Flare Up Pain and Sleeping Advice

[mawe-3143]

hi all - I have recently been diagnosed with Lupus this year and have been really struggling especially through the nights when I have a flare up. Does anybody have any recommendations or tips on how to ease the pain and get any sort of sleep at all? docs prescribed me co codomol and naproxen for pain relief but they make little difference. Thanks all

[Debbie_kinsey Administrator LUPUS UK]

Hi Mawe-3143

Sorry to hear you’re struggling with pain and sleep. Everything can be so much tougher when you can’t sleep!

It might be worth going back to speak to your doctor again if the pain medication isn't helping. They may be able to try a different medication, or refer you onwards, for example to a pain management programme or a physio to look at things like special pillows or positioning, if they thought that might help.

On the LUPUS UK website we have a blog article about pain management in lupus which may be useful: lupusuk.org.uk/pain-managem.... It doesn’t specifically talk about sleep or pain at night, but it includes some quotes from different people about pain management techniques that they’ve found helpful.

Take care

Debbie

[Lulamay7]

Hi, definitely keep trying different drugs, cocodamol only works if you can metabolise it. 25% of Caucasians can't. I am on tramadol (morphine based) etoricoxib (nsaid) and paracetamol. I like to think of it as covering all my options.

Still have nights where I just want to cry but not every night, which makes it bearable.

Sometimes it's easier if I just give up on trying to sleep, sit up, get my kindle out, have a cup of tea and relax in bed instead. Often fall asleep again anyway.

Hope you get some relief

[StriatedCaracara]

My immune system kicks in during the early hours and sometimes I get up and do some work for a little while, go back to bed and feel bit better. It seems to switch off my immune system a bit

Also NSAIDs I found helped even at at low dose. 70mg aspirin per day plus omeprazole.

When I started on hydroxychloroquine things got better.

Currently having short course prednisolone because of flare and find symptoms kicking in much less, and don't need to get up during the night.

Think natural steroid is released before we get up, so the phenomenon is a middle of the night only thing for some of us at least.