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

It's always a worry that things won't work. But if they do work they'll have been worth the money

I have a rheumatology appointment in the morning. Hopefully be given a better mix of painkillers.

£2000 is a lot of money but also hope it can improve. Surely not recommend if not decent change May do something.

@HerRoyalRisesAgain

It's always a worry that things won't work. But if they do work they'll have been worth the money

I have a rheumatology appointment in the morning. Hopefully be given a better mix of painkillers.

I'd be really interested in hearing how you get on, @HerRoyalRisesAgain. My Rheumatology appointment (phone call) is this afternoon, and I'm desperate for better pain relief now.

My psoriatic arthritis is responding ok to Imraldi, but I may have to come off it because my bloods are all over the place. And my osteo (lower back) has been incredibly painful these last few days. Fed up.

My GP decided to stop my amitriptyline prescription without even discussing it with me. I honestly despair sometimes. She then stopped my HRT! I've had a BSO hysterectomy and need it for bone health.

Bloody GPs. They're a nightmare

I've just popped my shoulder out and have to get the kids in 15 minutes. Im in agony. I need to get it back in. I may have to head up to a and e if it doesn't go.

That's really concerning @SpindleWhorl aren't you supposed to wean off amitryptaline slowly rather than just stopping like that??

Ouch @HerRoyalRisesAgain that sounds painful! Fingers crossed you don't need the a&e trip!

I'm on my way to hospital. Its gone back but I've got pins and needles in my arm so best to have it checked. Should be there in a minute. Hopefully it's not too busy

What that so dangerous why do GP do this. Hope you can get sort. Hate when they tweak things that you been on years and then someone you see month after tweaks them back. Like have to feel
Like doing something maybe?

And @HerRoyalRisesAgain hope you are back together again. Looks like Mondays isn’t behaving itself for anyone.

@Orangesandlemons82

I am due to have facet joint injections a week friday. I can't decide whether I should have them or not. I can't carry on taking tramadol everyday but am just concerned they wont work, or dont work for long and we will have paid nearly £2000 for nothing. If i went the NHS route i would be seen March/april for them. I need to make a decision and stick to it but keep changing my mind as to what I should do

I've had these twice. Feel free to ask any questions x

Feeling rubbish hearing all chat news about social care. Turns out if there is increase to pay for it it be so grannies don’t have sell their homes not for people like me who are working age and have no assets.

Feeling one more thing non disabled friends just don’t have think about. Only when sat thought if I did have decent social care my life would be very different. I used have decent care package but lost hours in review (fair enough I can do alittle more) then new funding rules meant went for £35 week to £130. So now I don’t have any care at all and really struggle. I’m washing my hair once a month not twice a week sort of level.

Also because I’m single I have pay people for things other people have family members to help with. So double whamming. Not only are you constantly lonely have pay for privilege. Just saying how it is so much going on at moment just totally fed up.

Tried explaining friend how this was the 6th Monday in row was stuck inside my tiny flat. Well least it should be fixed by the 7th monday. Ye great well that’s cheers me
Up no end. I know people find hard know what day but Really felt abandoned this time.

No need rely just needed tell someone x

Thanks, guys. Spoke to Rheumatologist a little while ago, and he is going to write to my GP to tell her to put me back on amitriptyline. Result!

Also more scans of hands and feet.

Re the oestrogen HRT, I'd already got a letter from my gynae consultant saying Evorel 75 so I just stuck to my guns with her in an excruciating phone call, and she eventually allowed me gel at a lower dose. So I bought some patches privately to bide me some time while I work up the energy to challenge her properly on the NICE guidelines.

Sending a million gentle hugs @Akire I know I don't understand what you are going through as I have DH and DC around. I really can't even imagine how I would cope alone.

You know you can message me anytime. I'll always answer and I will always be here for you even though I can't be there in person. I just wish you lived closer so I could support more x

I wish I lived close to you @Akire as well. We would have a great little network.

Aw your guys are fab. Yes is hard doing this alone. People don’t get about social care like something amazing but it’s small things. Like if you tip cup coffee all over your bed having someone there change sheets so you don’t sleep in soggy bed for days. Until you feel up to doing it. I do feel better having said it how it is let helps steam out.

@Akire I'm sorry you dont have the support you need.
@SpindleWhorl I'm glad you're being put back on the drugs

Well my shoulders in but I've pinched a nerve, so gentle exercise bit don't do too much!

Thanks everyone you are all lovely. Had decent sleep so that’s something but hip and hand pain starts in morning. Had X-ray last year after a GP told me “you don’t get arthritis in your fingers…..” I would have made effort to complain or to check she was actually qualified but the rubbish they come out with. Had think are you gaslighting me or what!

X-ray didn’t show anything but only shows some joint conditions maybe it’s muscular. Maybe it’s just old age! Trying start day feeling more positive even though up 630.

Good luck everyone getting up and out this morning

a GP told me “you don’t get arthritis in your fingers…..” I would have made effort to complain or to check she was actually qualified but the rubbish they come out with

That's ... well, nonsensical. One of the commonest starter sites of psoriatic arthritis and other inflammatory arthropathies is in the fingers!

Doesn't Saint Mary Berry have osteo in her fingers?

I actually did check on the quals of my new GP after she told me a load of scaremongering claptrap about HRT and didn't seem to know what NICE guidelines were.

I know right! Even I was like what the !!! But you know what’s like you almost have suck up to them get tests you need and me saying anything would only caused trouble.

Remind me midwife when my sister went into Labour with her first. She rang the Labour ward to be told she couldn’t possible be in Labour because the ward was full… I really think she can and that baby doesn’t care either way!!

We could probable fill a book of “rubbish health care professionals have told us”

Mary Berry had Polio as child that left her hand way it is but not held her back in the kitchen!

Haha rubbish that health care providers have told us 😂😂

First labour - "you are too far on for gas and air. You should have an epidural instead"

Second labour - "you can't be in labour you are smiling too much!" I was 8cm and gave birth around 90 minutes later.

Oh and the GP who had to Google vertigo because they have never heard of it before...

Glad you had a better nights sleep @Akire I am sleeping so much better now they have increased my medications. Right through from 10pm to 6.30am! It's bliss!

I didn't know that about Mary Berry! I'm sure I read it was osteo. Must be thinking about someone else, or a newspaper got it wrong (again).

Yes think mentioned once as she said people forever suggestion this or that gadget for arthritis but it’s paralysed from polo so nothing really help. She wanted be cookery teacher but ended up polo either in school or young teen. So got a job in new electric shop think in 60s when buying a new cooker was a day out. She had a job demo what fantastic things you could cook on your new Leccie cooker. Then went from there!

@doadeer

You have all my sympathy... With the pandemic, chronic pain, exhaustion, children.... The only pleasure is to eat. It's very hard.

My son is autistic, he is 2.5 we had a really early diagnosis as his markers were clear. I'm just praying I can get some energy back so I can be a better mum

I'm praying that to, get some energy back be the mum I want to be. I don't think they do lidocaine ones here and our ketamine treatment involves a week in hospital. My doctor wants me to do that, on a waiting list, but no idea how I can do it when it means leaving my DC for a week. Our 10 year old won't want to be left alone with her Dad, she has anxiety and panic attacks. I'm not sure the Autistic 7 year old would be ok with it, either. Littlest one wouldn't mind I don't think. I eat when I'm overwhelmed or struggling or pain's really bad, which is constantly now. I need to lose about 4 stone. We're in lockdown now, which isn't helping with pain.

Rheumatology was OK.

Trying new combo of Celebrex and Amytryptiline and if this doesn't work I'm being put on morphine.

I've also had a steroid injection today so hopefully get some relief from that.

Back again in 6 months.

It’s boiling! Had one of my did I take meds or not events. You know when pain killers in hand get distracted then 5min later can’t remember of took them! I took some more about 80% sure I didn’t! But still always worry. I’m pretty good when have in mouth I reset clock timer but when you can’t leave 4h break it can be closely judged thing

Such tough call when you have kids with SN manage along with everything else. But if you fall apart complete you be no good to anyone.

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.

@Akire, I take a picture of my meds on my phone before I take them, that way I know what I’ve had each day, delete the following morning and start again.