Wondered if anyone here suffers the same symptoms in their fingers/hands/arms?
For nearly a year my fingers are swollen/puffy, which makes them impossible to curl and painful too. I can't lift or grip things unless they are lightweight (I'm only 42 years old)
From January to May they were really bad, and stayed swollen all day, with pain in the flexor tendons, wrists, right down to the forearm muscles where they attach near the elbow.
Through the summer things improved slowly, the swelling would subside later in the day, and compression gloves would help with this so I could get my fingers moving better in the evening. However I also have soreness in the base of the fingers, tendon friction/lumps on the flexor tendons a lot like 'trigger finger' (That started two years ago, random pain and swelling in individual fingers)
The finger swelling always comes back overnight - maybe immune system activity when sleeping?
Also being a little too warm sends so much blood to my hands that my fingers become swollen and really uncomfortable again.
I have mild Raynauds episodes which started early last year. Also my fingers were purple/blueish in cool weather, this seems to of improved now I'm taking Nifedipine.
I've had various tests with Rheumatology but my bloods come back clear. They sent me for nail fold capillaroscopy & thermography in August - The results for both came back as 'Abnormal' (I could see during the test that the capillaries were damaged)
Rheumatologist says its possibly early Systemic Sclerosis or other connective tissue disease, and secondary Raynauds, awaiting test results for RNA polymerase III.
Would be interested to know your experiences if you have finger swelling/tendon issues, did it get better or worse over time? found anything that helps or prevents it?
Thanks.
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andy7551
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Sorry you are experiencing so many difficulties. I guess I have experienced some similar symptoms and am also fairly young. Around two years ago my hands swelled to a point I couldn't really move them. Initially there was no pain, but they became very dark purple in colour and cold to the touch (I also had like a thickened yellow crust of skin on my palms, fingers and heels, that developed deep cracks in it). It got to a point even if my brain was telling the fingers to move they wouldn't. As the swelling reduced I had intense pain throughout my hands, wrists and forearms. My hands have improved a lot and I can move them quite a bit now. Still plenty I can't do with them though (can't make a full fist, pick up coins, open plastic bottles, etc). They do swell sometimes and can be so painful they disturb my sleep and it's very difficult for me to do my job. Initially I had some hand therapy, with the therapist moving my fingers to get them to work (it was agony when she did this, but it has helped). I was told the pain is not causing damage so to keep using my hands. Keeping moving them does seem to have helped and they have never gone back to being as bad as they were when this all started and I don't have splitting skin anymore. My hands are worse when it is cold e.g. recently when I have been out in the ice cold weather they have become blackened over the joints and very painful - keeping warm seems to help. My GP gives me an anti-inflammatory - not sure it helps that much, maybe it takes the edge off when my hands are not too bad but doesn't make much difference when they are really swollen and painful and doesn't seem to make any difference to the burning sensation in my muscles of my forearms.
That sounds absolutely awful StormySky, my hands have not been as bad as that - did they say that was Scleroderma, and did they put you on immunosuppressants when that happened?
I've only been given ibuprofen/Naproxen so far which didn't help with any of the hand swelling or soreness, and it also gave me bad gut pain so I no longer take them. I sometimes use ibuprofen gel on my palms or fingers when things get worse but I suspect it doesn't really change anything.
I hope you are looked after by Rheumatology. I've just bought some very warm duck down insulated mittens that are meant for mountain climbing.
In answer to your questions I have been told a few different things - connective tissue disease, scleroderma, mild systemic sclerosis, inflammatory arthritis and reactive arthritis following Covid infection (my blood tests showed inflammation, raised ANA and PM-Scl?). I think my GP is going with connective tissue disease at the moment. Initially I was treated by dermatology with steroid (prednisolone?) and hydroxychloroquine. My skin stopped cracking (I haven't had the thick crust and cracking since and the itchy rash that was rapidly moving up my legs has mostly settled). However, the Quinoric (hydroxychloroquine) tablets made me be sick and I lost a lot of weight. When the rheumatologist added methotrexate I became very ill (hospital said allergy). So, now my GP just prescribes the anti-inflammatories/pain killers. I find I do need to take a break from them as they give me a bad stomach ache after a while. The hand therapist said to take paracetamol during the 'medication holiday'. Because I said I wasn't willing to take methotrexate again rheumatology have labelled me as 'non-compliant'. I can ask to be referred back to them if I want a prescription for methotrexate but I am too scared to try it again.
Hope the warm mittens help for you - they sound lovely. Let us know if they are useful? I have some compression gloves the hand therapist gave me - I find them helpful and they also keep my hands a little warmer.
That's completely wrong to be labelled as 'non compliant' when the drugs given made you sick and you are trying to look after your own health! If you do ask to get referred back to Rheumatology, there's always the option of asking to be transferred to another Rheumatologist at a different hospital (if you have another hospital in your area) . Somebody at work last week mentioned that Methotrexate made them sick, so the Rheumatologist changed it to an injectable version (some sort of easy to use device, rather than traditional needles) which they were much better on. There's also modern drug alternatives to Methotrexate that could be explored.
I used the 'arctic' mittens to drive to work the other day - they are very bulky but yes they did the job of stopping my fingers turning white!
I usually wear ski type gloves in the car on cold mornings (with tons of clothing and a hat) but find that unless I'm really warm, my finger tips will turn white when there is pressure/coldness against them from the steering wheel/gearstick etc - definitely not the case with the mittens, the insulation in them is too thick for that! They will be great if the weather turns sub zero again, feel as though I could play in the snow with my kids with them on!
I have had scleroderma for over 20 years (I also have Raynauds and Rheumatoid Arthritis). I take Methotrexate once a week (8 tablets) and Hydroxychloroquine 1 tablet per day weekly. I was prescribed Folic Acid (1 tablet per day except the day I take Methotrexate) - it helps with side effects from Methotrexate. I also take Lanzoprazole( 1 per day) to help protect my stomach. I really have no problem with either that bother you so much. I started with a low dose of Methotrexate and it was gradually increased. I had a very good consultant at Glasgow Royal .
I have total sympathy for you. I have had similar problem for quite a few years now and was finally referred to rheumatology in 2017, but they discharged me in error. Finally got to see someone in 2021 who referred me to Scleroderma specialist. Took until May this year to finally do tests after a lot of complaining that I could not stand the pain. I don't think people understand unless they have experienced this themselves. I am now on Nifedipine which does seem to help slightly and I take 6 lots of 20mg day to help as specialist said to do this when my fingers get really swollen and sore. Sometimes the silver gloves help but I agree that when the blood starts to circulate, my hands really to start to hurt. I would possibly mention to your specialist about prescribing Nifedipine and really do hope that will help you. I will put a couple of photos on so you can compare if this is what happens to you.
Good idea Shorty100 re: photo for comparison! I'm really sorry you were discharged in error, which delayed your treatment. Nifedipine was suggested to my GP by a locum GP around 18 months ago, but he said 'no', so maybe what I experience is a little different?
That also looks so painful. I had taken that photo after a hot bath where the blood finally flowed back into my fingers. If you have blood pressure problems maybe your doctor refused for that reason, if not I am so sorry you have not got anywhere. My doctor initially refused as I have low blood pressure and my specialist wrote back to say I was needed to start on a low dose of one nightly 20mg so maybe trying through the specialist to write to your doctor again. I really do hope you get somewhere.
My hands are better than they have been for a while but are still painful and don't work properly. Ah, that could be why my GP said 'no': my blood pressure always used to be very low (although when it was last checked it was quite high)? It was the locum GP who asked me to send photos of the deep cracking in my hands who suggested nifedipine (the GP receptionist left a voicemail for me advising 'GP said no' when I phoned to ask if I could get a prescription). I don't really have anything to do with the specialist anymore - saw her once and she wrote to my GP saying systemic sclerosis and inflammatory arthritis and that she doesn't need to see me again as I can be managed locally.
Hi Shorty, I can totally relate to that picture, just how mine were earlier in the year, feel fluid filled and near impossible to flex them. I wonder if it puts pressure on the nerves in the fingers and that's why I get pain through the fingers right down into my forearms at times? At the moment my left hand is more swollen than my right, they all vary, my left little finger is about twice the size of my right, so I'll try and get a picture of that.
Glad you finally got some help, we shouldn't have to complain but I found the same, I felt fobbed off as initially no doctor/specialist or radiographer really acknowledged that my fingers were swollen for several months, and rheumatology weren't interested as my bloods always came back normal except for low neutrophils, and ultrasound scans came back negative for RA/joint swelling etc. - I went to see a private Rheumatologist in the summer out of despair, finally someone acknowledged that my fingers were swollen, and also listened to my finger movement with a stethoscope, and confirmed there was flexor tendon friction near the base of several fingers. I did go back to NHS Rheumatology but it did kick start things there as they exchanged notes with each other. I have been on Nifedipine since September, gradually increased to 20mg twice a day.
Does the swelling come down as you use
Your fingers through the day? Have you tried compression gloves to help drain the fluid? Hope you get some improvements.
Hi Andy, so pleased you got somewhere in the end. When I was on 20mg it did nothing at all and specialist said to increase gradually but it does help slightly now I am on a high dosage. I did buy compression gloves but unfortunately they didn't help. The silver gloves do help slightly if used together with a hand warmer so anything that gives any kind of relief is worth a try but they won't help with the cold outside which is rather useless to us in a way. You understand the pain especially when getting into a nice hot bath and the blood begins to circulate. My specialist said she didn't think my hands were swollen!! I even sent her photos via email as per her request. Do you get ulcers/chilblains too? She did say she wasn't sure what the lumps on my fingers were and I recently met someone who also suffers from Scleroderma and had exactly the same and told me they were ulcers, which her specialist diagnosed straight away. Think we just have to be lucky in getting a decent specialist.
A picture from much earlier in the year, red spots that are raised but seem to be under the skin, they don't burst and not too itchy. I have them now on the fingers that are more swollen. GP gave me a steroid cream at the time, not sure if it helped or not. Also recommended Dermol cream for dry skin, I use it all year round now.The last two winters my toes were often blue/purple, the skin turned red and sore and the skin blistered and peeled off badly, even under the nails.
I have something similar but not as bad as yours. I think what is confusing to so many of us is the fact that we don’t have to display everything symptom linked to Scleroderma to have it. Some people test negative for ANA but can still have scleroderma, usually limited scleroderma but a lot of specialists don’t make it very clear. I tested negative but have telangiectasia - mostly on my face which I would presume are the red spots on your hands I have had tests this year which shows heart and lung disease, avascular necrosis and calcification which are all linked to scleroderma. I’m pretty sure you don’t have to have all the symptoms to have Scleroderma but I would still try for Nifedipine as it definitely gives some relief.
Similar to yours but all under the skin and yours looks quite fierce
hello, how you are well. Do you mind if I ask what tests did you do for your heart and lungs? I am going through a lot of symptoms but my rheumatologist says it’s just primarily raynalds. I am not that happy with this diagnosis as I have swollen fingers every morning (but they reduce in sweeping about an hour after I get up) my hands are always blotchy colour. I have telangiectasiaon my nose and cheeks. I really Am concerned and I feel I not been taking seriously by my gp and rheumatologist. Also I have hip pain it might be in my head. Why did u get checked for avascular necrosis?
That looks uncomfortable, and blue/purple toes with peeling skin sounds painful. I do hope you are able to find some relief. I don't have those symptoms (lumps/ulcers). The area round my knuckle joints can be quite blackened at times, but mostly it is just hand swelling and aching. I think what I have may be slightly different?
when I have a fingers attack is either cold/stress or both. I wear thin gloves designed to keep the heat in my fingers to bed at night and always wear long underwear to keep my core warm
I'm sorry you are going through this. My first symptom (in 2010) of Scleroderma was swollen fingers that turned blue when I got cold. I was misdiagnosed with Rheumatoid Arthritis. I tested negative for Scl70 and Anticentromere and was borderline for RA. In 2016, my normally 110/70 blood pressure shot up to190/155 and didn't come back down. I was put on Losartan, which brought it down a little and caused a cough, so I was switched to Nifedipine (60mg in the morning). It helped with the swollen fingers but they didn't go back to completely normal.
In 2017, I finally found a Scleroderma Specialist who tested for ALL the Scleroderma antibodies.. I was 130 for RNA Polymerase III (80 is high). He explained that, with this antibody, I am at high risk for Scleroderma Renal Crisis (SRC) and breast cancer. Sudden high blood pressure is a sign that you are going into SRC and I was told to monitor my BP frequently. RNAPIII usually has fast onset extensive skin involvement, something I fortunately don't have.
In 2021, my BP was not staying down for24 hours so my Cardiologist added a 30mg Nifedipine at bedtime. This seems to have further reduced the swelling in my fingers to the point that rings I had made larger are now literally falling off.
My fingers still turn blue when I am even slightly chilled. I keep Hand Warmers with me always and use my heated jacket all the time. My right index finger is still swollen but not nearly as much as it has been. This finger tends to want to get a digital ulcer - it will swell tremendously overnight and get very red - a couple rounds of Bactrim antibiotic has kept it in check.
I have had no adverse effects from the Nifedipine and I feel that it's keeping me alive.
It sounds like you are seeing a good doctor who is doing the right testing. My best wishes for successful treatment.
Sorry to hear you’ve been in so much pain at such a young age (I’m just a tad younger than you).
I have had limited systemic sclerosis (anticentromere antibody) and Raynauds for 6.5 years now. About 1-2 yrs ago I started having very similar symptoms to yours - severe finger swelling and pain (you can see in the pic). I had to lose/cut out my rings due to the finger swelling and didn’t have a good grip on everyday items such as toothbrush, hair brush, etc I was also living in pain, especially in the first few hours of the morning (it’s very typical of inflammatory arthritis). I knew I had to find out what was happening as it was becoming progressively worse over time . I got myself tested for rheumatoid arthritis and it came back very highly positive . I started taking anti- inflammatories first (didn’t help), then NSAIDs like naproxen (didn’t help), then hydroxycloroquine (didn’t help), then steroids (this really helped but had to taper it off over time) and more recently was started off on methotrexate ( seems like it’s working though early days)
My point is - get yourself properly and fully tested as auto immune conditions are often related . Definetely check yourself for RA . Good luck!
Hi Tayna, hope you are doing OK. I've had quite a few rounds of blood tests by Rheumatology over the last year, always been negative for RA and anything else, although I believe the lastest tests may of showed a slight ANA result, but I haven't been asked back in to find out more yet, and I think the RNA polymerase lll result is taking a long time to come back.
Also I was sent for lung function tests a couple of weeks ago, but that came back normal.
I've been tested for inflammatory markers several times, each time they add some extra tests, as far as I know they were testing for all Immune system diseases. I've had several Ultrasound scans of hands and wrists, even MRI of my hands, they didn't show any active synovitis in the joints so it can't be inflammatory arthritis. What I've learnt from scans is that general finger swelling/puffiness/sausage finger does not register as anything on a scan unfortunately. Nor does tendon irritation or finger stiffness. Rheumatology said they are leaning towards a diagnosis of early Systemic Sclerosis or undifferentiated connective tissue disease (based on my capillaries and circulation being abnormal) but needed further test results which I've been waiting months for. They won't put me on immunosuppressants as they say overall I would feel worse.
I've tried various anti inflammatories, they don't help. Taking Nifedipine, I think it helps slightly with circulation to fingers and toes.
I eat a healthy anti inflammatory diet too - It takes time but I do think it works - I did it last year but then naively quit it at Xmas because I felt 'better' - but then a week later my symptoms became worse than ever.
I thought i'd writteh this myself for a minte! Exactly the same symptoms- very swollen hands, continual pain in joints but also something that feels like nerve pain in the skin.
I have immense difficult now with anything that requires dexterity- Im always dropping my contact lenses. And I cant do tasks like cooking. At least I can type....
But the pain is so very debilitating. Last week I could have cried with the pain. The cold affected me so badly.
Really sorry to hear that Jessica. That sounds a lot like how I was earlier in the year- had to give up cooking cleaning, lifting anything, driving , although it did gradually settle down over a few months (without any treatment) and I was able to start doing things again (albeit carefully) How long have you been suffering? Have you seen a rheumatologist at all, are you on any treatment? It's so hard because no one else can really understand what it's like.Back then I bought a few kitchen gadgets to help opening ringpull cans, jars, screwtop etc, really helpful, I still use them now.
I’m similarly placed … not a good place. My rheumatologist remains on the fence with recommending treatment in spite of all the symptoms, but lack of confirmatory lab tests. How worrying to think treatment may make us more sick. I’m now beginning to assume “this is as good as it gets” and try to live with it. At my age and after a good life I can just about accept it but I feel for my family picking up the slack with tasks I just can’t do or really struggle with.
My worst symptom is the sensitivity in my (sausage) finger tips. Everything feels sharp. Thin indoor gloves help. My lips are tightening and mouth sensitivity is an unpleasant recent addition to the list.
We are all distinct individuals where potential best treatments can be elusive.
Now in my 6th week of mycophenalate and testing bloods fortnightly my renal results are dropping off. Rheumatology contacted me at home to stop all tablets ( Naproxene and mycophenolate).. I was unaware of any implement but also little positive effects.
Starting to experience slight issue with visual focus
Thanks for this, I'd not heard of this before, it does sound promising. Do you have any experience of it? It seems to be used for some very specific life endangering conditions on the NHS, but so far I've not been able to find anywhere offering it privately. I found a couple of studies where it had been used for advanced Systemic Sclerosis and it had reversed the major symptoms of breathing and swallowing problems.
A bit of an update - I managed to get through winter reasonably well with Nifedipine 20mg x 2 daily and keeping my core warm at all times, with only one instance of extra finger swelling/rash (which I now think may of been chilblains, see old pics above). My toes were perfect, no discolouring or rashes/skin peeling issues of the previous two winters.
In February a new issue was a finger nail fold infection/paronychia that took a month of different antibotics to clear, lots of finger swelling, it got under the nail so half the nail was detached and very precarious for six months while it grew out, I had to cover it with a loose plaster at all times - so I'm very careful about keeping the nailfolds in good condition now, moisturising etc and using gloves to prevent dryness when washing up etc.
Early in the year I had a lung fuction test and heart scan, both came back with good results fortunately, I think I have to have these tests once or twice a year .
I've not seen my Rheumatologist for well over a year , still have questions to ask about test results in letters and outstanding test results.
Blood test 2021 - immunoglobulins mildly elevated IgA at 3.03 g/l but normal IgG and IgM.
Blood test 2022 - immunofluorescent ANA was positive with a speckled pattern at titre of 1 in 100.
Test for RNA polymerase III - results not communicated.
Through the spring/early summer it seemed my fingers had been very slowly improving, less swelling and more flexible in the mornings, less pain (but still avoiding lifting and heavy gripping)
But as per last summer, I get bouts of forearm pain and stiffness, wrist twinges and soreness, and the usual swelling of the hands and forearms in hot conditions, as more blood is diverted to the arms but presumably can't flow properly. There are definitely issues that occur more in the spring/summer, that aren't a problem in winter, almost as if heat and more blood flow & pressure is irritating the already irritated tendons/ligaments, and that cold weather is soothing (as long as theres enough blood flow to prevent raynauds!)
My worst problem is now my right thumb, my thumbs were previously unaffected but since June I've had pain around the end joint, just below where the 'thumb print' is, and swelling in the end part of the thumb, soreness in the fleshy part of the thumb, and where the thumb tendons run along the wrist/forearm, soreness and sensitivity there. I think it's tendon related problems again like my fingers, and some friction there. Since June it has improved a bit then got worse several times of its own accord, I can't open or grip things with it, it gets irritated. The other thumb seems to be going the same way, but no swelling yet.
I contacted the Rheumatology nurse, got physio appointment for it, but it's those standard post-injury stretches and exercises that makes it very sore, just told do what I can, reduce the reps to a manageable level, when swelling is down.
So in summary I was doing ok and felt I was in control and knew what my capabilities were until the thumb problem came about, so restricted again!
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