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

I slept from 2-630 the weather broke here so that didn’t help my head as storm. So feeling awful and shaky today. But today’s the day wheelchair man is coming. So had set alarm and be up ready for 8 but could be 5. Annoys me no end when people could need carers get them up at 9 or 10 and they can’t tell you the night before where you are roughly on the list.

The back wheel also making loud cracking sound that made me call them on 2nd aug but they said “was fine” so only replacing front wheels today. So Sod’s law they will look baffled when I point out it’s still sounding like stop any moment. I will pay hell if have wait another 5-6 weeks for another part.

Good luck with GP fighting and hospitals today

[quote sweetkitty]@Akire been sleeping on and off it’s 28 degrees here I’m in Scotland it’s September I don’t like to take anymore than 4 dihydrocodeine/ibuprofen a day as 1) the ibuprofen will wreck havoc with my stomach and 2) I’m only “allowed” 56 at a time so that’s a fortnights supply, it’s such a hassle. Down to the GP surgery fill in a form, 2 days later to the chemists pick up prescription every 2 weeks.

Oh I have fibromyalgia. Raynauds, chronic migraines and sciatica. I’m so fortunate in that I can still work with some modifications.[/quote]
@sweetkitty may be worth checking if your GP surgery has an online offering.

I'm not 100% sure if you get this in Scotland but I have an online account with my GP surgery plus the NHS app where I can request my repeat prescriptions. Then I use a pharmacy that delivers my prescriptions for free. So usually I have them at my door within 24 hours with no messing around!

Yes they were saying this morning that Scotland had its hottest September day in 115 years! I'm glad it's dropped a bit now though.

My guts have been destroyed by painkillers, from codeine to NSAIDs.

Abdominal pain is now one of my worst pains. I honestly thought I was having gallbladder attacks but scans didn't show anything apparently. So I've put myself on a restrictive diet for IBS & gallbladder (just in case). But I need to sort my pain relief out and my new GP is weirdly obstructive and brittle about, well, every suggestion really.

She even stopped my amitriptyline which I could have used more of, so I could use less codeine & NSAIDs. So Rheumatologist has written to her - which she'll no doubt take great offence at.

@Akire I'm keeping everything crossed for a successful wheelchair day!!

@SpindleWhorl

My guts have been destroyed by painkillers, from codeine to NSAIDs.

Abdominal pain is now one of my worst pains. I honestly thought I was having gallbladder attacks but scans didn't show anything apparently. So I've put myself on a restrictive diet for IBS & gallbladder (just in case). But I need to sort my pain relief out and my new GP is weirdly obstructive and brittle about, well, every suggestion really.

She even stopped my amitriptyline which I could have used more of, so I could use less codeine & NSAIDs. So Rheumatologist has written to her - which she'll no doubt take great offence at.

That’s interesting had chronic stomach pain 18min had test camera down stomach fine, no ulcer no gallbladder. But still no resolve I do take codine a lot as only pain killer I can get. Would it be hurting intestines or so you only mean stomach lining?

Giving up Wheat and Diary more or less doing FODMAP but few foods like apples apparently not safe so maybe from Monday really strict see if helps.

[quote cricketmum84]@Akire I'm keeping everything crossed for a successful wheelchair day!! [/quote]
Thank you though feel quite anxious thought going out again. Body is well out shape as been spending 23.5h a day in bed instead of hour in chair and rest in bed. It’s going hurt like hell!

@Akire, wishing you well for your wheels!

My problem with the painkillers is that the codeine in Zapain is probably causing chronic constipation and I'm getting painfully impacted. The NSAIDs are irritating my guts, even with Omeprazole (which my GP* rations like it's gold dust).

The whole thing appears to have triggered IBS in the form of pain, distention, bloating and nausea. So I'm 5 weeks a low fat, low FODMAP diet, plus I've tried to up my good gut bacteria, enzymes, and B12.

I make lists. I love researching this stuff and making lists. It's a kind of hobby now!

*I could do a whole Guardian column on my new GP.

Re my GP, who I'm sure is much loved by her friends and family, the issue seems to be her artificial curtness. I mean, no-one is really that rude, surely? (Not just to me - she had DSD in tears at work a couple of days ago.)

Possibly she thinks her patients are a bunch of layabouts who just need to pull themselves together or be back in the workhouse with some healthy gruel. Patient notes, NICE guidelines and medication records are for wimps in her world - all one needs is a brusque, 'what's wrong with you now ?' and much sighing and snapping from her end of the phone.

My last call I had with her I felt like I was managing a therapy session - with me as the therapist - to get her to agree to do anything. She's so damn brittle.

I find the best GPs and consultants are the ones who are a bit mellow. My current dermatology consultant and my previous GP are, for example. Nice listening atmosphere, both ways. It's much more efficient and effective that way, long term.

I was on reflex meds for 12years plus no problem. But when pain started they seemed make it worse. So stop few weeks then take again would get hot stabbing burning pain around belly button. Apparently long term use can cause minor stomach pain. Have tried 2 other including Omeprozene and same thing. So back glug going half bottle Gaviscon a week.

Also NSAIDs make my tinnitus worse! So a perfect storm of medication-induced illnesses, really.

I need my GP to help me get on top of it in a manageable way, via tapering and replacement, because I'm always going to have to treat severe arthritic pain somehow; and not just cut off all my meds before I've even spoken to her or finished a sentence.

I just wish she'd listen.

I get better medical advice on here, tbh. But she has the power over prescriptions.

Bad day, again, pain not controlled, took Tramadol, paracetamol and 5ml of Oramorph an hour apart. May as well have taken smarties and then my stoma leaked. Getting dressed hurts, getting washed again, more so.

@Gilead

Bad day, again, pain not controlled, took Tramadol, paracetamol and 5ml of Oramorph an hour apart. May as well have taken smarties and then my stoma leaked. Getting dressed hurts, getting washed again, more so.

Sends nice cup of tea. Are you all cleaned and dressed now?

Just back from hospital. God it was hot in there! Felt a bit smug not having to pay for parking with my precious blue badge 😂 well there's got be some benefits from your legs not working!

I have shiny new carbon fibre splints to help me walk. So that means I am officially half woman half F1 car!

@Gilead some days are just shitty.
@cricketmum84 being part F1 car sounds cool, but I must insist you now make screeching sound effects whenever you turn a corner

[quote HerRoyalRisesAgain]@Gilead some days are just shitty.
@cricketmum84 being part F1 car sounds cool, but I must insist you now make screeching sound effects whenever you turn a corner [/quote]
Haha I promise I will!

No more speed though... I learned my lesson a little while ago when I pretended to be Lewis Hamilton and tried to do do-nuts at the top speed on my mobility scooter. Let's just say they aren't meant to do that 😂

i too insist on screeching sounds round corners!! i have wrist splints because my wrists are so weak and pop out every chance they get and i make motorbike noises soemtimes just to cheer myself up

Thank you folks. Rheumatologist is ringing today so hopefully discuss medication etc.
Operations for hips not liking great though, I have EDS and the combination of that and the stoma operation has left me with meralgia paraesthetica and the damage to the sciatic nerve. What fun!
Having said that, despite this morning’s leak, the stoma has been a life changer and although it was an emergency operation in the end, it was worth it.

@Akire < gratefully accepts tea>💐

Only 3h left for man to arrive!! Feel so awful even postman asked me if I was ok and half my face was covered with a mask! Just get really shaky and weak and feel like going throw up. Even if they do fix it be going no where today!

Spoken to rheumatologist, she is putting me on amitryptyline and sending me for a bone density scan at which point, dependent on outcome we may increase the steroids. Felt nice that somebody listened.

Positive steps for you well done. Still willing wheelchair man to arrive!

🤞🏻 come on mr wheelchair man!!! 🤞🏻

@Gilead glad you feel listened to.

@Akire hope the wheelchair man hurries up

Thanks guys after 5 weeks & 4 days it feels endless. Surely emergencies first then those waited the longest!

Akire Keeping fingers crossed for you!

Struggling a little today, neck is bad which means tension headache all day. I know improving my posture would help but the hypermobility means that's really difficult to achieve, and I've got years and years of trying to compensate for misaligned joints to undo in order to improve my posture.

The first physio I saw when my joints started going wrong told me I had perfect posture, the lady one I saw told me my posture was dreadful and entirely to blame for my pain (he refused to believe I was hypermobile despite having a diagnosis by then).

On a positive note though, I've managed the walk to and from the kids new school every day this week. It might not be a long walk, 20-30 minute round trip each time, but it's more than I could have done a year ago. In fact this time last year I was only having to do a 3-4 minute walk to the kids school and back, and would be in agony after. So huge achievement!