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Chronic pain

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Chronic pain Cafe - support thread #3 All Welcome

989 replies

Akire · 27/11/2021 12:09

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

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15
Akire · 02/12/2021 16:34

Hi @doadeer good to see you, is coedine keeping pain at bay?

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doadeer · 02/12/2021 16:41

Yes I mean I can function.

I had to stand for 6 hours the other week running an event. I managed to mask the pain until the very end when it hit a 7. I slept for 11 hours then woke up next day and vomited.

My body is just so unhappy 😢 I know that's not a medical term but that's how it feels. I always feel heady and hungover

GoGoPowerScooter · 02/12/2021 17:02

Please can I join you? Suspected psoriatic arthritis, waiting to see a rheumatologist. Diagnosed with psoriasis twenty years ago, hasn't been too severe and no sign of it at all for ten years until it flared up on my scalp last year. Then joints started swelling painfully and GP has referred me to rheumatology. Hands, wrists and ankles are the worst, like toothache. Cocodamol makes me feel horrendous mentally; naproxen has aggravated my IBS despite omeprazole. Just spoken to my lovely GP who has prescribed diclofenac suppositories 😱 in the hope of those not irritating my stomach - I guess anything's worth a try! Hope everyone's surviving the cold weather 🙂

Akire · 02/12/2021 17:03

Working with pain is so hard I take my hat off to you. Not much recovery time for you when work takes everything.

I should taken codeine for my no
Idea what it is pelvic pain but took flu meds with decongester instead now regretting it. 3h and 6min to go!

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Akire · 02/12/2021 17:07

Hi @GoGoPowerScooter welcome to the pain cafe Flowers hope you find threads helpful to pop in and out of. Sounds like your GP is helpful, it’s really interesting how some GP find drugs to try and other spend whole time saying no there’s. Nothing else.

I had those suppositories once or emergency doctor for mega migraine they only thing that ever offered relief when couldn’t keep a drop water down. Yet 15y later no one else will give them me even though it be free times a year. It’s so hard.

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ndo4000 · 02/12/2021 17:59

@doadeer I'm here because of back pain too. I know what you mean about having an unhappy body.

Standing for 6 hours must have been hideous. Although for me, it's sitting on hard chairs which hits my sciatic nerve and is a killer.

Am booked in for an epidural steroid injection next weekend. I have to take a COVID test on weds and then isolate until the treatment. God knows how I will the the school run!!?!?!?

Akire · 02/12/2021 18:04

I had that few months back they didn’t ask if you lived with anyone else all rather odd. Stay home as much as can where a mask and lateral flow on the day. It’s not as if they are doing anything that end is it you still have mask they still have full PPE

Went to dentist this week didn’t ask you to do LTF I did it anyway and they are actually in your mouth it’s bizzare

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doadeer · 02/12/2021 18:10

@ndo4000
Oh ive had so many procedures with covid tests I have a toddler so sometimes being outside was unavoidable I just tried to not be near anyone and kept mask and distance!

Hope the steroid injections help you! I've had lots of them.

How long have you had the pain for? 💐

ndo4000 · 02/12/2021 18:47

@doadeer what are they like - I'm really nervous about it.

I've had increasingly bad sciatica for the past 4 months and now how pins and needles in my foot.

Had MRI last week and going for the jab next week. I know I might not be a permanent fix, but I'm not ready to try surgery yet and am hoping it will mean I can get off the 10,000 pain killers I'm currently on.

How long have you had your back pain?

doadeer · 02/12/2021 19:39

I think there are different kinds I've had steroid and painkillers injected into my facet joints, about 8 injection sites and I also had nerve ablation which is burning the nerves.

I found them OK. I was sore after I didn't get much immediate relief. Make sure to take their sedation offers - it's much nicer when you are all sleepy lol.

Don't make any plans after, you might feel fine and pain free but best take it easy.

Really hope they help you.

I've had daily pain for 3.5 years now, started in pregnancy - I've not got faulty pain receptors which won't stop firing off 🙄

ndo4000 · 02/12/2021 20:22

Oh wow - I am a novice compared to you! I feel bad moaning about a few months of pain, when you (& others on here!) have had to deal with it for years.

It must be hard dealing with the pain and a toddler? I have 3 dcs and the youngest is 3 but the other 2 are teenagers and very helpful!

doadeer · 02/12/2021 20:44

Yes, it's hard. He is non verbal autistic which also brings challenges.

But... This whole experience has taught me im stronger than I ever knew 💪 sometimes have to look at the positive. And I've also now got killer abs from so much pilates lol

When are your injections? Hope you're not too nervous xxx

Akire · 02/12/2021 21:02

@doadeer

Yes, it's hard. He is non verbal autistic which also brings challenges.

But... This whole experience has taught me im stronger than I ever knew 💪 sometimes have to look at the positive. And I've also now got killer abs from so much pilates lol

When are your injections? Hope you're not too nervous xxx

I think we do forget how strong we are. So far we have survived 100% of our awful days that’s pretty good success rate!
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HerRoyalHappiness · 02/12/2021 21:23

We definitely forget how strong we are. People on the other side of this can't for a second understand what it's like to be in so much pain. I live my life dealing with more pain than most people can imagine and I get through each day. I'm amazingly strong.

doadeer · 02/12/2021 21:32

Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly's arthritis was like: as if some big old cow had got into her house and wouldn't go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.

When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly's parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn't there, and they preferred for Molly to go along with the pretense.


Always think this poem is so well articulated

doadeer · 02/12/2021 21:33

@HerRoyalHappiness

We definitely forget how strong we are. People on the other side of this can't for a second understand what it's like to be in so much pain. I live my life dealing with more pain than most people can imagine and I get through each day. I'm amazingly strong.
Yessss 👏💪

It's absolute bullshit you have to deal with this but you know how amazingly strong you are

ndo4000 · 02/12/2021 21:50

@doadeer what an amazing piece of writing. And so true....

Injection is next Sat..... gulp.....

doadeer · 02/12/2021 21:52

You'll be fine honestly! They have done it a million times. Enjoy the sedation and just relax. You've got this. Just really hope it helps you

Worrysaboutalot · 02/12/2021 23:03

I like this analogue too..A gorilla in our house

The Gorilla In Your House

Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed.

Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, itwillhave an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle.

However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances.

Negotiate with your boss about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas).

The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house.

Akire · 02/12/2021 23:17

I love the Gorilla story, i would add people coming to See you and acting all surprised the Gorilla is still there! But he was here last time… yes I know. But he can’t be here all time. Yes all the time. Haven't they found something to get rid of The gorilla ..nope. Well you must not want the Gorilla to go!!

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sweetkitty · 02/12/2021 23:57

Love the Gorilla story - almost made me cry it’s exactly it! I remember once my SIL who is very sensitive about her age was having a joke with DH about him getting older (she’s older) when I said I’m still the youngest (as a joke) she said well I’ve not had to take so much as a paracetamol in years my body is in much better condition than yours! She’s also made other comments about drugs basically being toxins and you shouldn’t take them. Yes we all just love taking pain killers, we do it for a laugh. The side-effects are great and being accused of being addicted and a junkie all the time is fab too.
Sorry rant over Blush I’m feeling very down tonight (teenage DD stuff)
@Akire definitely the cold have done about 20 LFTs
@doadeer that sounds tough I work with non verbal autistic children everyday and it’s exhausting come 3pm I’m ready to hand them over, parents don’t have that option.

HerRoyalHappiness · 03/12/2021 00:56

Love the gorilla story. That's exactly what it's like.
Sometimes I can accept my gorilla and I think I have it under control. But its still a gorilla at the end of the day and it will do as it pleases, which means often I don't have it under control at all!

Like now. I'm awake in the middle of the night again because the gorilla is playing havoc on my hips meaning I can't sleep because this bloody gorilla won't let me

Akire · 03/12/2021 04:40

Cough cough cough cough cough cough. Thank goodness early morning radio!

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HerRoyalHappiness · 03/12/2021 07:10

@Akire I hope that cough clears up soon

Today is own clothes day at school. DD is adamant she's going dressed as a donkey and I don't have the energy to argue it so she's going as a donkey.

GoGoPowerScooter · 03/12/2021 08:13

Love the gorilla/cow analogies - so true! DC both have ASD, and so many people just don't get that our life is different, it's not a case of fixing things to make our family just like everyone else. It's really shown me who my real friends are.