested more cocodamol twice now and they won't prescribe.

I fucking hate them.

@SpookyScarySkeletons

Looks like I'm fighting a losing battle against the doctors again. Requested more cocodamol twice now and they won't prescribe.

I fucking hate them.

That’s rubbish (again!) what’s the plan of action?

Kitty that sounds awful to I thought Gov advice was 5m open evey half hour for airflow not constant live in the attic. Wouldn’t expect that in your home so
Why school? Poor kids school was freezing enough best of times in winter never mind with windows open.

@SpookyScarySkeletons

Looks like I'm fighting a losing battle against the doctors again. Requested more cocodamol twice now and they won't prescribe.

I fucking hate them.

Oh no, Spooky. That's so bloody frustrating. Have you got any other health professional you can turn to? NICE guidelines for your condition? I've been there before and chucked the book at them. Always a worry that they will do it again. It's exhausting. Really feel for you.

How is everyone? Still got chest pain comes goes hours at a time so annoying. No signs or chest infection or anything though.

Still suffering a bit after being knocked over by the dog in the park, chiropractor said it was like whiplash, still in pain in my neck and lower back. I am my own worst enemy though I drove to pick up a couple of rabbits from a local rescue that needed an emergency foster home, so driving and sorting the hutch out have made it worse 🙁

Aw that’s kind thing to do, neck whiplash pain is horrible can’t get comfortable at all. Hope the rabbits are cute!

They are ❤️

Very cute bunnies!
Things are looking up here. Still in ridiculous amount of pain, but finally got a doctor to listen to me and run more comprehensive tests.
Also thinking of upgrading mobility aids from a stick to a rollator, but my internalised ableism is holding me back. It sounds silly, but I get stares and questions about my stick as it is, and a rollator will be even more obvious. But I do need to be able to get out and about more, and it would help.

They are cute ! I think stick always gets more attention as it looks so temporary. No one gets wheelchair or rollator for any other reason than permanent so far less questions. Plus it screams more “disabled person” so scares loads of people away.

They are cheap enough try without losing to much, a lot more sturdy and less hard work than a stick.

I’m lot pain but dont want take anything when going bed as trying save what I have until get more after Xmas. Body clock still out at the moment. Need check if i have any paracetamol left I normally have a good stash but after two weeks covid I just have mountains empty boxes and packets Everywhere and no idea of what’s left. Have start the pop into every shop in area to build it back up. Hope everyone has a good night

@SpookyScarySkeletons

Looks like I'm fighting a losing battle against the doctors again. Requested more cocodamol twice now and they won't prescribe.

I fucking hate them.

That's terrible. Can you ask them to justify their decision? (Though it's so exhausting having to fight isn't it)

Not such a good night, I think I have done too much and between pain and overactive brain didn’t sleep till 2am. Unfortunately I think I am on the way to doing too much today as well, I have already been out and fetched the click and collect order, dropped some bags at the charity shop and the clothing bank and put all the groceries away.

I still have parcels to take to the post office (two still to wrap) and the dogs to walk 😴

It is really difficult with the pain medication, I have 30/500 Cocodamol but I ration them and only take one normally, they were happy to prescribe more last time I asked as the previous ones had lasted 8 months. I do stretch them by taking the lower strength OTC ones, but as you say @Akire you have to try not to go too often. I probably only take them 2-3 times a week, but it means deciding if the pain is bad enough and that’s not always conducive to sleep.

Even star you are doing loads and loads! I tend cut mine in half but hard with paracetamol as can only take 500 paracetamol with them as half has 250. It’s right pain in the ass. That’s the 30/500

I’m worried if I say give me 15/500 they will act all surprised I’m getting through them quite as fast. Don’t want rock the boat. Reading previous threads seems to be if you are on long term meds you should always be in pain at some Level because if you take higher dose and have pain free day your body gets used to it faster. Then any pain fees like “Oh no let’s up the dose”. I find 15/1000 is enough manage get on doing essentials things with constant ice blocks.

Waiting two parcels today. The days are rocking by should crack on but pelvic pain is really pulling , the worst part is not knowing what it is. Makes the pain feel worse if you know what I mean you imagine all sorts.

Dr Mahmoud is my new favourite person of all time. I genuinely hope he has a long and happy life 😂😂

He has accepted my prescription request for codeine!

Whohoooo that’s great maybe he has read your notes! Was it normal request or did you have to offer your body and soul written in blood?

@Akire

Whohoooo that’s great maybe he has read your notes! Was it normal request or did you have to offer your body and soul written in blood?

Haha it was a bit of a begging letter to be honest. He must have taken pity on me!

@SpookyScarySkeletons that’s good news, I hope at the moment they are going to be more generous with medication as it’s not as if they are offering appointments to see anyone. It’s not acceptable to leave people without pain relief in the current situation, or at all really.

I need go battle with mine after Xmas they will not put stuff on repeat. Had mini pill 3m had a review online all good. They gave me 3m even when standard practise is 12m supply In one go. But it still not on repeat.

Ditto new asthma meds even though after a month had online review and said yes it’s working much better than old one. Currently taking half dose to last till Xmas (after covid!) because can’t face e consult forms and more reviews for a medicine they are happy for me to have and have checked on. Why?

Same With pain killers though I understand that more. But they must spend far more hours sorting out this crap x 10,00s of people.

Gone are days of being on long list meds that boots ordered on repeat so cupboards where bursting but when you are constantly seeing medically professionals and they agree you need them. Why the tight hold?
It’s part of chronic illness I really struggle with feels like begging constantly

It must be absolute pot luck my doctors prescribe co-codamol 15/500 by the 100s, I take 4-6 a day most of the time but it's stopped working for me. Looking at what else I can take.

I'm starting a new cannabis programme waiting for approval from the complex team apparently it's had good results with fibromialgia - not sure if I have this but it presents very similar.

im waiting on my prescriptions comign to cover me over christmas. i oprdered early but they had problems sorting it so i hope it comes by the end of this week ior ill be panicking about it

doctors can be so weird about prescribing pain relief, i had to fight and fight to get anything at all even though im in 12/10 pain every day and have been since i was 14 years old

Another day over and nowt to show for it. Sigh it’s so dark on flat bearly see what I’m doing. But if have main light on whole school opposite can see straight in.

Keep having lots pings from NHS to
Book booster (it’s booked you numpties check system) and now from GP who running special clinics over weekend. I wish I could but I can’t!

Has anyone tried palexia tapentadol?

Like a fool yesterday I went about running errands (including the GP though so that was useful) and wore myself out, then blacked out two hours into work this morning. Most of my colleagues are twice my age though (I'm early 20s and look younger) so I was taken home and put to bed in a rather motherly fashion by one of them .
So I've been resting in bed since then. Having trouble swallowing as well which is annoying. I have blood and urine tests tomorrow, yippee.

Hope everyone waiting on pain relief and prescriptions gets it sooner rather than later. All the admin really does take up way too much time, and unhelpful doctors just prolong the process, as if we didn't already have enough to do