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.

Sounds progress Gilead. I’ve had paracetamol on a drip it was bloody fantastic. Nothing like over counter you take that does nothing. Not sure what made it more effective but maybe that’s why medical professionals say take paracetamol to everything if they think it works as well in a drip!

Still no news from surgery so not sure if now think no point replying as still have to “wait n see”. Will email them asking if received the e-consult or not. I know they did as got auto reply but sounds less demanding (maybe)

Can't believe there's no news for you yet from surgery @Akire That is just pants service and no excuse.

@Gilead paracetamol in a drip is amazing stuff. I had it a couple of years ago when I was admitted with Quinsy. Because I responded so well, they took me straight off it and sent me home. I couldn't walk. Was crying and clinging to the walls on my way out. Another patient had to help me to the entrance and booked me a taxi home. This was 1am. Discharged at 1am - a lone, single female! I was back in the Freeman within 6 hours and back on the steroid and paracetamol drip. Hope you manage to get sorted, then home and comfortable.

I've been to physio tonight and knackered. But my Rhemuy physio has given me a letter for my tribunal saying she frequently sees me struggle to walk 20 metres even though I have two crutches. And that i get dizzy and my balance is awful. She tells me every week that her heart is in her mouth when I lurch to the right and she has to catch me. (My right side is my worst)

So fed up ng tube left capped. Aspirated 200 ml from it earlier. Which is fine. Then stoma pancaked. Which is good, almost normal but definitely still not clear as in need of an antiemetic!

Well I'm in hospital with DD. They're going to do a CT scan on her brain in the morning. For now she gets to play on the moving bed.

@HerRoyalHappiness

Well I'm in hospital with DD. They're going to do a CT scan on her brain in the morning. For now she gets to play on the moving bed.

❤️❤️❤️

Sorry I've not been on much, folks. I've had a hell of a week with constant burning pain and wanting to cry my eyes out.

Sending gentle hugs to you all ❤️❤️❤️

Hope the scan gives you some answers @HerRoyalHappiness you need some luck on your side.

Have emailed the doctors about Mondays e-consult so see what snappy email I get back. Brrr it is cold here today. Need venture out as far as landing and try do gas meter reading though mine is about 8 foot in air and need use zoom on camera to read it!

Finally have apt this afternoon phew. Going also push for Gapabtin or tramodol see if helps with nerve pain since no consultant apt is up coming.

I’m back! Usual farce over Dr is upstairs so had go in tiny room with new chair or log in and he stood with his bum to me, nice!

Lots of what’s wrong and me saying I had a kidney infection. How do you mean? Er I had a kidney infection. Pain in my kidneys

He didn’t know what to do! Do I want a scan? Well Gp2 said I would need scan if still hurting. GP3 said no point! So I’m having a scan at some point. Had do another urine test though not drank all day as could been sat there for ages so only 1/3 of pot. Not sure how much they need?? Suppose can always ask me again.

I had written out page about other pelvic issues and pain relief. He like “Well problem with pain killers long term is addiction “ he asked me if I took cannabis, no. Alcohol? Yes. Thought he wasn’t going give me any. I said well not noticed any side affects with 2 units. I know can if drinking heavily and on high dose.

So started conversation and got some. Though no idea if repeat or one box which they whole page was about. As happy keep giving me one box every apt but not on repeat. I mean adds up to the same thing over a year right?

Can’t be policy we don’t give pain killers for long term conditions as what’s the alternative? Suicide or drugs or alcohol I mean you can’t just live with it in any sort of healthy existing way. But you all know the problems don’t you!!

morning lovelies. ive been up all night in pain and just not able to sleep. its injection time in a few hours and then hopefully ill sleep

How you feeling now?

Had ok Friday so for went to chemist he’s given me some codeine but only 15mg. Which is what you can get over counter. I can take 2 up to 4 times a day. So he’s given me basically 7 days of max dose. It take me longer that get an apt for some more!

So will Ek them out as much as can. Luckily pain behaving so far today but they don’t know that. Make it so hard all the time. Then removed 4 of my normal regular meds from the repeat page. So asthma Bp the pill reflux meds bowel meds. Why ?? They not even said no refills left and if you didn’t know the names you be stuck trying ask for them as totally disappeared.

Been looking at new GP but for massively build up area we hardly have any. No idea how accessible others are. I mean you get usually get through door after battling heavy doors and like but then everything else is hard work. It’s like constant hamster wheel

@OneNightTimeMenaceStrikesBack hope all went well today and you manage to sleep tonight

@ICrunchCrispsNotNumbers sorry to hear you've felt so bad with burning pain. Where are you at currently with pain meds? Do you have any appts coming up where you could discuss. Being left in pain is unacceptable

@Akire I so wish I could help you. If I was still a current practitioner, I could have had some sway, but I'm no longer on the register due to letting registration to my governing body lapse. I'm wracking my brains as to what I can do to help. I'm beyond angry at your situation.

Thanks @RainbowZebraWarrior I found pain dairy helpful to record apt and hat I said. But going to start medical journal of what things I’ve raised with who when. It’s so hard when see different Gp each time. We still don’t know what’s causing bowel pain and no plans.

I’ve lived chronic pain so long takes lot to go doctors and make a fuss but something isn’t right. But after reach certain point of disability I think their attitude is well your broke already so.

Suppose I could type out something along lines or “I’ve spoke today about x pain and this is the X time of asking” you have decided to do X or bloody all! But make them sign it. Don’t really have much faith in other practises either. Think I be seen as problem where ever. Yippee!

Having nice drink this evening so least semi room spinning to me. Cheers everyone

@Akire I take major issue with disabled people being written off in this way. Especially younger people. I've had some success recently with my diagnoses, but also had years of bitter disappointment, confusion and gaslighting. I think this is the reason I've decided to become a patient advocate. Wish you were in my region!

Having said that, this is me tonight reading this 600 page medical tome in preparation for my Immunology appt on Wednesday.

I'm going to switch off now though, and indulge in a vodka or two. Cheers, my lovely.

Yes it’s true about gas lighting. Who says to a patient it’s chronic pain or addiction? Is not like I ever been offered counselling or bloody mind-fullness app! I think because I’m already not working and low function they don’t see it. If had sign me Off work every fortnight may be seen as more serious.

Thread and support is a life saver. Can feel very personal can’t it.

@Akire sadly I think you might have a point, which makes me all the more furious on your behalf.

@Gilead how are things with you, pet?

was up most of the night with the labrador, she was coughing so bad. shes been to the vets this morning and has a chest infection so shes had a shot of anit bitotics and weve got a weeks worth of tablets for her. ended up in the bathroom with her witht he shower runnign to make it steamy to ease her cough bless her

and yes, doctors do gaslight us, telling us it cant be that bad or we're imaging it. soem of them are so rude ot us when we just want help

Poor dog, glad they have meds now. Feel like have so much to do and can’t get on top of things with daily energy I have.

[quote RainbowZebraWarrior]@OneNightTimeMenaceStrikesBack hope all went well today and you manage to sleep tonight

@ICrunchCrispsNotNumbers sorry to hear you've felt so bad with burning pain. Where are you at currently with pain meds? Do you have any appts coming up where you could discuss. Being left in pain is unacceptable

@Akire I so wish I could help you. If I was still a current practitioner, I could have had some sway, but I'm no longer on the register due to letting registration to my governing body lapse. I'm wracking my brains as to what I can do to help. I'm beyond angry at your situation.[/quote]
@RainbowZebraWarrior sorry for the late reply, have only just seen your message!

I'm currently on 20 mg Amitriptyline, 20mg Baclofen, and 30mg Cocodermol. The rhumy doctor at my GP surgery is I think reluctant to diagnose me with fibro, because he is unsure If my pain is due to my CP.

I am very doubtful it's due to my CP, because I've never suffered with burning pain until now. I'm still suffering with pain in my hands too, which again I've never suffered with until recently.

He did say that If I hadn't got CP, he would definitely diagnose fibromyalgia. I've done some research and reading online, and I've heard of people with CP who have been diagnosed with fibro in later life, so the fibro thing is definitely a possibility.

The last time I had a doctor's appointment, he did look at my medication and he tried to find out if they is anything else they could give me.

The only thing he could think of was Amitriptyline, which I'm already prescribed. He's increased my dosage to 20mg, which I'm still taking.

The last time that I spoke to the hospital, they informed me that I've been put on the routine list and it will be a year's wait to see a consultant because I've been put on the routine list.

I asked the doctor who had referred me to re refer me, and I believe she's wrote to the hospital again, but I've heard nothing. I'm going to chase that up with them again, as the flare ups are getting steadily worse.

The good news is I'm seeing a new physio and having weekly sessions at my local hospital. I've got an exorcise plan and she's helping me with my typing as well. I've also been given a crutch that will help me when i'm out and about.

Hi all!
Glad dog is on the mend @OneNightTimeMenaceStrikesBack
Sorry you are being the victim of prejudice, doctors are the worst for this, @Akire.
Looks interesting reading @RainbowZebraWarrior!
I’m still here but they’ve interestingly add Ed a kidney infection! It hurts! So tpn line in for feeding

@RainbowZebraWarrior I am planning to get another appointment at the doctors to discuss it as I feel that they could do more and are pinning my pain to my CP, which just makes me more weary of speaking to them.

I think doctors think if you have one major condition you don’t benefit from another some how? I think I have fibro I get so much chest pain but it last for hours/days. Enough trouble getting them manage big stuff already.

Managed take one of my 15mg codeine today with 3000g paracetamol. Quite hard pinching both sides. I’m sure scan isn’t urgent but way things are can see me having few more GP apt before I even get a scan.

Gilead sorry you have kidney Infection on top. Hope ward is ok, are they allowing visitors or is covid still high up?

another night of no sleep at all. im beyond exhausted now. going to ring the access team and see if they can get the doctor to send me some sleeping pills, its the only thing getting me any sleep at the moment but ive used up the last ones they sent

hope everyone has a gentle and soft day today

Morning. Absolutely shattered this morning. I didn't want to move out of bed.