Hand and wrist pain

[Sara_A]

I have lupus and aps and my main joints affected are hands and wrists.

At the moment tho my right hand and wrist is so bad I can hardly move or use it! I'm on slow release morphine which I increased a bit but doesn't seem to be touching the pain.

I have 2 small children and am finding it so hard to pick my 16 month old up or even change her nappy is agony.

Saw gp again! today who has tripled my steroids which I hate doing, I thought now on mycophenalate I wouldn't have to do that anymore. I'm back on so many drugs am so fed up! I'm on about 140 tablets a wk!! Which is ridiculous where is it gonna end and how am I gonna carry on working ( I only do 2 days because I can't manage more) but I am struggling now with my hand.

Sorry just needed a moan, I'm right handed and it's just so hard and I feel like my kids are missing out because of me cos I can't always take them out or do stuff with just one good hand! I worry that it will be like this forever now.

[Hidden]

Hi there. I'm sorry your wrist is so painful. I was misdiagnosed with RA about 7 years ago and this is how things were for me too. It is so all consuming when you're in that kind of pain I know - and my children were teenagers by then but having a baby must really hard for you. Have you had it looked at by x-ray or ultrasound at all?

For me I used ibuprofen gel undermeath wrist splints. I also found seeing the physio helped a lot.

She referred me to OT who came by my home and watched me struggle with kettles and pans etc. My knuckles were very swollen too so they found me splints that avoided my knuckles. She referred me on for a special night resting splint which was made to fit my right hand and wrist and prevent ulnar drift. Also she got me some gadgets and exercises and methods of doing things to not make my hands any worse.

This really helped and finally methotrexate kicked in and I've never really struggled in that particular way since then.

I'm on Mycophenolate too and it's a good drug but I'm not sure it's very effective where joint inflammation is concerned.x

[Sara_A in reply to Hidden]

Hi yes I've had X-rays when they've been bad but nothing shows but rheum said that lupus doesn't and also doesn't always have swelling or a raised crp.

I'm 38 now but had probs since age 21 and a few years back before I had my kids I used to see an ot and had resting splints up to my elbows but I don't know where they've gone so think I must have thrown them out as I had got better.

I've got plastic moulded ones for daytime and other brown splints with thumb extensions so I kind of alternate between these.

I'm thinking I'm going to need to go back to an ot so will get referred.

It just gets me down even doing simple things like going to get a few bits food shopping is too hard at moment! I get my full shop delivered as definitely can't manage that very often anymore.

I'm on hydroxychloroquine too which worked well on its own before I had my kids and stopped it during pregnancies and it's not seemed to have had same affect since.

[Hidden in reply to Sara_A]

Sometimes Lupus and RA flare up between having children as hormones fluctuate - so my guess is that this is what's happening to you? I have Sjögren's but the same thing applies - although unlike Lupus - it tends to progress as we age and is more commonly diagnosed from 40s onwards (but that's diagnosed not necessarily when it starts!).

I think you should definitely go back to OT now. It may be worth discussing trying Methotrexate with your rheum if you aren't planning to have more children?

[rlupus]

Hi I have this problem and its very painful my GP injects hydroquarterzone (spelt wrong sorry) into the joint and it does help but i am only allowed max 3 a year, and also wrist splints,

hope the pain goes soon for you

[Sara_A in reply to rlupus]

Well I can't pinpoint the exact spot, there's one spot that's painful but then others that can be too so I'm unsure where they would inject. The rheum mentioned it when I saw him 6 wks ago but I couldn't say the exact spot. I wonder if it matters and that if they do one place it will help the whole wrist??

I hate wearing my splints cos people say oh what have u done? But cos nobody really knows what lupus is u then find urself trying to explain, when if I could just say I've got arthritis that would be it!

Will see if these steroids do the trick then should see rheum soon as he said 3 months and it's been 6 wks already.

I just get so frustrated as I like to be getting on with stuff like the garden or jobs at home, I just sit looking at stuff desperate to want to get on!

[rlupus in reply to Sara_A]

My GP asks me were the most pain is then he injects its right in the bendy bit of wrist i find it does help i will be honest it really hurts for a couple of days but then seems to settle its worth a try,

good luck

[Chanpreet_Walia LUPUS UK]

Hi Sara_A,

Around 90-95% of people with lupus will experience muscle and/or joint pain. We published a blog article on pain management which includes tips and information which I hope will be of help to you: lupusuk.org.uk/pain-managem...

Please keep us updated, all the best.