Putting up with pain

[beeckey]

Hi it seems that i have been living with this pain for ever. I phone the nurse 3 weeks ago as the meds that i was on were not working so she phoned me back and seen me later in the week and agreed with me as i am in agony.I have had a bad year as this will be my 3rd new med i that i will have tried.I have had 3 lots of oral steroids for the pain as it is the only thing that helps but they have brought on type 2 diabetes so no more of them so i am left in so much pain and can hardly move as the pain is all over my body.My hubby phoned them again yesterday and told them cannot leave me like this as i am so bad and pain killers does not touch the pain.I just need help as i cant go on like this.Thank you for reading this.x

[Neonkittie17]

Sorry to hear this. Also what the steroids have done, so no relief from those allowed there. Hope the phone call results in a plan. 🙏🏻

[beeckey in reply to Neonkittie17]

Thank you

[Neonkittie17 in reply to beeckey]

Let us know how you get on. 💗

[Pippy25]

I am so sorry to hear this and totally understand although wished I didn't. I truly hope that there is something out there that will take away or relieve the pain for you and am sad to hear the steroids while they helped have lead onto type 2 diabetes. Take care xx

[beeckey in reply to Pippy25]

Thankyou

[Hidden]

With the caveat that I’m not medically qualified. Painkillers never work for my arthritis pain, not even the really strong opiates I take for another problem, but have they tried you with high dose NSAIDs like naproxen rather than bog standard ibuprofen? Failing that, have rheum considered trying a COX2 inhibitor? Would seem a reasonable step to try if you know other NSAIDs don’t work and you can’t have steroids because of your T2. The other things that sometimes bring me some relief are heat, and, if your hands are a problem, I find compression gloves do really help me there. Sometimes just managing to take the very edge off can feel like a miracle when it’s really bad. I hope they manage to find something that helps you soon, though, both short and long term.

[beeckey in reply to Hidden]

i am on 2 strong pain killers but do nothing for it .I am hoping for a miracle.

[Hidden in reply to beeckey]

That’s why I suggested cox2 inhibitors if you haven’t tried them already - from what I’ve seen, medics regard them as a ‘last resort’ for joint pain. My understanding is they’re only licensed for RA/inflammatory arthritis, or in the case of one of the two available in the UK, gout, but they’re specifically for inflammatory pain. I’ve never tried a cox2 myself, but as I said, other painkillers don’t help me at all when it comes to my arthritis pain, not even liquid oxycodone, which is twice as strong as morphine. But if you’re in that much pain, asking about a cox2 has to be worth a go - worst they can say is no. And unlike opiates and other similar, strong painkillers, they’re not addictive. As per the reply from stillsdisease, though, long term it can be a question of learning to live with a certain degree of chronic pain, at which point mindfulness for pain management (as per their suggestions and comments) is a helpful way forward. It’s enabled me to come to terms with the pain I’m in 24/7 and changed my relationship with it. Hopefully it won’t come to that for you, but we do now know that whilst they’re good for short term acute issues, painkillers are not the best or most helpful option for long term chronic pain. In part because they very often stop working, assuming they help at all in the first place.

[Mmrr in reply to Hidden]

Diclofenac Acid (voltarol) is one of the few meds that has helped me with pain relief.I believe it to be a cox1 and 2 inhibitor.

Many GPs will not prescribe it, I've been taking it for approaching 32 years with no issues.

[wb54 in reply to Hidden]

I have gone from Zomorph (400mg a day) to Tramadol (400mg a day) to Gabapentin (1800mg a day) and back again, none of which have really been of much use. Unfortunately, my GP refuses point blank to prescribe anti-inflammatories as they could/would seriously impact the efficacy of my heart meds. I did say the stress from being in constant pain is probably more of a threat to my heart than taking anti-inflammatories. I will keep plugging away to my GP, but I really don't think he listens anymore. Good luck to you Charlie.

[weymouth321]

Hi Beeckey,

I am very sorry to hear of this awful pain you’re living with

My 76 year old male friend ( long standing diabetic ) is currently taking Oramorph for his pain - he tell me it works a treat. ( He has left leg infection with metal work in situ ( old op from falling down in his garden )

Get referred to your local hospital Pain Clinic asap - and stay in the system with regular follow - up appointments - make sure you always have a Regular Follow up appointment before leaving the Pain Clinic each time .

Diazepam works very well for the sciatica I had recently , even moving 1/4 “ was so so painful .

Sending you lots healing vibes 💫

[Hidden]

agree with earlier comment heat and compression are a great comfort. We’re all different and so is our pain. Try thinking of the pain as part of you and see if you can train your brain to accept some of the pain. You probably need to be in a better starting position than you are now to try this. I’m not saying it dismisses pain but absorbs it somehow. I’m not an ‘alternative ‘ follower and have had RA pain that was worse, far worse, than child birth but when you feel ready it’s worth a try. My mantra upon waking each day is ‘ which joint hurts least ‘.... wishing relief for you soon.

[Hidden in reply to Hidden]

Agree completely: mindfulness for pain management works. It doesn’t reduce the pain necessarily, but my experience is it changes your relationship with it and makes it more bearable as a result. Like you, I’m also not into alternative treatment, and I’m actually quite a sceptic, but I do believe in what works, and mindfulness has been key for dealing with chronic pain for me.

[Hidden in reply to Hidden]

yes, that’s it exactly ‘changes your relationship with it’. It’s like having an unwelcome relative move into your house with you, they won’t ever leave but sometimes they go and shut themselves in their with a book 😆

[Mmrr in reply to Hidden]

Me too Charlie. Pain killers are pretty much useless for RA pain (for me).Good self managemnent , mindfulness and just saying no to people with expectations that you cannot meet go a long way to a happier life.

A happy mood = manageable pain levels.

[wilbertjellyfish]

My heart goes out to you. I've had long periods of being in pain (I'm not pain free at the minute but I can manage).I've asked my husband to shoot me more than once as I couldn't muster the mental strength to haul my ass out of bed another day in pain.

I'm on my fifth biologic...it's helping but I wouldn't say it's working. I'm still on steroids after five years. They are the only thing that works. I try to cut them down...not much success on that front. A part of me knows the day is coming when I have a complication and have to stop them, I'm burying my head in the sand about that.

I do feel for you, all I can say is you've made it this far... keep going and shout to everyone and keep shouting about your pain till someone listens😘

[Sunshinereturns]

I was feeling desperate and my rheumatologist has put me on etoricoxib and it is helping me. Diclofenac did absolutely nothing.

[Hippo1234567 in reply to Sunshinereturns]

I take etoricoxib if I have return of pain and it works well for me. I don’t have to take it every day.

[diana16]

Hi Beeckey, I think we all know how horrible rheumatoid pain can be but I must say that now I am on biologics my life has been transformed. The only pain I have now is OA in my hip which I guess will eventually have to be operated on. I am on low dose steroids as well for approx. 10 years, not ideal I know, especially as they have with you they can cause diabetes but I am willing to take the risk at the moment. Good luck with everything and keep badgering your rheumi.

[Evie3]

so so sorry…..hope you get some relief soon🙏

[Macb12]

Hi BeeckeySorry to hear you've so much pain, still. Think we all have an appreciation for what a horrible disease this is, and how hard it can be to keep going when the pain is so relentless, but pain always changes eventually, and there's always something else they can try for you. Keep at the rheumatologist until you find some relief.

And meantime, I hope all your other daily strategies get you through to each new day - whether it be heat, cold, compression, four leaf clovers, mindfulness, diet, breathing exercises, movement, spa pools, Epsom salts, Bowen therapy, stillness, supports, pillows, lucky pants, praying, swearing, hypnosis, distractions....or some big combination of all these things....take care Beeckey let us know what helps. X

[strongmouse]

The combination of type 2 diabetes and steroid issues is a problem. My husband had type 2 diabetes when he developed RA. During the pandemic lockdown, seeing different doctors, he was prescribed steriods and hydroxychloroquine which helped with the pain but he ended up with side effects from both. He can't take NSAIDs because he is allergic to aspiring, and he can't take codeine because he doesn't metabolise properly.

He is on a biololgic infusion, tocilizumab, but the pain from the RA isn't under control. He has phoned the RA department several times and spoken to the nurse last week who promised to phone him back. Nothing so far. I am at my wits end as to how to help him cope with the pain. He is not the sort of person to complain. Where do I go to next? What can be done?

I have pain and can tolerate codeine and have done a 'Pain Management Course' - this is at a differnt level. Beeckey, I emphasise with your saying you are in agony as this describes my husband. It seems that the combination of RA and diabetes type 2 have an added complication pain wise.