CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

My achievement today is biting my tongue!
I have chronic back pain and have had for 25 years or there abouts.
Caused by an epidural when I had my first labour (In a nutshell I was still a kid myself and apparently according to my consultant, they know NOW that more care is needed with epidurals under those circumstances)
On and off pain relief throughout this time and right when I'm down to once a day, because FYI Gp I actually don't like taking them, my GP decides that bribery is the best way forward to justify why she's prescribing me long term codeine.
If I try physio yet again then she will continue prescribing my meds!
She made out she was referring me to someone new who was experienced in my type of issues so I agreed.

First telephone appt wasn't bad, I religiously and painfully done the exercise programme while waiting for the proper physiotherapist to ring.
He just didn't want to listen and pretty much said it's in my head! He even gave me links to youtube to watch some other dickhead bang on about the psychological ways your body can feel pain that isnt actually real.

How bloody demoralising!
I literally do not allow this to stop me doing anything. Nothing! I work FT, often on my feet for 12 hours, I exercise and go about my business as best as I can. I've been sick from work with my back twice in all this time so not like I'm asking for sick notes etc. I'm not afraid to use my back, it hurts regardless so I have learned to get on with it. I literally have nothing to gain by imagining it or denying it. It's real! so really would have appreciated being taken seriously.
I'm tired of it all, the pain and the not being listened to.
So I'm not participating further with the physio, I'm done and the GP can withhold meds if she doesn't like it and I'll still keep going, still in pain with the real pain, not the imaginary one.
Grrr sorry mini rant over.

That sounds awful I’m sorry. When it’s a long term condition and you know what works or
Not it’s so hard not to be listened to. Then have the physio not listen or to presume without meeting you that they know what’s better for you.

I understand about codeine and long term use but either it’s something you need to reduce or not. She can’t say it’s fine to keep using as long as you do this bribe and try physio.

@doadeer

All pain is valid. All pain has an impact. It's not a competition on who has it worst, we are all dealing with our own set of challenges.

Your pain prevented you from enjoying something that for most people would be normal - that is tough. That is real x

I'm really sorry if this is the wrong place to ask but I wasn't sure and then I saw that post..

I have major issues with TMJ. The short version is, I'm wondering if
I should have botox for the teeth clenching and apparently it will resolve the daytime issues and headaches as well as the night time problems. Does anyone have experience of this?

Thank you.

I’ve not heard of it but hopefully someone will be along who does. Is this on NHS or a private procedure?

@Akire

I’ve not heard of it but hopefully someone will be along who does. Is this on NHS or a private procedure?

I doubt the NHS would pay.

One of my biggest concerns is looking like I've had Botox or ending up with plastic face.

I know vanity over pain seems crazy, I am close to doing it now but not going to rush to it. Both doctor and dentist have said it is probably a better solution than anything they can provide.

Joining the thread. Was holding out for a chronic pain topic, but I suppose this will do for now.

I'm fed up with trying to manage my pain and GPs not taking it serious enough. I feel like they must think I'm drug seeking. I definitely am not.

I have three large non cancerous tumours on my kidneys. They're causing all sorts of issues, have been in pain for a year and half now, and fed up. Tried oramorph, codeine and paracetamol. Finally got put on amitriptyline in November, and it was a game changer, but the last month it's not doing its job. Spoke to GP yesterday and they've suggested topping up with paracetamol rather than increasing amitriptyline. Bloody paracetamol! As if Ive not already tired it.

My consultant is dismissive of the pain as well, as it's "just" the tumours pulling on kidney tissue and should go when the tumours eventually shrink.

I'm on medication to shrink them. They're being treated the same as they would if they were cancerous, so chemotherapy tablets. I can't take the full required dose because of covid, I can't have the required operations because of covid. It all sucks and nobody understands just how shit it's all making me feel. I feel like I can't breathe some days.

Welcome @AdditionalCharacter sounds like you have been doing well to keep going. A pulling pain sounds horrid if it’s all the time. I love how paracetamol is supposed to be some magic drug for every ailment. If only!

We need to give ourself big clap at the end of the day. I used to have a sound app on my phone that did that lots of clapping and shouting. It helped in a ridiculous small way to acknowledge you made it though another hour/day.

@Fuckityfucksake
I empathise with this so so much. My issue is pregnancy related, horrendous pain for so many monthly, NHS did MRI it was analysed by a physio who asked me to back bend when I said it was immensely painful, he was pushing me to bend and said it was all psychological. My MRI was fine and just keep exercising. He couldn't believe any of my pain was caused by pregnancy and he was so patronising, asking me how I know what "pelvis in neutral" meant. My family own a yoga studio and I talk about anatomy every day, I've done yoga and pilates for years! Prick.

I had a private MRI and they found loads of damage on my facet joints that I've now had 2 and another one next week, quite invasive procedures.

I do think they have a real blind spot when it comes to pregnancy and birth - as if because it's so "natural" it's not a huge trauma on our bodies. Bullshit. How can they leave you for 25 years in pain, it's barbaric.

I often think if we had a bruise for every hour of pain and we walked around with these we get some sympathy at least. But we can be getting a beating night and best but no one sees so there’s no acknowledge of what you have been through.

Welcome @AdditionalCharacter
That is bloody dreadful. You're expected to just pipe down and accept what they give you. It makes me so mad. I'm sorry you're having such a tough time 💐

Thanks for the welcome.

The pain is constant, but gets worse if I move or do stretching.. my job involves a lot of movement, so I'm exhausted by the end of the day. Lucky for me I've been shielding since New Years, so have been mildly pain free.

A little clap at the end of the day sounds like a brilliant plan.

Yes I’ve found silly small things can make you feel emotional better even if do bugger all for the pain!

I'm amazed how many doctors suggest paracetamol for everything

I have never found it useful for anything!

Additinal yes, the because Covid thing is mad.

for everyone suffering.

Paracetamol is useless. I always laughed when suggested to take it while in labour before other more effective drugs are offered.

Botex is short term thing right? So even if it does make you look like had a face lift and it stops the pain it may be worth it. If you really hate it then it will wear off and you can tick another thing off the try list? I imagine is expensive though

I was on coedine more many months. Full dosage a day. I had a procedure that helped me and I came off if. No one told me and I was stupid for not thinking but I felt horrendous for the week after. Hot and cold. Shivers, sweating. Heart palpitations. Crazy reaction! Like something from Trainspotting!

The weird thing is I never found paracetamol did anything at all for anything in my life ever - but the last four months of a year of intense pain following a slipped disc (initially co-dydramol, Valium, diclofenac then two cortisone injections) - towards the end paracetamol did weirdly do more than ibuprofen. I was on the max dose a day and counted down the minutes.

@doadeer I took Max codeine for two weeks and coming off it was horrendous. Had the shakes and felt wobbly for days.

@AdditionalCharacter oh that sounds awful, so with amitriptyline what dose do they have you on? I had to keep upping mine every 4 months my body gets used to it, so I'm on 30mg a night now. Are they planning on removal?

Can anyone suggest alternative to amitryptaline? It makes me vomit. I am currently on oramorph, naproxen and occasionally co codmol. Slipped disc they say that is causing excruciating pain down arm and into hand. Back of neck and since physio back now also v sore. Plus feel exhausted since physio.

I'm on 20mg. They can't remove due to tumours sharing the same blood supply as my kidneys. Only option is to shrink them with drugs or embolise, but already had three failed attempts at that. Biggest tumour is 13cm, twice the size of my kidney.

Today I had fanny physio for my pain. Pelvic floor physio, that is, because my chronically tight muscles have chartered new territory. I paid a lot of my own money to squeeze a stranger's finger with my vagina. A very pleasant and kind stranger, thankfully...

@AdditionalCharacter

I'm on 20mg. They can't remove due to tumours sharing the same blood supply as my kidneys. Only option is to shrink them with drugs or embolise, but already had three failed attempts at that. Biggest tumour is 13cm, twice the size of my kidney.

13cm!! Ouch do you feel like you are going to explode?

Bloody hell, @AdditionalCharacter. I hope you find relief soon.

@cansu - I was prescribed pregabalin for my nerve pain. Worth asking doctor for other ideas... Amitriptyline works for some but really doesn't for others.

cansu I can't take amitryptaline either, after fractured vertebrae I found out I couldn't take a lot of painkillers. Would diazepam work?

Akire botox for the jaw should last 3 - 6 months, after which it's possible I'd keep needing it...or it's possible the jaw will learn to behave. But you do hear of people who have permanent damage to their faces...it worries me.

Is it really bad to take codeine a few days a month, say 2 a day? I must admit, I'm a great believer in quality of life now but I also don't want to destroy my stomach. It's the big work days I'd really need it.