Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

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 through it. All welcome jump in and feel supported

I'm terrible with meds and remembering to take them! DH bought me a pill organiser otherwise I would be useless.
Morning routine is
2x codeine
2x thiamine
2x vitamin D
1x magnesium
2x strong vit B complex

Lunchtime:
2x codeine
2x vit B complex

Evening:
1x cerazette
3x amitryptaline
2x codeine
1x magnesium
2x strong vit B complex

I'm exhausted even just typing that out 😂😂

i take my meds in a certain order every single time so i always know if im missed any because of the routine. I take 15 medications a day plus cream for my ezcema so ive created this routine for myself becaus ei was getting in a mess tryignt o remember what id taken and when. I also have one specific drawer that all meds are store din in the order i take them in and no one but mes allowed in it so it doesnt get messed up!

@Gilead

I’m fed up. I’m tired, I’m hungry, (living on cheese and biscuits) I can’t stay in bed (dog) but I’m in so much pain I can barely move. On top of my arthritis ( Tramadol, Paracetamol, Oramorph) I’m having a sciatica flare and the meds don’t touch it. I have residual proctitis (colon removed, rectum left) and have had a severe allergic reaction to the steroid foam so sitting down hurts. Got left with nerve problems after colectomy, so numbness with burning on left thigh, sciatica on other side. All I can do is sprawl on the sofa and cry. Sorry, just needed to say it somewhere and didn’t want to add to the never ending list friends have to listen to. It has been sodding relentless this year.

Hi @Gilead you are very welcome this is certainly the space thank you say how difficult you are finding things. Sorry it’s so rubbish, it not just pain is it it’s all the knocking on with sleep not eating and everything else. Don’t think every heard a Doctor ask how emotional I’m coping with a pain it’s as if it’s a rash and totally separate.

Thought with a rash least May acknowledge social affect and feelings if on face say. How was your night?

Oh fab. Back to horrendous nights sleep again! I think I saw every hour. Hopefully it goes back to normal when this heat goes away. I am a full on grumpy cow when I'm too hot.

Thank you Akire it wasn’t to bad, although I did take two zolpidem.
How are you?

Slept ok just having coffee and surveying the nights damage and how much energy have today. Need try make Gp apt but ordeal in itself. As we all know!

Still upset over Social care chat and most media today taking about how me personally making the “hard working” person pay more. More under deserving Disabled dragging society down burden narrative. Not as if I will benefit from social care changes. I have no savings or assets but my “income” only benefits is still taken from me at £6500 a year. Well not at moment as I’m getting zilch. Trying build up some savings but already had buy new washing machine and fridge freezer last 6months.

@Akire I know it’s so hard, but I think you must stop reading the social care chats and you must not take it personally. It’s all so mixed up with propaganda and politics and outright lies (remember when our dear PM said we’d have £350m more per week for the NHS without the EU… and then he said he never meant that and how could people have even thought he meant that?) So it’s bound to be a real bun fight in every direction and people forget that something could happen and tomorrow it could be them suddenly alone and wheelchair-bound (I hate to be horribly morbid but all it takes is one terrible vehicle accident with family in the car). I’m just sorry you don’t have the care you need now.

@doadeer I hope you see some positive benefits from that injection soon!

@cricketmum84 That’s amazing weight loss; congrats.

I JUST, week plus later, got the results of my MRI and it’s… bad. I’m a bit devastated. I didn’t hear for that week apparently because it looks so crap that they’ll be discussing me at the Friday round table to determine if I need another diagnosis (to add to the two I have) because they’ve discovered inflammatory arthritis in my back that is worse than what happens in the disease I already have. So I may get a new and horrible diagnosis of spondyloarthritis, or ankylosing spondylitis. I guess part of my sacro-iliac joint is now fused, and I’ve never had it surgically fused; it did it on its own. More pain? oh yes please, I didn’t have enough pain.

Oh no @RightYesButNo hope it’s not bad as you think. Who needs another condition.

I think have UTI to add everything else. Ordered some anti bio on line which helped before. Even if chair was working my Gp doesn’t test urine any more. So talking e-consult and waiting days results back even if find someone drop off.

Luckily not burning and running loo every 5min but rock hard bladder waves of pains be showing up on testing strips. So my day is drink drink on loop.

Oh @Akire that sounds so unpleasant. I do hope the anti bios can help. It’s always one more thing!

I start spine physio Friday so that’s going to probably be more pain but mat least I hope pain in exchange for slowing down the condition

It’s ok not awful awful just anything thing. Physio can be hit n miss I hope they can help and you get someone nice.

Good get support here x

furious with the gps, they didnt send half my prescriptions through so i have no painkillers and no seziure medication and none of them are meds im meant to just stop dead!! this is not the first time either so ive asked for the details fo the practice manager so i can complain. i understand services have been disrupted due tot he pandemic etc etc but leaving someone without important medications more than once is ridiculous! ive had multiple seizures over the last few days becaus ei dont have my meds

That’s dreadful if not medically neglectful. The whole NHS is hard with repeats such time limit before can order then wait days chemists sort. Hardly leave you much wiggle room sort any issues or if you unable to get out for few days. I know they don’t want you to build up stashes but having least few weeks in advance would mean never totally run out.

Last time I complained to Gp because all through pandemic their waiting room (it’s old converted semi detached house) had windows all shut. Lest 5 of them because bay window and no air flow through as 3 doors to get into waiting room. It’s like middle of pandemic and a patient has point out they could one single window! You knocks your trust in those supposed know better.

yeah its terrible and the two most important ones im missing are controlled drugs so im not allowed any extras to build up an emergency store, i gte given exactly 28 days worth at a time with absolutely no wiggle room.

You know my feelings one. They should never have left you without.

@RightYesButNo I hope physio helps you. I found some are great, others have no idea

@OneNightTimeMenaceStrikesBack, it's a bloody scandal how GPs are just cutting off patients from prescribed drugs without notice.

If I have any of what you need I'll post them to you myself. I'm past caring about niceties.

me and royal are a right pair, she dislocated her shoulder the other day, ive done mine today! fell over having a seizure and it popped right out and i couldnt get it back in myself like i usually do so it was a trip to a&e. the a&e doctor got me soem of my seizure meds to tide me over til i get my actual prescription, he just couldnt get me the painkillers so ill have to suffer with that but at least the seziures should calm down

@OneNightTimeMenaceStrikesBack

me and royal are a right pair, she dislocated her shoulder the other day, ive done mine today! fell over having a seizure and it popped right out and i couldnt get it back in myself like i usually do so it was a trip to a&e. the a&e doctor got me soem of my seizure meds to tide me over til i get my actual prescription, he just couldnt get me the painkillers so ill have to suffer with that but at least the seziures should calm down

Not only damaging health then I hurting yourself in process. My full sympathies!

My bloody GP took me off zolpidem today and is putting me on antihistamines instead.

@Gilead is it phenergan? I was given it instead of zopiclone and it wasn't as bad as I expected it to be. I did get reasonable sleep.

Evening ladies - well I have a new pain my right jaw is inflammed and very very painful when I eat. Went to the dentist and it’s not my teeth, the muscles round my jaw are all inflammed and I can’t open my mouth much and my jaw clicks. I’ve to take ibuprofen and if it’s not better get a mouthguard made at a cost if £80, apparently I’m grinding my teeth at night from stress. So I’m on dihydrocodeine x 2, paracetamol x 2 and ibuprofen x 2 twice a day now.

Our GP surgery is a joke haven’t seen an actual GP in forever, we have a triage system so you phone at 8pm and hope you get through to a receptionist who then informs you if. You wish to speak to a GP you have to wait by you phone from 9-1pm they will only ring 3 times and if you miss it tough. Now I’m a teacher and I can’t be ducking out class and talking about my personal problems in the corridor. I need to see an actual person!

Evening another one awake here. Mmmm I grid my teeth my jaw has never inflamed! Hope it doesn’t keep you up all night.

The phone at 8am is so silly. Be a lucky person you don’t spend week in agony. Bad luck well tough just suffer.

Some GPs are useless.

I'm exhausted. Didn't get a good nights sleep last night. Think ill have a nap once the kids are at school.

Me three! It's just too hot for me. Am hoping to get a better night tonight now the weather is cooling down.

Heading back to hospital this morning to get fitted for my new orthotics. I'm getting ankle splints that should hopefully make it easier for me to walk as my ankles are so weak they can't hold me up very well!

@Orangesandlemons82, it’s promethazine, which I guess is similar. Thank you for the reassurance wish I could find pain relief that works!

@Akire been sleeping on and off it’s 28 degrees here I’m in Scotland it’s September I don’t like to take anymore than 4 dihydrocodeine/ibuprofen a day as 1) the ibuprofen will wreck havoc with my stomach and 2) I’m only “allowed” 56 at a time so that’s a fortnights supply, it’s such a hassle. Down to the GP surgery fill in a form, 2 days later to the chemists pick up prescription every 2 weeks.

Oh I have fibromyalgia. Raynauds, chronic migraines and sciatica. I’m so fortunate in that I can still work with some modifications.