I need help. I know we are all constantly sore but I'm not coping with it at all at the minute. I have RA (sero -ve) for past four years.
Currently on mtx 25mg injection and pred 15mg. I'm waiting to start my 5th biological.
I've just had covid which was nothing more than a mild cold for me.
My right foot and knee are sore, my right wrist is sore. Both shoulders are sore left worse than right and I think I'm getting cellulitis in left leg.
I get into bed and have to stay in one position till morning when I have to try to get out of bed. My husband has to get me dressed most days especially my bra.
I have 5 kids at school and am self employed and have to work. I don't feel that the rheumatology team ever discuss pain management and the GP hasn't come up with much either so was wondering what everyone else has tried and found helpful.
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wilbertjellyfish
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wales.nhs.uk/sites3/Documen... above is the 'pain ladder' approach to managing pain which is used by most health professionals. You might find it helpful.
The techniques that I find useful include distraction - using activities such as music, reading, looking at the birds, and writing when I can (and my new Wave keyboard suggested by the NRAS talk last week is excellent).
I do gentle exercises mainly adapted yoga ones which the yoga therapist I saw several years ago drew up for me - it has four levels for the levels of pain and stiffness I have. I go to Fit Aqua in the pool and the instructor knows my problems and often says 'don't do this' or 'take this slowly' and doesn't encourage me to do too much.
I'm sure loads of people will be here soon to add their own particular tips!
The two people I have found most helpful are the Occupational Therapist and the Physio, rather than the nurses or doctors who are mainly concerned with medication which I don't like taking.
My GP prescribed co-codamol and I was told strictly only to use it when pain was really bad as they can get addictive.
I mentioned to a rheumy registrar the GP had prescribed co- codamol and he said dont ever take them as they can lead to a path of addiction, I asked what I could take instead and he said an ice pack 🤔
I did say I think think I will have a problem swallowing the ice pack but he didn't appreciate that response!
I've really never had much more help than that, apart from being told to put either a hot water bottle or ice pack on things and there are times where that just won't cut it aren't there.
I know some people find CBD helpful but thats never really been my thing, dont know much about it.
I've also been offered steroids which I guess aren't pain relief as such but in your case they might be an option short term.
I do know the co-codamol makes me drowsy sometimes so not really great for the day, I wouldn't take one and drive (maybe its just me, I cant remember what directions say) so as a busy parent I think you've got to weigh up your options.
I know this sounds a little pathetic but I did buy a heat pad which heats up immediately and that does give me relief, if you could make a while body suit out of it that would be ace !
Really sorry you're going through a tough time, it sucks xx
Thanks for the laugh. I doubt I could swallow an ice pack either. I take co codamol I wouldn't say I'm addicted. Most days I take two in morning with a paracetamol to get me through till the steroids kick in. However, days I'm not feeling too sore I can skip them.
Yes, overdosing I know. Years ago I had shingles when pregnant and co codamol was all I could take. I was on 10 a day for ages then weaned off them. I took them every four hours and woke at 3am when they ran out, then had to wait to 7am to take more or a wouldn't get through the day.Now I'm only taking 8 paracetamol most days.
I think at times I have no pain threshold and feel a bit pathetic but really I've done two natural births with no pain relief and I was on imaraldi at a stage which is awful to take.
It doesn't help make you feel better if your just crap with pain.
Its your choice but I would urge extreme caution. Paracetamol keeps working and can build up in your system IF you take more than the recommended dose, especially on a regular basis which is what you are doing.
I used to work on a transplant unit and have experience of looking after people who have needed urgent transplants after an accumulation of paracetamol.
It's a fantastic painkiller but can be dangerous in excess especially over time.
Cannot you not discuss this with your GP and get something stronger or more suitable for your pain? As for shingles the pain tends to be neuropathic in my experience and tends to be treated effectively with something like gabapentin or pregablin. But I appreciate everyone is different and people can make their own choices. I just wanted to share my concern.
Cocodamol is codeine and paracetamol combined and it comes in different strengths. I had so much of it in the eighties before my first hip replacement (I waited ten years with three young children...delayed because of my young age) that by the time of surgery it was no longer very effective. However, with this latest flare, I use it sparingly. I have been prescribed 30mgs (a high dose) but only take half a tablet with one paracetamol. I have this at bedtime and again around 4am which I find helps me to cope with the pain and stiffness during the night hours. I try not to use it during the day, relying mostly on paracetamol. If I still cannot manage I have a quarter of a tablet (7.5mg) around 2pm as well. It makes getting out of bed in the morning so much easier when I do this. I probably should add that I can't take anti-inflammatories but they used to help years ago. I hope you find something that will help soon. Take care.
Poor you. That no man’s land waiting between biologics is awful I know. Steroid injections into a joint can help when it’s really bad. I’ve had them into my shoulders (when I couldn’t move my arms or wash and dress) and into my right foot under ultrasound. They made a huge difference. Other than that you could try Voltarol gel topically or ask your GP to prescribe Capsaicin Cream which is even better.
Cocodamol are best avoided unless you are really desperate and then only take for a day or two to avoid addiction problems. I have taken it occasionally, mainly at night, to help me get to sleep if experiencing pain that paracetamol couldn’t deal with.
For my hands, I found heat most helpful and bought a Theramitt off Amazon which you heat in the microwave.
Yes, Boots will order the wax for you. On this topic, I came across my son's school diary the other day written in 1978, when he was ten, and I quote the following. 'Daddy has to take Mummy to hospital three times a week for her wrists and her hands and she has bought some of the wax that they use. Mummy let me put my finger in to try it and it felt like warm peanut butter'. HIs teacher replied, 'Peter, how do you know what warm peanut butter feels like?' It made my day finding this and my hubby and I had a lovely chuckle! He also appears to have helped me a great deal although I'm not sure he made the cottage pie for tea all by himself! 😀
So sorry to hear about your situation. Lots to deal with. Your level resilience must be off the roof. I hope you know how strong you are even if right now it doesn’t feel that way to you.
For pain management, I realised that there is pain and suffering. Pain is the physical pain and suffering is the emotions that accompany pain. When I hurt I know I am afraid and anxious it will get worse and this tension increases the pain.
To help with the suffering breathing exercises, whatever helps you relax and feel calmer may help.
Sorry a bit far out but just in case this may be of use to you.
I'm off work this week with covid. I think when I go back to work I'll be too busy to think about the suffering and also be moving about more. I'm hoping this helps.You are right though I'm not coping with the suffering part because I try so much to carry on and get very frustrated when I can't. I've always been independent and having to get help goes against the grain.
Basically your Rheumatology team should be trying to manage your pain with the right pain relief whilst waiting for your biologic. They might not be giving you the maximum dose needed or the right combination of pain relief to obtain pain relief. I empathise with having to stay in one position all night and stiffness and pain in the morning - it really is too hard to carry on a normal life like this for a length of time. It wears you down eventually. I think you probably realise you need to speak to RA team again and insist on more pain relief. Once a biologic works it can eliminate RA pain and stiffness completely.
Thanks everyone for the advice. Definitely helped to not feel so alone.
After having an awful few days up to Tuesday on Wednesday around 11am the pain went away. Well reduced noticeably.
I’m still stiff everywhere are my shoulders are a bit sore but was able to turn over in bed last night.
Not sure if it’s to do with the time of the month, that always makes things worse or the cellulitis in my leg. Definitely more sore all over if I have it.
Anyway I’m only taking paracetamol today and only 6 I think so big reduction in the pain killers.
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