Pain management how do you manage the pain?

Firstly, Thank you to all you wonderful people on here for sharing. I truly believe that means you care.

So here is my issue and questions. I have slowly gotten pain on and off again since the "miracle steroids" are reduced in amount.

I have had a few tough days with a bit of low mood, work and physical pain.

How do you manage this?

I have so far not been prescribed anything... haven't asked for any either as the pain only really set in with the change of weather a few days ago and the newer lower dosage of steroids.

( sounds so wired to hear myself say that the weather is part of the problem!)

I have codeine tablets at home, but unsure if I can take that on top of all the other meds.

I fear for my liver... it must be struggling like mad. 😖 I have cut out my occasional wine glass. ( early drank to begin with but have a love of a glass now and then with a good stake.)

I have never ever had to take medication like this... and I worry about all the side effects.

The pain free weeks I have had recently, have been oh, so so heavenly.

I have not been able to stop commenting to my hubby about how amazing it felt to be with out the pain and how odd it is that I have gradually accepted to live with the increasing pain before going to my GP. 🤔😢

Please let me know how you manage and if there is any pain relief plan/medication that you recommend.

I read that in general to reduce chance of inflammation in the body I should minimize sugar in the diet. Any views on this?

All advice and experience shared is highly appreciated.

3 Replies

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  • Hi. Unfortunately pain is an issue until you get the disease under control. People have to find what works best for them: heat pads, ice packs, TENS machine etc can all provide relief.

    If this is not enough, ask your GP for help. They can check what is ok to take with your RA meds and give you prescription level doses of cocodamol etc.

    Regarding inflammation, some people find a benefit from restricting their diet e.g. Low sugar, reducing processed foods etc. I have an anti inflammatory diet from a nutritionist which helps me. Everyone is different though so if you want to try this it would be trial and error.

    Some people also find supplements help. I take fish oil, turmeric and Vitamin D.

    It has taken me 5 years to find all this out so don't feel you have to make lots of changes all at once.

    My advice would be to try one thing and see if it helps. Changes to diet and supplements can take weeks to take effect - if they help at all!

    Hope you find something that helps you. Please don't hesitate to get help from your GP if you need it. Being "brave" and enduring pain doesn't help anyone.

    Best wishes

  • Hi I am not sure whether you have RA or Lupus pain, not that it really matters. I have Lupus plus RA and other bits as extras. So I agree with what has been said. It has taken me some time to control the pain as I find it has had differing causes, like neurological, circulation etc If it is medication, it takes a while to get the balance right and also to find things that will inhibit their actions. I have tried to make my diet better cutting out sugars, preservatives, gluten (I have bowel problems) and also reducing my weight. Slowly I have started a pattern of taking pain killers, then twenty minutes later going swimming (just holding and flapping my legs at first) remembering to rest after and take meds four hours later. Initially it was sore but the combination has helped. I use hot and cold packs. Please contact your GP if you cannot get it right there are pain clinics. (I too cant drink now).

  • Hi Spring - There are a lot of "tricks" if you want to call them that, that might help. Yes, cutting out sugar can help if your pain is due to inflammation as it helps increase the inflammation. Epsom salts baths might help, TENs machines, topical gels or ointments (like Voltaren, or homemade with pain controlling Essential Oils), resting when you need to, drink lots of water, etc. I discovered lactuca virolas (wild lettuce) tincture. It helps a little during the day and I found a version that has Valerian in it which has done wonders to help me sleep (of course that is with Lunesta helping too). Don't forget to talk with your GP too if your pain is not under control...

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