I'm trying to type this without aggravating my hands as I am currently suffering with a flare up in both my hands and wrists. I keep getting pains when I pick things up and I get stabbing pains every once in a while when I move my hand slightly. The pain shoots down my nerves in my arm and is really painful for a second or two. My hand is swollen too and feels tight and sore which doesn't help either. I'm finding I keep dropping things and doing such simple tasks are impossible without feeling pain.
I've been waiting for an emergency referral to the flare clinic but have a 4 week wait on top of the 6 weeks I've already been waiting to get seen. I'm not sure how I will cope for another 4 weeks of this pain!
Anyway, I thought I would reach out to see if anyone has experienced this and has any tips/ideas to keep me going for the next few weeks with pain management? I'm trying to not let it get me down as the last thing I want is for it to rule my life.
I look forward to receiving any comments or advice
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Shellbelldaubney
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Oh I'm so sorry, I've experienced this and it's awful :(. I have a basket of splints, braces, and so on for whatever joint is giving me hell during a flare, so I think I got you covered. When my hands and wrists are acting up I take a good look at my week. Too much computer time? Can I cut back? Do another activity? Since I have stopped working it's a bit better but if I'm having a gaming jag or a drawing session, I'll feel my hands hurt. I have to switch it up.
I have plastic cups and cutlery handles for bad days, things easy for me to lift (even a heavy cup will hurt if it's especially awful) I have tactile therapy gloves which apply a bit of constriction on my hands but also helps my grip. They also keep my hands warm which I find helps. I picked them up on Amazon. I also have wrist braces which I'll wear on a bad stretch of days as needed, and I wear ring splits when I need as well(amazingly I haven't needed to wear those for a while but winter is on it's way and I will dig them out again soon).
Thanks for your reply, I hadn't thought about plastic cups and cutlery handles so will definitely invest in these to help!
I had this too for a few years and was misdiagnosed with RA. It turned out later that I have primary Sjögren's - a Lupus-like presentation. It's a horribly incapacitating pain and is how my RA-like symptoms first started. like Silvergilt I am an artist and had a big commission on when this kicked off so assumed for a while that it was RSI - until it started in both knees too!
I used splints, a paraffin wax hand bath and was referred to a good physio who in turn referred me to the hospital for OT and a bespoke night resting splint. I was given some strange treatment called magnetic short wave therapy (I think) where I sat with both hands wrapped in a towel enclosed and rested them inside some machine for about 30 minutes each session. I'm not sure this it actually did anything - but after a few months of weekly treatment and Methotrexate the problem in my wrists disappeared and has never really returned 🤞🏽
Sometimes I do have a mild version of this and get my splints out but in those days my wrists and hands and other parts felt fractured and that really was painful and disteassing. I do hope that you get seen soon and can only recommend good splints and ibuprofen gel or something similar for the short term.
Hi, I struggle the most with my hands and wrists so have to wear wrist/thumb splints when they are bad. I went onto buprenorphine patches for the pain as can't tolerate ibuprofen but my skin became irritated so am now on zomorph ( slow release morphine tablets) twice daily which has helped but I still get it flaring thru now and again so my steroid dose has to be increased or a steroid injection which I've just had another this wk.
Do u see an occupational therapist?? They can sort splints and help with daily things if usrestruggling at home x
Thanks for your reply. I have only seen an OT via work & it was just to reduce my work hours. I will ask next time I go back about splints to see if I can get one.
Sorry to read this. I know this type of lupus symptom and how painful it can be. I was diagnosed with SCLE in November 2013 with various symptoms and this was amended to SLE earlier this year. My wrist issues started in 2014. I was working in a school as a TA at the time and I have 3 children myself so it was a frustrating symptom. My hands were weak. Shooting pains, sometimes from my elbows etc. I've also had pins and needles in my hands. My Rheumy examined me and said that I have De Quervains tenosynovitis. I think it's a form of tendinitis and it's inflammation of the tendons. Of course Lupus can cause inflammation anywhere in the body. At the time I was only on Hydroxychloroquine and I had to buy supports (I bought neoprene Ines from Boots) and take pain relief. The symptoms never really completely went. But she never asked about it again. I don't have to be flaring to have these symptoms but they are worse during my flares. I have experienced it in my ankles. But due to the way things have been with my treatment here locally, I have barely mentioned it to my local Rheumy. I am now on Hydroxychloroquine, MMF and mepacrine for my lupus and everything is much more under control. I still get the odd twinge in my wrists but no where near as bad or debilitating as before. Do you mind me asking which hospital you attend, only I've never heard of a flare clinic before? Are you flaring at the moment?
Oh no, poor you. I feel your pain literally! I'm in Oxfordshire so being referred to Nuffield flare clinic. Sadly it's only once a week so appointments are hard to get. Am having a bad flare at the moment in my hands & need to get an injection or anything just to help ease the pain. The problem is that I'm on warfarin so I tend to find any medication interferes with this.
Flare clinic sounds great, even if over stretched. The NHS is struggling in general I know but rheumatology and Dermy departments in particular. Will you let us know what they do for you? It's always useful to people here to compare and also so in future people will be able to see what happened, if they suffer the same. Good luck.
So sorry to read of your hands/ wrists flaring and long wait for clinic appt. you could ring them and ask to be considered for a cancellation. Holiday time you might get one. Worth a try. Good luck X
We published an article about pain management in lupus not too long ago and it includes lots of tips - some of which you may find helpful. You can read it at lupusuk.org.uk/pain-managem...
I've had the same problem with my wrists. It comes and goes. The joint gets swollen, it feels like a bump. My trick is to wear a bandage/Wrist Wrap Support for a few hours (about 4 hours), so I keep my wrist still, no movement, and also the pressure helps a lot (Not a lot of pressure, just enough). I don't wear it for many hours because it then does the opposite, it gets worse. Nor I go to bed with it. It's important to keep a healthy, regular blood circulation. So, a few hours with it, then some time off, then back again. Depending on the improvement and how it is feeling.
It may take some time but it works and you don't need to take painkillers.
hahaha try to relax. I know how desperate you can feel with it but stress doesn't help. These last weeks I've been coping with gum/sore tooth on and off, grrr...it seems I've finally found how to calm it down.
Also for your wrist: hot pack.. the one you put in the microwave/hot water.
Try those two. Almost 20 years of this and so far this has been useful.
If you are using a tablet/iPad......have you tried using the dictaphone gadget?
I'm using it now.... Sitting here talking to myself & my words appear on my tablet. It's a great help when your hands are really playing up!
My hands look perfectly normal but they won't bend in the way I want them to .....so I now live with melamine crockery and plastic glasses. Fortunately they are not too painful but they are really embarrassing sometimes when I am trying to do something quickly and my hands just won't go where I want them to.
If you use a tablet it's the microphone icon (bottom left on an IPag)
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