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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think there must be painkilling solutions out there

65 replies

Acrackineverything · 08/02/2022 11:22

For osteoarthritis? Went to GP recently and mentioned that my arthritis pain had got worse. My mum had it and was crippled with pain. His reply was that things haven't really changed. Suggested paracetamol, which doesn't actually work for me, and prescribed Vimovo which takes the edge off but takes hours to kick in. The best solution for me is actually a hot water bottle held on whichever part hurts the most. But has anyone out there got any suggestions? I can put up with a certain amount of pain but I'm starting like I'm 90 instead of 60(ish)!

OP posts:
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peakygold · 03/04/2024 11:18

You have to be so careful with pain relief because if you keep increasing doses and strength, the doctors have nowhere to go when you have surgery or, God forbid, a serious accident. Better to try TENS, or topical meds, rather than keep swallowing tablets.

LINDAHOAD · 03/04/2024 11:12

yes pain management class waste of time - picture yourself on a dessert island - golden sands etc. and you can rise above it all. complete waste of time and the nhs money.

knee replacement is the end journey

Marmelace · 11/02/2022 13:08

@LakieLady

I was prescribed gabapentin for OA and it helped a lot, but then started to give me confusion and memory issues, so I had to stop taking it.

I had a partial knee replacement 13 weeks ago. My knee has improved, but I still have pain and can't kneel, and apparently only 30% of patients are ever able to kneel after a partial replacement. Arthroscopy on my shoulder was life changing though, and it's still brilliant 5 years later.

Sadly, nothing seems to help the pain in my hands, which sometimes feel like they'r on fire, they're so hot. My knuckles are starting to look gnarly, too.

That's really interesting about the gabapentin, I've been putting my constant fuzzy head and forgetfulness down to the co-codamol.
Goooglebox · 11/02/2022 13:08

GPs are ridiculously patchy in their knowledge. I say this as a member of a family full of them! Ask for a referral to a pain management clinic.

Marmelace · 11/02/2022 13:05

I have duloxetine, gabapentin and 15mg co-codamol for neuropathy. Still in bad pain though.

Acrackineverything · 11/02/2022 13:01

So many interesting replies here, thank you to everyone who took the time. I'm planning to get a pen and paper and write down every recommendation that I haven't already tried. I have had blood tests a couple of times over the years for arthritis and been told I haven't got RA but given my deformed knuckles that its "most likely" OA. For which paracetamol is the first recommendation.

I've tried paracetamol and would say it hasn't worked, but maybe I need to take it regularly for a month and maybe it'll kick in? I will admit if something doesn't start to work after a fortnight I lose faith in it.

I'm on holiday at the moment so hoping that a week of hot sunshine will help. Finding my feet so painful so maybe not.

DH also suffers, has just been told by a specialist that he has
no cartilage left in his ankles. Was xrayed by the hospital a year ago and told there was no sign of arthritis. Specialist xrayed him standing up and said it doesn't show up if the xray is taken lying down! He finds Vimovo great for pain relief, I find it not much better than paracetamol.

OP posts:
lborgia · 11/02/2022 09:46

@chocolateorangeinhaler - that's absolute rubbish - amitriptyline is not highly addictive! Please don't alarm people like that.

AuntieMaggie · 11/02/2022 09:13

@30SynchroSwimmer my hip pain was worse during certain times of my period cycle and I was told this was normal. I had the coil fitted a while ago for heavy periods and my hip has been much better!

sueelleker · 11/02/2022 08:39

@MadeForThis

My dad used Flexiseq cream. He went from struggling to walk to being much more comfortable.
Funny thing-my orthopaedic consultant recommended it, and said a lot of her patients used it; but it didn't do a thing for me.
Darbs76 · 10/02/2022 20:31

Might be worth a referral to a pain team. I have had chronic pancreatitis for 11yrs with means constant pain. I am on a slow release pain med that I take every 12hrs which gives me constant level of pain relief, so I’m not chasing the pain. I also take an immediate release pain med 3 times a day. I have to take that pain relief daily. Any missed dose I know about it. I don’t lie in as I wake up in much worse pain and spend hours chasing the pain so it’s not worth it. Worth speaking to pain specialists as not all GP’s are great at prescribing the right type of pain relief

MadeForThis · 10/02/2022 20:28

My dad used Flexiseq cream. He went from struggling to walk to being much more comfortable.

Sideswiped · 10/02/2022 20:25

@NeverDropYourMooncup, Thanks for you - it sounds like you're dealing with a lot, but it sounds like you have an autoimmune-based arthritis? I know methotrexate can be used for RA and you have it for PSA.
OP asked about osteoarthritis, which biologics aren't used for.

NeverDropYourMooncup · 10/02/2022 20:20

@Poetnojo

It won't be to everyone's liking but I have been looking into the carnivore diet when researching ways to help my mother with her debilitating RA and it seems to be life changing in regards to many auto immune diseases and also mental health problems. It might be worth looking into to see if you could benefit from it. I'm doing keto myself but it's closer to carnivore as I don't usually bother with veg apart from some celery or mushrooms.
Diet is not a magic cure.

If I cut out everything I've ever been told to by quacks, people whose auntie's brother's neighbour's dogwalker's sister's friend of a friend's mate who didn't have RA or PsA in the first place and random googlers, I'd be living on filtered air. I do, however, have an aspect of the autoimmune disease that means I can't have gluten, oats or dairy - but that's not a cure, it's a symptom.

NeverDropYourMooncup · 10/02/2022 20:15

@BeautifulBirds

Is methotrexate still used for arthritis pain?
It's the Gold Standard DMARD. You don't get through the NICE rules for something better that doesn't make you chuck your guts up and lose so much hair you look motheaten unless you've been on it.

As you can tell, I don't recall that stage of the pathway six fucking years with much fondness.

Biologics and steroids though - they're great. OK, if you don't wait long enough for the alcohol swab to evaporate or for the biologic to reach room temperature before you inject, Cosentyx in particular stings like a bitch/a very angry wasp that has superglue smeared on its arse so it can't fly away, plus the needle gauge is larger and the volume you're injecting is much higher, but it's the first time since I was about five that I have got to wake up in the morning and not be in pain from the moment before I open my eyes.

Intraarticular steroids are an absolutely breathtaking cunt until the local takes effect in there where you're slowly blowing out air as though you're in labour through it, mentally telling yourself DON'T MOVE DON'T MOVE FUCK DON'T MOVE (im ones are fine, though), but they work, too. Just a pity that you can't have too many of them because they can also permanently damage joints and tendons and make you so vulnerable to infection and life threatening discontinuation if you've got a cheapskate doctor who only gives you oral ones.

That's the real fucker with my PsA, though; so many buggered tendons. Just had an MRI of my hip to check that it is just more tendon buggerage and not anything else screwing over my hip/lower spine/SI joint, a scan of my shoulder where to go with the damage to the AC joint from uncontrolled inflammation, I've also got a supraspinatus tendon tear that won't heal and has to proceed to full rupture before I can have everything pulled out, fucked up permanently and they might chop off the end portion of my collarbone whilst they're at it if I'm lucky. Then there is the permanent damage to my Achilles on both sides. And the plantar fascia. And the flexor. And the other shoulder. You can replace joints once the inflammation is calmed down - there's not the same with tendons. And the back pain - they're hoping the MRI won't show signs of fusion because it's brutal and high risk surgery with poor results for many.

Oh, and let's not forget that my father dropped dead aged 54 with cardiomyopathy as a result of his being untreated. And my brother in law has terminal brain cancer as a result of the biologics he took. And his daughter had heart failure aged 37 due to inflammation affecting that rather than her joints, only diagnosed when she collapsed at work and had to have CPR all the way into resus. Other people have died due to liver damage or infection from their immune system becoming too depressed, which is why you have just so many blood tests.

So if you do take stuff, you can die early as a result of taking it. But if you don't take anything, you can die early as a result of not taking it.

Not forgetting that sometimes your immune system gets bored with just going for your joints or tendons and decides to have a go at your eyes, gums, heart, gut, skin or your brain - you can feel terrible, in tears, not sleeping, not being able to rest, have suicidal ideation, but not be actually depressed in the slightest just because the inflammation is fucking up your head. Antidepressants are dangerous then, as it's like doing a shedload of Ecstasy - they just can't help because it's inflammation, not depression. Get the disease activity down and irrespective of pain, you're absolutely fine mentally. Because it's inflammation, not depression, not pain.

But yet we still have muppets on here saying it's all arthritis/wear and tear. No, it really, really isn't. It's a systemic disease that kills and steals lives from the smallest of children and apparently healthy adults.

caprimoon · 10/02/2022 20:01

Turmeric might be worth a try, helps some.

LakieLady · 10/02/2022 19:48

I was prescribed gabapentin for OA and it helped a lot, but then started to give me confusion and memory issues, so I had to stop taking it.

I had a partial knee replacement 13 weeks ago. My knee has improved, but I still have pain and can't kneel, and apparently only 30% of patients are ever able to kneel after a partial replacement. Arthroscopy on my shoulder was life changing though, and it's still brilliant 5 years later.

Sadly, nothing seems to help the pain in my hands, which sometimes feel like they'r on fire, they're so hot. My knuckles are starting to look gnarly, too.

florentina1 · 10/02/2022 19:41

I am prescribed Naproxen. However I get the best relief from an electric shoulder blanket and a heated throw. This was recommended by a osteopathic practitioner.

I also use a rub from a company called Jones the Bones. This helps too,

SynchroSwimmer · 10/02/2022 19:30

Like others, after knee replacement and osteoarthritis, I feel paracetamol does nothing at all for me - despite this being the first line analgesia suggestion.

Ibuprofen works better for me but my GP advised against, saying that she has seen many patients taking it for a long time but who become suddenly not fine.

For me, heat definitely helps - taking (overly long / competitive!) saunas at the gym, swimming and yoga helps too, with moving fluid around the hip and shoulder joints.

Interestingly, recently starting HRT (very late at mid-60’s) has unexpectedly helped my joints and pain levels. There is some interesting reading on the Dr Louse Newson/Balance app - in particular in a recent podcast there was mention of an orthopaedic surgeon who was puzzled that his wife couldn’t get to the bottom of her ongoing hip problems - he was astonished that HRT fixed it, so much so, that he now asks his patients in clinic as part of their assessment if they take HRT. The new thinking, I gather, is that with modern, safer, products, there is no reason not to continue it for life - if wished.

BeautifulBirds · 10/02/2022 19:26

Is methotrexate still used for arthritis pain?

Poetnojo · 10/02/2022 19:24

It won't be to everyone's liking but I have been looking into the carnivore diet when researching ways to help my mother with her debilitating RA and it seems to be life changing in regards to many auto immune diseases and also mental health problems. It might be worth looking into to see if you could benefit from it.
I'm doing keto myself but it's closer to carnivore as I don't usually bother with veg apart from some celery or mushrooms.

Hankunamatata · 10/02/2022 19:16

My mums crippled. After years of different painkillers she actually has cut herself down to daily paractamol and ups to co codamol for bad days. She found stronger stuff of no benefit in the long term. She now tries to keep mobile (she is classified as disabled as cant walk more than two steps unaided and leg give way) does arm chair exercises, hot water bottles, heated blanket. She says most important bit is keeping to some level of activity every hour or then pain gets worse.

Sideswiped · 10/02/2022 19:07

Sorry, it's me again!
I just wanted to say that GPS and rheumatologists saying to just take paracetamol would be laughable if it wasn't so awful.
Before I was prescribed amytriptyline I went straight to cocodamol (30/500) because I knew that paracetamol or ibuprofen wouldn't even touch the sides.

Sideswiped · 10/02/2022 19:03

OP, if your finger or thumbs joints are painful, compression gloves are good. Sports tape (AKA KT tape) can be helpful too. (I used to use it on my knees but have graduated to supports when I need them now). You will need to Google the appropriate way to apply the tape, as you can put some stretch in it, but need to be a bit careful. I should warn you it's very sticky (so stays on for nearly a week as it can withstand showers and baths), so you can also benefit from a free wax when you pull it off! Grin
For those saying joints don't get deformed, I have both Bouchards and Heberdens nodes on my fingers and thumbs - I definitely don't have RA. (These restrict the mobility in my hands.) I've got no cartilage left behind my right kneecap and the left is going the same way.
You need to go back to your GP and say that OTC medicines aren't doing it for you. If they still won't help, you can ask for a referral to a pain clinic. If the physio service is any good in your area, ask for a referral to them too - I saw one specifically for my hands and she looked at my thumbs and told me I needed to use thumbs splints (my CMC joints are badly damaged). She gave me one of the NHS ones in the delightful 'flesh pink' that has matched no-ones skin, ever... She was only allowed to give me one, mind you! I've since bought ones that are far better, but cost £50 each. I've just replaced the original pair which are somewhere between two and three years old, so well worth it.
If you know you can spare the time, you can get paraffin wax and a special heater for it. (If you're the only one using it you don't need to replace the wax often at all). It's very soothing and you can use it in your hands and feet. The wax leaves your skin beautifully soft too.
Sorry that's so long, but these are all things that helped me.
(I'm also now taking amytriptyline due to another condition, and I've found it really helps me to sleep, but I know it doesn't suit everyone. There are other forms of pain relief out there, so don't let your GP fob you off.)

Susu49 · 10/02/2022 18:55

If you can afford it, I would consider 1-2-1 (or small group) pilates. If you can strengthen the muscles around your joints it will put less strain on them and help with pain as well as associated problems, such as weakness and balance issues.

A good pilates teacher should be able to work within the bounds of your weak joints. Alternatively, a physiotherapist can help (and many these days teach pilates as well).

I know some people with arthiritis who use infrared lamps/heaters although I couldn't tell you if it's suitable for your type of arthritis or not.

Swimming and other water based exercises are great for arthritis as the water takes your weight and brings in gentle resistance training.

Flowers
AuntieMaggie · 10/02/2022 18:48

@30Toothsil can I ask how your hip replacement was? I'm a similar age and awaiting one...

Heat, steroid injections, paracetamol, ibuprofen, codeine to manage pain here... I bought a heated mattress protector which helps at night. Those sticky heat pads can help if you're out and about but cost can add up. Mine is in my hip so I do exercises to strengthen and stretch that area... Squats, lunges, kettle bell swings... I notice if I haven't done anything active for a while, sometimes there is some pain from exercising but I know it's temporary and better in long run.