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!

Ah, I spoke too soon. Nice GP has been derailed by the Medicines Manager. When I opened the bag there was a note in with my tramadol stating "This medication is due for review. Please call the Medicines Management line as soon as possible". Err, isn't speaking to an actual doctor sufficient review then? I know I'm going to get the "well opiates don't actually work for chronic pain" spiel again. I'm tempted to suggest they drop by here any night at about 3am and I will happily demonstrate what happens if I don't take anything". The world's gone mad. Your not supposed to take opiates of any kind, they want everyone off gabapentin and pregabalin now too it seems. I'm intolerant of anti inflammatories so that leaves paracetamol.....yay! Bearing in mind that the last orthopaedic surgeon I saw was talking about the joints in my foot and said "well, what's left of them..." Sure. Paracetamol will fix that.

@MrsAvocet

Ah, I spoke too soon. Nice GP has been derailed by the Medicines Manager. When I opened the bag there was a note in with my tramadol stating "This medication is due for review. Please call the Medicines Management line as soon as possible". Err, isn't speaking to an actual doctor sufficient review then? I know I'm going to get the "well opiates don't actually work for chronic pain" spiel again. I'm tempted to suggest they drop by here any night at about 3am and I will happily demonstrate what happens if I don't take anything". The world's gone mad. Your not supposed to take opiates of any kind, they want everyone off gabapentin and pregabalin now too it seems. I'm intolerant of anti inflammatories so that leaves paracetamol.....yay! Bearing in mind that the last orthopaedic surgeon I saw was talking about the joints in my foot and said "well, what's left of them..." Sure. Paracetamol will fix that.

They’re fucking ridiculous. There’s one GP in my practice who calls to grill me every few months, and randomly extends the time between prescriptions to some arbitrary amount.

Last time she said I need to reduce them further, I said well what am i supposed to do about the pain that used to leave me bed bound now I have two disabled kids. She said “oh no, I’m not suggesting you replace it with something else” - so what are you suggesting then? I’m so sick of getting to the end of every repeat period rationing my meds - have been on a tiny amount for a week despite unbearable pain, was so relieved when they got issued today so I could take a proper dose.

At one point I got it to stop by writing to the practice manager and all GPs asking why the doctors were being so obstructive when I have been responsible with my medications for many years, have never overdosed or had any issues, and why were they treating me without any care for the fact that I’m in constant pain and doing the best I can. After that things calmed down for a while but it’s bad again now.

Seriously considering moving to a new practice.

Glad to hear some positive news from @MrsAvocet and @SinkGirl !

Well I totally overdid it yesterday so am currently laying in bed considering if I need a wee enough to try getting to the bathroom... I got a bit overconfident with my Walker and did lots of laps of the living room to try strengthen my leg muscles Cos they are literally wasting away, my lower legs and ankles are just so thin now. Then I decided it would be fun to practice stairs so I went up and down them a few times (haven't been able to walk down the stairs since December, usually come down on my bum).

I also managed to stand in the kitchen for long enough to prepare 2 meals alone! DH has done all the cooking since this all started so that was a really huge moment for me.

I'm actually starting to believe that I might come out the other side of this at some point!

Oh sorry @MrsAvocet just seen your latest update, not as positive :(

Oh no sorry about update. This is why I have stress everyone need order new meds case bumped things off this time.

Even if taking long term pain killers significantly reduced your life expectancy. It’s something you need decide. Most people would accept even huge risks for living less pain free. When it’s for random reasons like “we don’t like patients to be on long term” what does that mean?

Do wonder if they think we are all addicts and buying street drugs to top up over counter stuff. Should we be offering blood or hair tests to prove we are not

If offered loads of care instead that would be something but there is nothing.

In a way I'm glad painkillers do nothing for me, it at least saves me having to argue with doctors about it. Though they were threatening to take me off the pill because of my weight, and I had to point out that it was the only thing stopping my monthly migraines, and leveled out my joint pain. It shouldn't be such a battle to get medication that helps.

MrsA sorry what a nightmare. DH is finding similar with the pain meds. He’s treated like he’s just after drugs TBH. I’d love to see them try and handle the pain he does . He wrote a message to them last night to arrange a discussion about it - I only realised when he checked how to spell “intolerable” :(

I mostly find that fatigue and dizziness are a problem more than pain these days, so thankfully I have not had difficulties getting pain meds when I need them.

I’ve barely left the house lately. Really need to try and get outside. I must get back to taking my vitamins too, I’ve been reminded my ridiculously heavy period this month might indicate that my iron is low again.

I’m amazed and relieved - just got my PIP letter and they’ve renewed it at the same rate for four more years, not even an assessment needed. Can’t believe it. I think it was this thread (or one of the other chronic pain ones anyway) where I had some advice so thank you thank you thank you!

I was really expecting to lose the mobility element - I had the bare minimum points last time and I made it clear that I can walk much further sometimes - I think the advice to write about average/good/bad days at the back of the form must have really helped, as I could make it clear that most days I can’t do that.

Great news SingToTheSky Its great to see the system working well and fairly for once.
I've not rung the Medicines Manager yet. I've got enough tablets to last me for a while and I am so angry with them today that I know if I ring I will be rude which won't help my case. So I will leave it til I am feeling calmer. Last time I gad to go through this it was a pharmacy assistant who was dealing with me, not even a qualified pharmacist. What makes them think that they know what I shoukd be taking better than my GP who knows me and has access to my entire medical history?
And to be frank, I don't care if I am dependent on painkillers. Since there doesn't seem to be any cure for my painful condition what's the issue with taking drugs that make life manageable? Nobody tells an asthmatic that they shouldn't use an inhaler when they are breathless or tells a diabetic off for "being dependent " on insulin do they? What's the difference? We're just the same as other people who have lifelong health conditions that can be managed but not cured. More or less everyone in that position depends on some kind of medication to keep them going. Why is it such a stigma if that medication is pain relief ? Yes, obviously nobody should take more medication than they need, but surely when like most of us, you have been assessed as having a long term pain problem and other agencies have acknowledged that you should be able to get the meds you need? The pensions people have accepted the medical evidence that I am permanently unfit for work and granted me early retirement, by GP recognises that I am managing my pain sensibly and not taking excessive amounts of drugs, but this faceless "Medicines Manager" (or is it a computer?) seems to have the power of veto. Why ?

Little less pained today, hurrah! Have walked a few miles and I’ve a private physio appointment booked and an NHS physio triage phone call booked.

Sorry for absence, hope everyone is getting on well and as pain free as possible.

I started back at work the beginning of April after 12 weeks of shielding. I work with profoundly disabled young adults, and its back breaking without chronic pain thrown in. I was in so much pain after the first few shifts, I couldn't sleep comfortably and was taking more codeine than I usually do. It hasn't been as bad this week.

Does anyone have an adjustable bed? I am seriously thinking of investing in one as I sleep better sleeping sitting up, but it's not great using the pillow I have. As my pain is likely to be long term, it's an investment I think will be worthwhile.

For anyone with back issues, what are you prescribed when you have a flare up of severe muscle spasms and can’t move?

They prescribe me diazepam, probably 3x a year. I get 21x 2mg tablets. I have to take 4 tablets for it to have any effect, so it’s not even two days worth and they still treat me like I’m asking for heroin.

I always say to them - I don’t specifically want diazepam, it doesn’t make me drowsy or high anyway, I just want something that will help me get mobile again. But they say there isn’t anything else and prescribe the diazepam.

Is there something else that works similarly but isn’t viewed in the same way? Maybe even something they’d prescribe so I have it here ready the next time my back goes?

Hi all, can I join?

I suffer from disc bulges and a dodgy pelvis. However currently the bulge is pressing on nerves in my leg and my gosh it's painful ☹️. I can relate to so much on here. I'm pretty much used to my back pain and manage that with codeine, diazepam and a Chiro but I'm not used to this and it's knocked me sideways. @SinkGirl, I'm not sure there is anything else that relaxes the muscles in this way. It's so frustrating. I'm on Gabapentin but ringing Doc today in desperation as nothing is touching the pain really and I hate taking so much codeine (30/500)

@SinkGirl can completely relate-why on Earth they think you would be abusing diazepam in this way is beyond me. I just got a frosty reception from the GP practice, it's like they are put out by people that are sick or in pain. God knows what they expected when they took the job. (Disclaimer: there are plenty of great and patient staff out there)

Yes, I’m sure my six days a year of diazepam is turning me into a raging addict 🙄

I know that other muscle relaxants exist so I’m a bit baffled why that’s the only thing they prescribe if they don’t like prescribing it. Maybe all muscle relaxants have the same effect, but aside from feeling a bit dizzy for the first hour they don’t make me feel anything. Not sure what I’m supposed to be getting out of it 😂

@SinkGirl There are other benzodiazepines they could use but all will carry the same cautions. I'm not sure if there are drugs that do the same thing that belong to a different group though? I agree-it makes me a bit more tired at the end of the day but nothing else works when my back goes into spasm and oh my god that hurts. My current leg pain is bad but the time my back went into spasm completely was something else-I couldn't talk I was in that much pain. I couldn't do anything. It was like being in labour

@SingToTheSky

I’m amazed and relieved - just got my PIP letter and they’ve renewed it at the same rate for four more years, not even an assessment needed. Can’t believe it. I think it was this thread (or one of the other chronic pain ones anyway) where I had some advice so thank you thank you thank you!

I was really expecting to lose the mobility element - I had the bare minimum points last time and I made it clear that I can walk much further sometimes - I think the advice to write about average/good/bad days at the back of the form must have really helped, as I could make it clear that most days I can’t do that.

That’s amazing! I know how much of a struggle it was to fill it in. Maybe backload of covid helped and they waved it through! Who cares phew

@MrsAvocet

Great news SingToTheSky Its great to see the system working well and fairly for once. I've not rung the Medicines Manager yet. I've got enough tablets to last me for a while and I am so angry with them today that I know if I ring I will be rude which won't help my case. So I will leave it til I am feeling calmer. Last time I gad to go through this it was a pharmacy assistant who was dealing with me, not even a qualified pharmacist. What makes them think that they know what I shoukd be taking better than my GP who knows me and has access to my entire medical history? And to be frank, I don't care if I am dependent on painkillers. Since there doesn't seem to be any cure for my painful condition what's the issue with taking drugs that make life manageable? Nobody tells an asthmatic that they shouldn't use an inhaler when they are breathless or tells a diabetic off for "being dependent " on insulin do they? What's the difference? We're just the same as other people who have lifelong health conditions that can be managed but not cured. More or less everyone in that position depends on some kind of medication to keep them going. Why is it such a stigma if that medication is pain relief ? Yes, obviously nobody should take more medication than they need, but surely when like most of us, you have been assessed as having a long term pain problem and other agencies have acknowledged that you should be able to get the meds you need? The pensions people have accepted the medical evidence that I am permanently unfit for work and granted me early retirement, by GP recognises that I am managing my pain sensibly and not taking excessive amounts of drugs, but this faceless "Medicines Manager" (or is it a computer?) seems to have the power of veto. Why ?

That is one of the best written summary’s I’ve seen @MrsAvocet. No one tells a patient when finally diagnosed with a long term pain condition, right well it’s long term so we can’t help with pain relief. There are drugs for it but we don’t give them long term.

No you get strung along for years getting more and more stressed when begging for repeats. They should be honest at the start.

Surely being in constant pain also ruins heart blood pressure, nerves system, Adrenaline and other major systems anyway. More than side effects of drugs. We see treated like children.

Hi @WinoLino welcome to the board. Hope your GP does something!

Just wanted to share a bit of good news, I've found a workout video on YouTube I can do, it's low impact so not too stressful for my joints, and kind of fun (as fun as exercise can be 😂). I can't do all the things in the video yet, don't have the strength in my muscles to keep up, but hopefully I can gradually improve that. It's been interesting because usually I'd be in agony for days after, but I've done it 2 days in a row and am only slightly more sore than usual. So hopefully it's sustainable.

Ooh that’s great medusa I haven’t exercised in ages. Well done for doing it! What video is it?

It's this dance one -

I think the underlying problem @Akire is that basically a lot of HCPs don't believe us.
We're either mad or we're bad. Or maybe a bit of both.
We're so often in a Catch 22 position. Use your drugs up too soon and you're obviously an addict, or you're selling them. Take the minimum and stretch them out for as long as possible and you obviously don't really need them at all.
Get as active as you can and that proves there's nothing really wrong with you. Don't manage much activity and well that just goes to show that you don't actually want to get better and you're not trying hard enough.
Then I have the extra cause of doubt. My pain results from injuries sustained in an accident and there's still a legal case ongoing. So I am obviously making it all up for the money. What other reason could there possibly be? 🙄

You are spot on again. We are doing pain all wrong wrong wrong! On good news (so far) my period isn’t killing me yet. Half way through so could speaking to soon but lovely surprise!

Thank you @Akire actually she was really helpful, and very sympathetic, said she understood how painful it is but I’m not on enough pain relief. She’s increased the Gabapentin and told me I have to take the naproxen religiously, not missing any doses at all. There are exercises I need to be doing and I’ve got a physio apt on the 4th May. She said if no better in 6 weeks then will refer me for the epidural or to look at other options