Can anyone identify with this? I don't get white or blue fingers. It happens often when I'm out walking or just when my hands start to feel warmer (I have cold hands and freezing feet most of the time. ) My hands start to feel like they are swollen and throb a little. The rest of the time my palms and fingers are pale.
Not sure if the photo shows it very well.
I'm under investigation for connective tissue disease (Lupus at the top of the list I think) and have had systemic symptoms for past few years.
Thanks.
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Poppyfields65
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Mine go like that too at times....but also go purpley blue or white depending on how cold it gets ...or even when it isn't that cold for some weird reason....but it is down to Raynauds and its fascinating colour changing effects.The swelling and joint pain is also present in my fingers and I believe, for myself, it is osteoarthritis at work....but you do need to get it checked out for proper diagnosis. I have Systemic sclerosis and the secondary Raynauds is a side effect on this illness. So ..good luck going forward anyway pet.
Thank you so much. It's interesting what you say as I currently live in a hot climate and so don't experience very cold weather. I'm waiting for a chest xray and then I go back to the rheumatologist (specialist in Auto immune & rare diseases) for the results including bloods.
I have this and have erythermalgia and joint hyper mobility , been told that's it so far , still think there's something else , but they look exactly like mine!
Mine too! I have been wondering same thing. So far diagnosed wrongly six years ago with RA, rediagnosed with Sjögren's last year and about to be investigated (nailfold capilliary test) for secondary Raynauds and possible Scleroderma (as well as confirmed Sjögren's). Very helpful to confirm that this bizarre mottling relates to Raynauds. Although mine is much more pronounced when my hands move from cold to warm I seem to have some permenant mottling too? I have asked on Lupus UK before with similar image to yours and been told it is Livedo Reticularis - maybe relating to APS/ sticky blood. My antibodies for this were previously negative though. I'm hypothyroid as well as having Sjögren's.
Hi. I posted on a lupus Facebook forum a year ago with a similar photo. Loads and loads of responses, most people said raynaud's, a few said livedo reticularis, but when I looked at photos of it I didn't think mine looked like it (or raynaud's for that matter!) I showed my GP who said it was nothing, so I didn't show anyone else until seeing the auto immune rheumatologist specialist last month.
I've been diagnosed with Inflammatory Bowel Disease and b12 deficiency in 2015, Cervical Spondylosis in 2016 and following the neurologist suspecting a secondary auto immune to the IBD he sent me to an ophthalmologist a couple of months ago where I was found to have dry eyes (he was suspecting Sjogren's. ) Ah,..... so thats what's been causing my eye issues the past few years!!!
I've had systemic symptoms for many years now, gradually getting worse.
I've had a positive ANA 3 times since it was first tested in 2015. The Anti dsDNA and ENA panel has been negative 3 times, but has just been repeated again with another of the APS antibodies as only the anti cardiolipinwas done last time (1 year ago) (IGM was 1 off being positive) this time lupus anti coagulation is being done aswell as anti cardiolipin ( beyond me why they don't do all 3) anti bodies for RA being done aswell plus loads of others including thyroid study. Chest xray in a couple of weeks for breathlessness and chest pain.
On the forms for the xray and note to the haematologist she wrote suspected connective tissue disease - Lupus?
I'm hoping to get some answers from this specialist as to whether there really is something else going on or whether it's the IBD causing all the symptoms. Corticosteroids prescribed for the IBD resolves other non gastro symptoms like dizziness and all over paresthesias and makes some of the other symptoms abit better whilst taking them. Nothing seems to help the fatigue (sometimes debilitating) and joint pain and muscle aches though.
My mottling comes and goes, I don't have any permanent mottling.
Thank you for telling me your story.
I'm on the RA, lupus, sjogren's and APS forums too for now!
Oh that sounds like a fairly familiar story to me.
I have to say that Sjögren's seems to be the most badly underestimated and underdiagnosed of the rheumatic diseases and there is no targeted treatment for it. In fact doctors are fearful of treating it with immunesuppression because of the increased risk of non Hodgkin's lymphoma so it often goes untreated apart from with Hydroxichloraquine. Mine was diagnosed last year by lip biopsy and I'm on Mycophenolate - but I have to admit that my Sjögren's symptoms continue unabated.
Mine is seronegative i.e I don't have the specific antibodies to any one disease i.e Ro and La, but my ANA was a clear positive last year with a nucleolar pattern - pointing more to Scleroderma than to Sjögren's. However my lip biopsy was 100% positive so I do certainly have this wretched disease, which everyone imagines to be just dry eyes, mouth, vagina and a bit of arthritis. For me however it's a multisystem connective tissue disease in its own right, despite being seronegative, and my rheumatologist, endocrinologist and neurologist all agree that it's the same for many sufferers and is the disease most famed for this terrible fatigue. Hope this might be useful although you probably know it already. Best of luck in your pursuit of a diagnosis and treatment.
Hi. Thanks for the info. I started reading about sjogren's when the neurologist mentioned it and it does sound very nasty. I joined a Facebook group to ask a few questions of how symptoms manifest and I saw on there how people get frustrated with people thinking it's just dry eyes and mouth. I'm sorry you have it but in one way a relief to have a firm diagnosis via the lip biopsy?
My Ana march 2016 was 1:320 speckled fine dense. Prior to that it was 1:320 homogenous and the first time was 1:160 homogenous both in 2015. I'm currently on steroids and she said some results maybe skewed.
I was just Googled images of livedo reticularis palms and there are a couple of pictures there that look like mine and I've remembered I posted on APS forum here last year and most said livedo reticularis.
Anyway I will ask the rheumatologist when I go back for results. I'm living in Spain currently but moving to england later this year so will probably have to go back through it all anyway, which I'm not looking forward to.
My life has changed as I'm sure yours has these past few years, I was very active/atheletic and now struggle to walk the dog for 30 mins.
Gosh good luck with coming to England and rheumatology. I'm in Scotland - moving onto the mainland just now after 28 years of island life in the very far north - and Raynauds has been hellish because of the additional wind chill factor here, which seems to make gloves almost redundant at times!
I think Sjögren's is a sad disease because it tends to be diagnosed as a secondary to others but those with it as their primary disease often get forgotten about, left behind by rheumatology because of the increased Non Hodgkin's risk and the fact that the majority of those affected (or diagnosed!) are women of a certain age - so doctors will foist additional or alternative diagnoses on them such as perimenopausal, anxiety disorders and Fibromyalgia. Im lucky that my inflammation levels have always been sufficiently high that I've been taken seriously. My ANA was equivocal until I was taken off all DMARDS and steroids and then came back 1:320 last year. It probably will have gone back to equivocal now though because of the Mycophenolate.
I'm very glad I agreed to get the lip biopsy done because I needed the clarity - but having previously been diagnosed with and treated aggressively for RA, I've been astonished at how little my GPs and rheumatologists seem to know about Sjögren's. Very few of my doctors even seem willing to utter the name and just refer to it as "your connective tissue disease" if at all. Maybe it's because they can't pronounce it properly but also I think it has to do with the whole concept of systemic dryness - there is just something that people struggle with in this idea? I find it so hard to talk about to friends and family (in fact I don't!) whereas with RA it was relatively easy to refer to because many more people know what it is at least! X
It all sounds awful and i empathise with you on all levels. It's a similar thing with IBD about the people just not getting it '"thing" and I've found some relationships with family and friends have changed because of my disease and whatever else may be going on.
I hope they can find a medication that suits you better in order to get some relief for some symptoms.
And if you find out what your mottling is... Let me know!! I mean if it is raynaud's or livedo etc...
Best wishes for forthcoming tests. I'm hoping I'll be called back for my results soon after the xray which is early May, but everything takes so long here and it could be June. The summer here is a nightmare for me and gets worse each year. I cant tolerate the sun and heat these past 3 years many, symptoms flare up bad and I used to be a sun worshipper.
But will stay to see things through with this specialist and move by Sept for kids to start college in Manchester.
I've got that website saved in my Sjogren's folder bookmark but not read that page. Will do so this morning. Thanks. X
I couldn't cope with that kind of heat either - I'm very fair skinned! But the cold just floors me these days too. The thing my old GP said about mottling (and i do also have Livedo in my knees and feet that arrives when my skin is exposed to any drops in temperature) is that it might be small vessel disease related. And as I've said mine looks exactly like yours only the finger pads and edges of palms are permenantly affected now - but just show up much more noticeably when my skin is exposed to temperature changes. I'll follow your progress too!
• in reply to
Ps I just posted an image of my own hand showing similar blotching (not easy to photograph though!)
My hands look like that to. Especially when i do dishyor shower. Have you found a answer to what it is?? I also get what looks like Livedo Reticularis on my legs. And im am dizzy alot and tired. Having no luck with drs.
Hi , I don’t get much of the blue finger either. I have MCTD with the systemic Lupus and Systemic Scleroderma. I have severe Raynaud and what you showed in the pictures happens to me and they said it is from they Raynauds.i also developed crest and have Fibromyalgia and more. With the lupus or Scleroderma anything really that is connective tissue we don’t all have it exactly the same , but what happens to your hands is one of my symptoms. Remember some people look more blue or red or even white depending on their skin tones as well we are not all the same color or tone . So it not going to look exactly the same. That blotchy thing that is does I was told that is definitely Raynaud the Scleroderma part of your disorder. It can even happen on your arms feet legs . I was told to try and always keep my hand good temperature because every time it does that unfortunately it can cause damage to the tissue/ muscle/body part usually our hands and feet for most people that all it affects. Some of us our systemic and we get too cold we can breathe our vessels constrict and cut off supply to our lungs. If you do have systemic features and you have never felt what I am explaining about the lungs I hope and pray you never do . But before I started to get it in my lungs I only had what you had in your hands and I got worse I was told to keep hand and feet warm to prevent profession I wish I knew then . Carry gloves all the time and I always carry a soft stress ball made of sand instead are best ones because they are not too hard. It helps when they get stiff , tight , swollen , and so painful . Just know your are not alone and I hope you feel feel.
I get the same response from overheating. My allergist says it's histamine related as my body warms up/overheats. I am also allergic to the cold and have Sjogrens. In the winter, when I come inside my body overheats after I have been in the cold for more than 20 minutes. It is practically burning and if I accidentally scratch it, it will become a full blown hive and can sometimes be my whole arm and or leg. The core of my body that was not affected by the cold would not have this reaction. The tips of my fingers turn red while the palm is white and often itchy and swollen. It only happens in the hands though. This happens most while I walk, but does not happen while I bike. It is not Reynauds for me.
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