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

im due my PIP assessment next decemebr and im already dreading it. i cant tell them anything new, if anything ive got worse i can barely move at all most days and i cant do basic tasks like cooking or washing myself or my hair or anything like that. I use special cutelery and special pen grips and even then i have to have a break every minute or two so my food is usualyl cold by the time i finish it. why they think i might suddenyl have 'got better' i dont know

Morning guys. I had one face to face home assessment about 4y ago. Even though she had my form on her lap she only asked me questions off the form. What was point of doing the form in advance? To catch you out? It took forever to repeat everything on the form. In end I had say I’m just repeating what I put on the form if you need extra detail please ask.

Did get it for 10y so while to go hopefully with covid back loads add on least 12months!

I braved it and did the e-consult form (twice as it crashed) such a pain for those of us with long term issues. “Please Describe the problem” they want you want them to do. On and on seriously anyone less perfect literacy skills or English second language got no chance. I find even ordering repeats on app really stressful. I used to let Boots do it but they managed keep ordering so much as soon as collected. Even though if I try only lets you after 6 weeks have passed.

Still least pay on back when horrible job done today

My turn get annoyed with surgery. Just had naughty text from them saying why are you ordering now when you have till mid October! I don’t have 21 days left.

I had write whole essay saying it was temp trail drug for 3m it’s not on repeat and I don’t know if doctor will decide keep me
On it or not given all my other issues. It’s not on my repeat meds so can’t order it anyway.

The whole point of essay was to ask if I need face to face or if the doctor would approve and get standard naughty text instead. Honestly it’s so stressful. I hoping get face to face and then get exam and go over the pelvic pain and bleeding issue. But looks like have try again for another appointment.

@Akire ugh GPs are so stressful! Fingers crossed you manage to get a face to face appointment sometime soon to discuss everything!

I've managed to burn my finger today, and I've got a hole in my favourite shoes

Thanks @HerRoyalRisesAgain I can highly recommend burn gel cream. I’m forever burning myself and takes sting right out really nasty oven deep burns sting like hell for days. Aw shame about shoes, repair or bin?

I'll definitely need to get burn gel. I'm a nightmare. Said to @OneNightTimeMenaceStrikesBack earlier that we both need more grown up grown ups
Shoes are unfortunately for the bin.

I think I’m going when really fight for endometriosis test, last time I mentioned she agreed the bladder issues sounded like it and that gluten can make it worse. Which is one thing I’ve had cut out. Yet seems be oh well your 46 so it stop soon ye what’s another 4-8 bloody years!

So uncomfortable all time when sit and in tummy and back and now feel nauseas all the time. It’s constant pain as well as period pains everyday of month and constant bleeding. You know what like more than one thing wrong nobody seem listen. Having constant flooding and pain from very first very every period 32 years ago hello even Google’s alarm bells would ring. Sooooo fed up

@Akire that must be really frustrating for you. Definitely push for further investigation.
I think I'll have to as well I have horrific periods. Always have done since my very first one when I was 10. Now 20 years later they're still awful. I'm afraid to sneeze or cough as it causes flooding

Yes what got me is Eastenders did story line (their character went private got diagnosed and treated in like 3m!) she had pain week before period. No one ever told me you not supposed have constant cramps for whole week before period. Then full flooding and pain all week. I thought these days doctors supposed to know how common it is. Only last 2y almost passing out with pain even got some pain killers.

Thats not good at all. Women really need to be taken more seriously in regards to our health. I've noticed we are often dismissed or brushed off as "it can't be that bad" when in reality it's absolutely horrendous.

I know this with all stomach issues I’ve been like 6 times now and no better off. You reach stage thing this must be really really serious hurt this much yet no one else particular bothered. Yet all bloating bleeding pain sickness pressure all key warning symptoms they tell you contact GP about ASAP. I suspect if I didn’t have significant other disabilities they would be far more interested. Well you don’t work or need sick note so not in our interests to bother.

I feel like that sometimes. Things are just brushed off as my other issues and not relevant even though I know its something else! The thing is if they'd listen to us it would cost the NHS less in the long run as we wouldn't need to waste time pushing for appointment constantly

Thanks listening to rant

rant away. I think we can all relate to awful health care!

im on the waiting list for an ablation after years of horrendous periods and being brushed off as 'unlucky' i finalyl have a gp who listens to me and takes me seriously and she makes sure i get the referrals i need. Ive been under gynae about a year now and they finally have me ont he wait list for the ablation. how long it will take to get it done im not sure, they put me down as a high catagory but i know theres a lot of back log for themt o get through so im not expecting it this year!

@Akire

Thanks listening to rant

Rant away! That's what we are here for!

I have taken my meds a bit earlier tonight in the hope that I don't feel as groggy and out of it tomorrow!

I can sympathise with the GP issues. It's taken me 7 phone calls over 7 working days to get them to dispense the correct dosage of my amitryptaline! Bloody nightmare!

Yes even if she does listen and refers me Gyn it be very long time before see anyone then even longer if need op to see what’s happening. Going have knuckle down and say it’s been to long grin and bear now can’t be expected this much indefinitely without something that works.

So good knowing we all share same experiences. I tell people being long term sick is a full time job!

@cricketmum84

I can sympathise with the GP issues. It's taken me 7 phone calls over 7 working days to get them to dispense the correct dosage of my amitryptaline! Bloody nightmare!

Has Amitriptyline gone onto some special restricted list recently? I'm having problems with getting a tiny dose authorised by my GP without consultant intervention.

@SpindleWhorl god it was so frustrating! I had a phone consult with GP where she advised to increase from 20mg to 30mg. She specifically said on the call that there was no point increasing to 25mg because I wouldn't notice a difference and that she would put through a script for another 28 year 10mg and to take 3 per night.

Prescription was delivered and it was the 25mg tablets.

I had to ring them a further 6 times to explain I had been sent the wrong tablets but every time the GP rejected the request because I had been given the 25mg tablets.

Thankfully someone with more than one brain cell answered the phone yesterday, understood what I meant and sorted it out!

I had some bowel meds 30ml a day. Kept giving me 500ml for 2months! Had go back twice. One them changed a totally different med Gavison to something stupid like 2000ml (4 massive bottles worth) and finally gave me extra 300ml bottle which lasted me 26 days out 60. You do wonder sometimes when basic maths are involved and keep asking could be very serious.

I could seriously get used to this dosage of amitryptaline!! Full 9 hours sleep last night and my eyes were shut before I even hit the pillow!

Also the pain is definitely reducing on a morning. I'm actually starting to see a flicker of light at the end of the tunnel.

@cricketing84, I'm glad after all your frustrations that you have had a hopeful outcome!

I find it hard to wake up even after just 5mg of amitriptyline, so I'm having to 'titrate up' or whatever it's called this time round, starting at 2.5mg. Lots of pill cutting involved!

And I have to remember to take it by 7pm.

That’s great news about the sleep long May it last! I was able go back bed which helped.

And had non telling off, semi civilised email from pharmacy saying senior person will email me Friday so that be consultation at least and maybe then drugs or appointment. Still feels to many battles though some people would have given up.