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

Thanks @Akire. It has been tough. I have always been v active - running, ultra challenges, gym.... I also have 3 dcs so have to be pretty physical at home too.

Am still working - just 2 days a week. Am ok at work, but having not slept properly for so long, I am just so tired. I almost fell asleep at work yesterday!!!!

Hoping that neurosurgeon and an mri will shed some light on what is causing it.

Sounds like you are doing amazingly. The back logically should be easy to tell what’s wrong but very complicated to get right diagnoses. Hopefully you won’t have wait to much longer for MRI and a magic fix

Do you have support with the kids? You never know how often you bend down until your back starts playing up.

Had a mega migraine yesterday. Since I started having acupuncture. they're not as painful, but still as intense IYSWIM? I really can't be arsed today, I'm still in bed with the cat on my knee.
Good news is that the doc has upped my pregablin. Bad news is that my bladder is playing up and so I'm on antibiotics for that. My friend said last night that's a lot to deal with... I don't necessarily always think of it like that but yep, this morning I'm feeling she's right!
Also PIP have still not got back to me re assessment. Their backlog must be massive.

@blossomtree323

Had a mega migraine yesterday. Since I started having acupuncture. they're not as painful, but still as intense IYSWIM? I really can't be arsed today, I'm still in bed with the cat on my knee. Good news is that the doc has upped my pregablin. Bad news is that my bladder is playing up and so I'm on antibiotics for that. My friend said last night that's a lot to deal with... I don't necessarily always think of it like that but yep, this morning I'm feeling she's right! Also PIP have still not got back to me re assessment. Their backlog must be massive.

I've got my assessment on the 29th. I applied in June!!

Migraines are the pits and a UTI to boot I think staying in bed is safest place!

Collect new meds she has given me 100 30mg:/500 codeine paracetamol but I told her I try take lowest dose so if can manage on 15mg I do. Was cutting in half previous ones as no paracetamol but now end up 15mg and 250g paracetamol so can only add one 500.

The maths gets complicated when tired and in pain. I know I can but the 8/500 over counter but bloody murder getting them over the these are only 3 days use malarkey and if buy more than one box month look like going ban you. Very stressful! I told Gp this. I have obvious disabilities so they don’t believe you when say not taking anything else look like drug junkie doing rounds.

Not sure if ask for just 30mg pills and try “return” these but then GP before said just buy them but even after chat with pharmacy staff they say I can’t buy them well only one box as 3 days only hands are tied. Or just try cutting a parcetomol into 4s. Maybe need one those tiny scales that drug addicts use

Managed go out met friends but she had keep reminding me how much moaning and groaning in pain i do. Must sound odd other people or worse like having some secret orgasm in public lol Luckily good friend and sticks by me

Ok I take it back GP hasn’t listened at all! I looked in top meds bag when collect box said 100. Great I thought. Just opened and they done the Scribble side of box and only actually given me 30.

With the label saying take 1-2 up to 4 times a day. So could in theory take 8 a day. So given me grand total of 4 days worth. Not that need that much but so frustrating. I understand if said can only give x number of days in one go but I specially said I was away xmas 2-3 weeks miles away so even if mess around getting emails and e consults and appointments they will only send to local pharmacy which be no good.

I asked if anything else at all I can take and apparently not. Had tramadol before which still left me in pain but you felt drunk but made me sick.

I don’t really want take codeine long term but not sure what else can do. Plus researching long term effects as only used them max 7-10 days time before and you are not supposed drink at all on them. They should made this clear at GP and Pharmacy. If you get some antibiotics you really can’t drink and make point telling you. Yet rely on you read massive tiny print leaflet.

One website said have leave 15 hours between a dose! Hard find detail for low levels as all info is full of banners of “seek help for your drink or alcohol addiction!” No thanks just want find facts. Obviously if you take 8 tablets a day at 240mg in 24hours that’s different taken 15mg over the day.

What else could I take? Is there really nothing else at all? Are all other pain killers up a level and unless I’m screaming don’t qualify? So over Xmas have spend the day in pain if want a drink in the evening. Have been having odd drink hope using before as total unaware and not noticed any side effects but now I know I’m really alarmed. Dotn have many pleasures in life the odd in evening is one of them.

Sorry for long rant

@Akire sorry about this. 4 days worth is not really going to go very far.

Turns out I am opioid resistant! I tried taking 30mg codeine at night time and it made no difference at all! So weird - I didn't even know that was a thing..... anyone else found that codeine makes no difference?

I might have to start looking at nerve specific medication. That sounds fun.

In answer to your earlier question @Akire , I don't have much help with the dcs, no. DH works stupidly long hours. Thankfully 2 of them are teens and only one of them is a toddler. The pain is making me horribly irritable though. I have no patience at all. I'm also a teacher, so when I'm at work, that's pretty physical too!

Thanks luckily I try manage on 15-45mg a day but usually more like 30mg so will last a month but they then tell you the “we are very busy over Xmas make sure you ask repeats in time” but need new apt before Xmas. Which be like plucking whatever the phrase is! Have to try ration then and only take when really can’t cope. Plenty people on here same battles with repeats which they really need but still feels up hill battle every time.

Teacher oh dear that is hard work. Hope work have done assessment as to how can help. I know not huge amounts but decent chair and desk goes along way.

Screams…. That is all!

Hello all, I've been lurking for a while and thought I'd join in. I'm 31 and I have type 3/hypermobile EDS, had awful PGP in pregnancy and have been left with increasing back pain as my baby grows. I saw a private pain specialist (I'm in Ireland) and he did a few investigations (I'm currently on gabapentin and cocodamol, still in a lot of pain).

I'm a doctor by profession but in a vastly different speciality and currently on maternity leave. I'll admit I've neglected my health for years because I feel strangely awkward being a patient (I know everyone hates it, just giving context for my dislike of it, I know I've been a bit irresponsible)

Anyway, it turns out I have a bulging disc in contact with my L5 nerve root, Modic type 1 changes, cam deformity of both hips, with a labral tear on the right.

Hopefully in for a racz procedure next week, Covid situation in the hospital dependent.

Also just found out I have h pylori and I'm on triple therapy for that. Hopefully I'll tolerate NSAIDs a bit better afterwards. They're currently a no go.
Sorry for the essay. Nice to meet you all!

Also, you all seem lovely and seem to be dealing with so much!

Akire.. . Could you ask to see the chronic pain team? I can't take any of the codeine/morphine/tramadol opioids. They put me on 'cox', painkillers, and I know that I can take fentanyl if have extreme pain like post - op. Also tens machine. It's a nuicance with stickers cos not always have painwhere you can stick a sticker on your body, but can have a pen. That's moveable and works, I always have it on me.

Welcome @BackInBits that all sounds horrible. Hopefully you can get some relief soon.

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Welcome @BackInBits I can well believe a doctor hates being a patient no fun for anyone any time! Has baby arrived yet? It’s good they finally know what’s happening with your body hope the operation goes ahead and no more delays.

I’ve used TENS machine years different pain but because it’s pelvic it’s hard place though sometimes use on my bottom and it zaps it’s way up. But I find because I need it on high level that the muscles around where I’ve placed also get zapped and feel sore for days. So be up just hurting in a different way as pelvic floor and pelvis has so many muscles and nerve areas. Probable will have use more as had bad stomach pain from codeine yesterday this is longest I’ve used without break and would of course be my luck.

It’s hard every time I go they are so slow offer to refer me or any support and I’m very clear about level of pain and affect on my life. Feel like almost begging already. Plus I’ve seen about 4 doctors over 7/8 visits over last 2 years so not like it’s just one being unhelpful. No one mentioned pain clinic on any other means of support.

What’s a tens pen? I’m intrigued!

It's a tens, but in a pen, so you target it where it needs to go. Can get battery or manual. Manual, have to press button lots so dexterity wise, maybe battery better. I got it as pain in hip area, patches dont stick there.

Couldn't work out how to do a link. Where are the teenagers where you need them to show tech stuff ey.

There's offers on both at the moment, but normally they're 30-50 quid ish depending which

Thanks for info I did many years ago but an acupuncture pain free (ha) pen but was just like stabbing self with ball point pen.

So it’s same zap from tens? Or is it like acupuncture pen and like clicks?

@Daimyum

Couldn't work out how to do a link. Where are the teenagers where you need them to show tech stuff ey.

Oh my mum has one of these! I might try hers and see if it helps.

@HerRoyalWitchyness

You should get out there! You never know who you may find. I have so much wrong with me. (Arthritis, EDS, fibro, I hear voices and hallucinate, severe depression, anxiety, PTSD) but this guy isn't scared off by any of those things he accepts me as I am and understands that things are difficult for me

Have you had your date yet??

Hi all and hope you're managing to get some rest this weekend. I've not been on for a few days, too many hospital appts and DDs birthday.

@Daimyum too bloody right that Neuro should have apologised. That first appointment with him was disgraceful. Still, I know it's probably better to let it go and to feel grateful for finally being taken seriously. I hope you get good care and a good support plan once you know exactly what's what.

@BackInBits hello to you. I was a Sports Therapist for years and am a terrible patient. Especially when I don't get good care and get told stuff I know is rubbish / get fobbed off. My GP used to say "Never be your own practitioner" Aye, fair point. But it's shit when nobody else steps up either some times.

@SpookyScarySkeletons and @blossomtree323 I applied for PIP in June and have my telephone assessment on Tuesday so reckon it's taking about 6 months currently. Good luck both!

@ndo4000 That sounds tough, hopefully you get some answers from MRI and can move on with an effective treatment plan.

Re: opiates. I'm generally intolerant of most stuff unfortunately. I take codeine, but it only gives a little relief. Have used Tens before and couldn't get any relief at all. Physio was saying I should try one again. Aye, if you provide one on loan. I'm not spending £50 on summat if it doesn't work. Dunno where the original one I had went. Was over 10 yrs ago. I'm wondering about the pen, but again I'd like to try before I buy. Might mention at next weeks Physio visit.

@Akire I wouldn't worry too much about the codeine and alcohol thing. I've taken it for years and haven't noticed that it interferes with it's effectiveness when I have an occasional vodka and tonic. It certainly has never been mentioned to me either by any healthcare professionals either.

Ooh yes and don't forget to update us on the date @HerRoyalWitchyness

Akire.. I use it like a tens. It zapps you as you click it where the pain is. But, it can be used as accupuncture too, there's a book with it with all the pressure points and instructions. No actual needle though

Thanks @RainbowZebraWarrior that’s good to know I don’t feel any different either but website were alarming. I know I have drink in evening to help with pain also and have some release from the daily slog. I try and keep it to under 14 units a week so 1-2 a night. If I wasn’t in so much pain I probable wouldn’t drink at all but had to be something in your miserable day look forward to.

Popped out shops and nearly cried in boots when nice cashier asked how I was as I held counter in pain. Pelvic bowel pain seems hurt less overall constant but getting really sharp peaks of pain which is new. I’m starting think more bowel issue because nothing else there it can be as lower down than vulva but GP was totally perplexed. Just my luck I wait 6-12m or however see gynaecologist and she say that’s nothing to do with me. Im happy finally been referred but I’m so miserable and seems forever before get answers never mind a solution if there even is one. Still keep crying all time suppose is nice perimenapusal shit as well.
Goodness I can’t recommend not being a woman enough

Thanks @Daimyum will order the battery one now. Worth a go suppose can zap my pelvic area under my hand bag and no one can tell.