I wondered if anyone has had something similar to my wonky fingers. I have systemic RA-type and Sjogrens symptoms but I can't get a diagnosis or help.
My most swollen fingers have red or sometimes a lovely purple bruising on the PIP and MCP joints. It started in the pinkies and is spreading inwards to all the others. I'm becoming unable to bend my fingers and most are drifting outwards.
If anyone has had anything similar it would help me to know what to push for to get help. My MCP joints stick too when extending my fingers and the tendons down the centre of my palms look swollen. I was told after ultrasound I have 'healthy tendons' and am at a total loss.
Thanks for reading and hope you're keeping warm,
Chelsea 🦢
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chelseabird
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To be honest I can’t see the wonky, red and swollen fingers in this but maybe it is just the photo? I would keep on at your GP for further investigation. Have you been prescribed any anti inflammatories etc?
I wish I hand hands like yours and tbh can't see anything amiss. Have you kept any sort of record as too pain level and if its related to your hands getting cold ? It is difficult at the moment so try to be patient and see your GP.
Hi Chelsea, Sorry to hear this. Have you had your fingers/bones xrayed to see if there is damage shown on those? Ultrasound shows inflammation in soft tissue around the joints but not damage in the structure of joints/bones so MRI or normal xray would show joint and bone damage better I was told. However a rheumy knows their their job and knows more than I do, but having said all that, I had a full body isotope bone scan and xrays for my troublesome joints around the time of diagnosis. A rheumy physio might be someone you could get to support you if you have access to one or a general physio.
If you are hurting and your hands/fingers are different to what is normal for you there is a chance maybe RA hasn’t shown in your bloods yet. Happened to me. I do hope of course it isn’t RA and it’s something that can be resolved. Let’s hope so. 🙏🏻Mine are very wonky with drift in most ... a middle Boutonniere on one middle finger and a swan neck on the other middle finger. They look too weird so won’t post them and after much gardening this autumn they are dry (hoping Santa has left me some super duper intensive hand cream in my stocking !) You mean you don’t have a diagnosis for RA or Sjogrens? Have you had the hands xrayed to to look at the bones/joints? Presume your blood tests didn’t show RA. Despite my weird fingers I manage to do everything I could before which is fortunate as I’m an artist. Hoping for some answers for you soon. 💗
I think there could be a little more loose skin around the knuckles but I don’t know what your hand looks like usually. I can see a little swelling round the middle and ring finger mid knuckles. (Metacarpophalangeal joints) That’s what my physio used to say to me re the loose skin vanishing when inflammation was in my same joints. I can see a drift to the left in the index finger but it is hard to tell from that angle but going over a little to the middle finger.
They do look very attractive and straight compared to mine and I hope you can find a solution and remedy before you have any more discomfort or symptoms. 🙏🏻 If they’re hurting/swelling compared to your norm and becoming purple/bruised then I would want someone to have another look at them too. My rheumy physio was my go to person who could tell quickly what was going on and liaised with the rheumy. Good luck. Christmas greetings to you and take care. x
Thank you so much for taking so much time to reply! I very much appreciate it. I'm so sorry you have the swan neck and Boutonniere. It's good you're able to do what you could before, including your art. I'm a musician but the problems in my fingers have already stopped me from being able to play my piano, and I'm struggling to do other things.
I only developed the problem since April this year but the rheumy and ultrasound guy could see my fingers are swollen and discoloured. My photo is fairly crappy but also it doesn't show how skinny my fingers were before. You're right about the looseness - my middle knuckles have flipped outwards and are smoothing out. It's alarming that it's continually getting worse and harder to bend and use them.
Did you find it hard to get a diagnosis given your negative bloods? Mine are negative too though awaiting the RF results. I've not had an x-ray as I was sure a problem with my tendons would show up in the ultrasound. I could ask for for some. Good suggestion about the physio too. Thanks for looking attentively when you must have more than your fair share of problems to manage.
Hi Chelsea, I am only happy to try help and my physio was the person who gave me more info than anyone when I was first diagnosed. Do you feel any other joints to be swollen or painful? I would pursue it and ask to have another blood test soon. I did indeed find it hard to get a diagnosis as it was 9 months in waiting for the RF to show. Then the bloods showed RA and the isotope bone scan showed hot spots of inflammation round the joints I had most problems with -Hands knees and toes. I used to go to the hospital rheumy physio for wax hand baths which helped me to bend my fingers. So did Epsom Salts/magnesium sulphate in a hand hot sink full of water. ES/magnesium draws out inflammation. I hope you can get some relief soon and diagnosis/treatment and you can play your piano without discomfort. Thank you for your kind words. My wonky fingers don’t hurt so I am lucky there.
Thanks Neonkittie - that's great to know a wax bath helped you bend your fingers. Soaking mine in hot water used to but doesn't work now. I'll try the Epsom salts.
Yes, it spread to my neck, shoulders, elbows, hips, knees and ankles after the fingers started swelling, but it moves around and I don't know if a scan would capture it on the day. My CRP went up, but only to 3.9 which is still low, though high for me.
Good advice about getting my fingers to bend though - thanks for that. Very glad yours don't hurt. Mine don't tend to that much though my other joints can.
Yes try the ES. An isotope bone scan captured my RA round the joints as dark marks/hot spots on my scan but I’m not sure which scans are best these days as that was in 1995. CRP is good at 3.9 for many people but as you say it’s high for you. Mine is zero for 8 years but will change I’m sure when I move to another med next year. Hope you have a lovely Christmas.
Hi.I know how you feel. My hands look different to how they use to but not awful. I have pain in my joints in my hands and wrist.
I have diagnosis of autoimmune liver and some type of autoimmune inflammatory arthritis as per rheumatologist.
It's very hard when you don't know exactly what it is. I'm on plaquenil and now on a course of steroids for a month, I'm in week 3 now and it def improved my hands and feet. But my possible other sjogrens symptoms, dry mouth/eyes and sore glands in my jaw are coming and going still.
I was on arcoxia, it did help for a while, I'm having joint/mucle pain since May 21.
I'm so sorry about your liver condition and possible Sjogrens, and the pain 🙁 I saw on another post you're awaiting a lip biopsy and I hope you get answers soon. My bloods were negative for Sjogrens but I have zero tear production, systemic dryness, chronic reflux, reynaulds and neuropathy that all appeared at the same time. Will maybe ask for a biopsy too as I know Sjogrens can cause arthritis.
It's good the steroids are helping. Will they not start you on immune suppression regardless of which type of inflammatory arthritis you have? Hope you get the biopsy results soon.
I am sure your fingers are sore and obviously look different to you but without seeing them before it is hard to tell. They look lovely to me. On saying that, how your fingers look isn't always an indication of pain as many people have very painful fingers but they look ok. You say you can't get a diagnosis or help. You must have seen someone to be diagnosed with sjorgens so are you saying that RA hasn't been diagnosed? Are you waiting for another appointment? You do really need to speak to your Rheumatologist or nurse to find out what happens next. I know it is worrying you so don't leave it. It is probably not the greatest week to ring but leave a message and they will get back to you. Good luck.
Thanks Sheila for writing. I haven't managed to get a Sjogrens diagnosis so have no diagnosis of anything that explains any of the symptoms I have. My fingers are noticeably swollen in person and the rheumy and ultrasound guy could clearly see it - the less affected fingers on my other hand are far skinnier and you can see how they normally are. I have a phone appointment with the rheumy in a couple of days.Hope you're doing okay,
I’m sorry you are suffering with pain.I no yours look like normal hands but if I remember back mine were like that too before they started to spread and bend in odd shapes. My hands were X-ray a few times before covid. I’ve got arthritis in fingers and wrists on both hands and suffer with spasms in them. Not much you can do about it but hand exercises. Until you get an get to see your rhemy next.
Hi Chelseabird, yes I can see slightly swollen joints, I don't want to alarm you but sticking or locking fingers was one of the first symptoms of RA that I got. My hands drifted in a year before I was properly diagnosed in the 80's The splints I was prescribed were useless and 40 yrs later my hand are a bit of a mess.Things have improved nowadays, but it your noticing changes get them checked out, again, I don't want to alarm you but I can't ignore your post, sending best wishes Sarah 💕
Many thanks for your reply Sarah. Yes the locking in my pinkies was the first sign followed by stiffness and gradual swelling and drift. I'm sorry your hands are a bit of a mess 🙁 Can you manage with them? I hope so and thanks again for taking the time,Chelsea 🐱
Hi Chelseabird, yes the deviation happened when I was 18 before they started me on any treatment. Since then I've had careers as a vet nurse, cardiographer in a heart hosp, and after a break having my son become a learning support assistant in a college, and having ponies 😁 so it hasn't impacted too much, they just don't look great 😁. But again please don't worry, you will be fine, and things have improved since then, just remembered they did say I could have surgery to make them look better, but I might loose some grip, which I didn't want.Again that was a long time ago. Anyway best wishes to you Sarah 💕
You know what's normal and not normal for your hands, i would keep record of when its good/ bad etc plus take photos of when bad and when good so your Drs cam see a comparison.
I have RA (diagnosed 18 months) and my hands don't look particularly crooked or red but some days certain fingers can absolutely throb amd be so painful. I think some people might have had RA quite a while or maybe a very aggressive form and their fingers are obviously wonky, everyone is at different stages in their RA journey and if you feel yours aren't right 😉
Thanks very much Marion. I use compression gloves but they don't seem to help when they're sore, though luckily it's just an aching in my hands just now. My fingers never unswell but are just getting more swollen and less bendy. Unfortunately I don't have any useful photos of what they looked like before for a comparison. I might take one of the rings I used to wear into the rheumy appt.. I had very slim fingers and wore child-size rings before.Sorry yours can be so sore and I hope that can improve..
My right hand looks reasonably normal, my left has visible deformities, yet it is my right that gives me most problems. I empathise with you and the pain you are experiencing. Personally I've found rheumatology to be quite disinterested in my right hand. When my RA is better controlled, my hand gives me little problems.
You just have to keep plodding away with rheumatology, perhaps keeping a daily journal of how your hand feels, what you have been doing may help.
And....very important....ignore the negative comments, you experience what you experience who knows what is going on underneath...and the whole point of early treatment is to prevent deformity and maintain function.
Thanks Mmrr, your comments are always so helpful. I'm glad your hand pain can be helped and hope you are able to keep it under control.
My rheumy Dr Lambert said yesterday an MRI could be arranged but I wonder if it would show anything in my hands the ultrasound failed to. I have several other affected joints in my body but it moves around and is only intermittently very painful. I wonder if waiting for it to get worse so it might show on MRI is the only option.
I hope you enjoy your tunnocks teacake over Xmas 🎄
Hi ChelseabirdMy hands were red at the joints for several years, usually after certain foods. Then swelling eighteen months ago everywhere after an infection. Especially on the backs of hands, fingers tendinitis. Told it was probably carple tunnel syndrome ignored by nhs rheumatologist but private one gave me steroid injections in my palms and the strings went away. Lumps on the back didn’t go away though so I have been on steroids for months and now hydroxychloroquine from nhs bu they don’t ever want do checks it’s odd. Anyway three months in still on 10mg steroids but suddenly all swelling is down and everything is working again it’s a miracle! Start in that if you can it’s the mildest just need three months to kick in. Good luck
Thanks Gassin - that must be such a relief the swelling has gone down and they're working again! I don't think I'd be able to take steroids but maybe could manage an injection. Thanks for letting me know 🎄
Hi Chelsea. I’m so sorry you are having pain and problems with your hands. I really hope you get to see someone like a rheumatologist to try and work out what is going on for you. So hard for you with the pain and also how much it is impacting on your daily life too,
I have RA, I was diagnosed in July 19 after a year of being seeing by a rheumatologist with swollen joints mostly on my hands and feet st the time. I do have some slight deformity in my fingers and recently had some more ultrasound scans which showed arthritic changes due to long term inflammation and inflammation of my tendons too,
In the very early days the tests didn’t show much at all so please do keep a diary and photos and ask to be seen by someone like a rheumatologist. Thinking of you x
Thanks so much Summerrain and I hope you are now getting the help you need.
I couldn't get an NHS referral due to negative blood tests so have seen a private rheumy, but nothing showed up on ultrasound even though the doc could see the swelling and ulnar drift. He suggested an MRI but I don't see how that would show anything the ultrasound couldn't. I just don't know where to go from here and fear he will discharge me. I just hope in the future something might show up.
If you meet certain criteria you should be referred on the NHS even with negative blood tests I think….My bloods have always been negative and so I think it can be hit and miss as to how seriously you are taken. My consultant always says „there are rheumatologists who would say nothing to find and who would therefore discharge you but personally I‘m not convinced that is helpful and where does that leave the patient“.
As part of the diagnostic process he did a trial of steroids - have you had that?
I think it helped that despite Scans and bloods being negative I had a very classical story and symptoms …
Good luck, it‘s so upsetting and frustrating to be hanging in limbo and not feel you are being taken seriously
Hi Chelsea I thnk you could have the beginning of swan neck in your second and third fingers, I don't personally have that, just looked at images but I do also think you may be on the start of ulnar drift on your first finger. If you open your fingers apart does the first finger automatically go back into sticking with your 2nd finger. I have ulnnar drift on my first finger and little finger and have the tendon sticking up in my palm now. If you have a rheumatologist I would suggest contacting them and getting seen my occupational health so they can design gloves etc to help.
Thanks very much net2012, will maybe try occupational health. My ulnar drift is most noticeable in my pinkies but index fingers too like you say. I have the tendons sticking up in the middle of my palms too and wonder what that is. I hope I don't get swan neck but I think it's because my fingers are less swollen at the top so it looks like they're receded. Thanks for looking, it's much appreciated. Hope you're doing okay 🎄
Yes, I can see the difference as I have the same. The middle two fingers get so swollen and painful I can't bend the middle one I am on anti-inflammatories my rheumy specialist has said this is osteoarthritis and I will need an operation to put spacers between my bones so that I can bend my fingers.
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