Hi all đ I'm new here, and I joined because I'm trying to get answers as to what's causing the chilblain-like lesions I get on my fingers and toes, and whether or not they're linked to my erythromelalgia. I've seen a rheumatologist, and they suggested a few things that could be causing them:
Chilblain Lupus
Raynaud's
Other Autoimmune/Immune issue
Vasculitis or something similar
The only symptom I have that might suggest Raynaud's is these two patches of white I sometimes get across my knuckles (see photo). Bizarrely, only on my left hand, and only ever these two fingers. The white patches do appear more in cold weather, but not exclusively. And they only started appearing in my mid twenties, about 10 years after the chilblain-like lesions started appearing, and also after I already had erythromelalgia.
The rheumatologist suggested I get nailfold capillaroscopy done, as this can distinguish between primary and secondary Raynaud's (if I do in fact have Raynaud's), which might in turn help work out what's going on with the chilblain lesions. Does anyone know where I can get nailfold capillaroscopy done privately in the UK, and how to arrange this?
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Goldcrest100
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hi, if you are in London, I recommend Dr Gayatri Mittal at the London clinic. Has your rheumatologist done a simple ANA blood test to check for your markers? If you do have an autoimmune disease, thatâs the first step. You donât have to do this privately, and can do this on the NHS. What comes is the interpretation of the bloods and the follow ups (which is where I would contact dr mittal to definitely diagnose following more tests). She can then refer back the NHS; to the best consultants, specialising in that particular type of connective tissue disease for ongoing case management and next steps, tests etc. All rheumatologists arenât created equal. And auto immune and ctd all present differently in different people.
I'm not in London, but I do travel there occasionally, so that wouldn't be an issue. I think I've heard of Dr Mittal actually, I'm not sure where, but I definitely recognise the name. Thank you so much for the advice! My GP (at the recommendation of local rheumatology) has done blood tests - ANA, CRP, ESR, Rf etc - all came back negative. So bloods-wise, it doesn't look autoimmune. But there's 6 autoimmune diseases in my family, and also some of my other symptoms seem possibly immune-related, so they're not ruling it out yet.
It's a bit of a long story as to why private rather than NHS, but essentially although my GP is great, I can't seem to get referred to an NHS rheumatologist. And after 10+ years, I just want answers. So I saw a private rheumatologist recently, and they said to get nailfold capillaroscopy done, but didn't refer me for it themselves - they just said it's up to me whether I decide to have it done at any point. I've decided I do want to look into having it done, but wasn't quite sure where to start đ
Hey Goldcrest I had a capillary test done in the Royal Free London mine is because I have raymaulds secondary brought in by systemic sclerosis your rhemotologist should be able to refer you for this test itâs a very simple one and causes no discomfort but can indeed give you a lot of answers, it takes a few minutes to do unfortunately I live in south west of England and had to travel over 2.5 hours to get it done as itâs not offered in many places you definitely need a full screen of bloods to check markers ANA to narrow down what is causing your symptoms so I would start there sadly as all rhemotology departments can vary dramatically it took me three years to get answers but you have to push. Vasculitis was one of the first things mentioned to me but with a positive ANA test followed by other results from bloods it was narrowed down to systemic sine sclerosis and RA and raynaulds it seems very daunting get a book and write down your daily symptoms no matter how minor this really helped me as in a short appointment you forget all the things you need to say . If your unhappy contact them again and request another appointment ask for a full autoimmune profile to be done we are all here for you I know it was overwhelming and scary when I was awaiting a diagnosis xxx
Hi, thank you so much for your reply! How long did it take for you to get your appointment at Royal Free once you'd been referred, if you don't mind me asking? I've had blood tests which all came back negative, so it may well be that it turns out not to be an autoimmune issue, but currently they haven't fully ruled it out (partly due to my symptoms, partly due to family history). I'm so sorry it took you so long to get your diagnosis, but I'm glad you finally know what's causing your symptoms. Well done for keeping pushing for answers.
I was referred in the January and seen in London in the July nothing happens very fast unfortunately but it maybe be different for you depending on your area etc I hope you get some answers soon
Hi I started with similar last year totally white feet & so terribly cold. Iâve always had cold feet but not the whiteness. Then redness once feet get too hot. Iâve only had a few white marks on my fingers though. My Rheumatologist referred me so I have no idea why yours canât. I was seen quite quickly & a nail fold biopsy confirmed primary Raynaudâs. Iâve been prescribed Nifedipine which seems to help. Why donât you speak to your Rheumy nurse & ask if your rheumatologist can refer.
I just had one appointment with a private rheumatologist, so I'm not really still under their care, and I don't have a rheumy nurse. It was just one appointment to try to get to the bottom of what's causing the lesions on my fingers and toes. So I can understand them not referring me, they just said that it's something that might help give some answers, if I want to get it done at any point. I'm glad Nifedipine is helping your symptoms, I have heard a few people mention that it helped them too.
Sorry I didnât realise your situation Iâm brain dead today. How frustrating for you. Would your GP consider referring you to either Rheumatology or Vascular department?
No need to apologise at all! I feel brain dead most days, so I can relate to that. My GP did write to local rheumatology, but other than ordering some bloods, they weren't sure what to do with me, so wouldn't take me as a referral. I think I'm just going to have to find someone myself.
Iâm sorry that I donât know anywhere that could help. Mine was done at Leeds hospital NHS. I hope others come up with some suitable suggestions. Good luck.
Chapel Allerton are brilliant. I had a nailfold capilleroscopy done when it seemed like a new toy, because there was a crowd watching! It confirmed Secondary Raynaudâs and now Iâm diagnosed with SSc. Sending a PM x
Yes they were very good at Chaple Allerton I had nerve conduction tests then had a Capillaroscopy & then saw Dr De Marco who was very nice & was then diagnosed.
Royal Free do private capillary tests along with thermography in their micro vascular lab I believe. Youâd need a referral from your GP though. I live in Scotland but went there last year privately for a one off consultation with Prof Denton. I am already under rheumatology here but my consultant isnât a scleroderma expert so they encouraged me to do this as, despite an antibody and severe GI involvement, mine doesnât present as skin tightening. Very different to your situation of course but I was offered the chance to book a private capilleroscopy while there but the Prof suggested by email that he do a hand held dermascope first. Then I would only have the micro vascular testing if he couldnât find anything. Two years previously in my local hospital my nailfold capillaries were entirely normal. But when he looked himself they showed unequivocal signs of early Scleroderma so he was able to diagnose me on the spot.
I have Erythromelalgia too but over the years my late onset Raynaudâs has got worse and my EM hasnât. I sometimes think Iâve had EM for much longer as my hands have always burnt up and I used to have severe pompholyx eczema in all the crevaces and up all my fingers caused by heat. I guess this is how I knew my Raynaudâs was progressing because nowadays my hands, feet and other parts often feel frozen, no more eczema. I do get the typical colour changes but not always classically in my fingertips and pads where my EM is most active. So your patches of white could be early Raynaudâs I would think but with both co-existing they can perhaps present differently?
Thank you so much for all this information OldTed, I really appreciate it! I knew Royal Free did some testing, but I wasn't sure exactly what. This sounds like something I'll definitely look into. So are those three separate tests - dermascope, capillaroscopy and thermography? Do they all look for the same thing, or different things? Sorry if it's a stupid question, I'm quite new to all this. No-one had ever suggested I might have Raynaud's until recently, so I've only just started looking into it all.
That's interesting that you don't have skin tightening, I don't know much about Scleroderma but this is one of the symptoms I think of when I think of the condition. It's amazing how conditions can affect different people in different ways isn't it? I see that a lot with Erythromelalgia - you can see 10 people with it and they all have a slightly different presentation. Oh wow, so you had testing two years prior which came back normal? Is that because of accuracy issues with the first test, or is it that it takes a while for that type of thing to show up, so it didn't show up until the recent test? Either way, I'm glad you managed to get a diagnosis from Prof Denton, that's great. Not great that you have Scleroderma obviously, just great that you could get answers.
That's really interesting to hear your description of Erythromelalgia and Raynaud's, and how your symptoms have shifted over the years. My symptoms aren't the same, but I'm definitely seeing some parallels. My Erythromelalgia has got worse over the years, but the white patches (so far) haven't. Sometimes my hands or feet will get cold, but generally I think that's just because I have to stay cool for the Erythromelalgia. It does make it a bit confusing trying to work out what's causing what!
The tests are all for Raynaudâs but the capillary one distinguishes primary from secondary for many - but not all. A vascular medicine dr I was previously seeing tested them with same magnification and similar expertise and said my normal capillaries were likely due to my EM keeping my fingertips so toasty! Two years is nothing in rheumatology - in fact I was told by him that if normal as mine were then not likely to change or need re-testing for ten years! I guess in my case this showed the severity of progression. As far as Iâm aware they are only really interested in looking for Systemic Sclerosis with capillary tests but think it can show other CTDs. Itâs rare not to show much in skin like mine but Iâm hypermobile so he blamed or credited this!
Good to know, thank you. Oh really? That's so interesting! So if you didn't have EM, your capillaries may have looked different? Oh wow, I see, so from the time you had the first test until the time you had the second, it had progressed so much that they could now detect it? That's interesting to hear about the hypermobility thing - no-one can seem to agree whether I'm hypermobile or not đ if I am I certainly have mild symptoms, my dad is more "obviously" hypermobile, and his skin is certainly very unusual, so I can see how it might affect tests etc.
I'm not sure. I did join an EM group once and there was a chap who insisted that his EM was diagnosed in infancy with nailfold capillary testing and that both his EM and Raynaud's were of an incredibly rare hereditary type. But I've met two people getting Lidocaine (not same as Iloprost) infusions for EM over the last 4 years despite no underlying cause or other symptoms. So I'm guessing primary EM is actually more common than we know, although obviously much rarer than Raynaud's. Same with hypermobility.
I certainly wasn't the gymnastic type of hEDS, more the very uncoordinated hyperallergic pale and peaky child with bruises everywhere and crumbly overcrowded teeth . It is only because it's masked my SSc skin on backs of my hands that it was finally confirmed last year. I don't know if EM actually mitigates the damage of secondary Raynaud's or whether Hypermaobile Spectrum Disorder mitigates the impact of Systemic Sclerosis throughout. But I like to think they both do mitigate the harm each can cause as both are polar opposite extremes. The only serious internal Scleroderma involvement I have so far is to my gut throughout. And as a newbie to Stoma I can also now testify that Raynaud's and EM can and do affect the gut when it's exposed to extremes of cold or heatđĽśđĽľđđ !
I agree with you there, primary Erythromelalgia (and just Erythromelalgia generally to be honest) are definitely more common that people think. Not common obviously, but definitely not quite as rare as is often stated - I think it just often doesn't get diagnosed.
I don't know either, but if they do in some way mitigate each other that would be handy! Oh wow, well that's one way to find out! đ I would never have thought about EM or Raynaud's affecting the gut.
I wonder if my nailfold capillaroscopy was abnormal because I had Raynaud's for about 10 years before the Erythromelalgia started? Although it was only when the EM began that I suddenly had visible nailfold haemorrhages and sore skin next to my nails.
For  Goldcrest100 - my capillaroscopy was abnormal last year, but my blood tests aren't really showing an awful lot at the moment, so I ended with a diagnosis of Undifferentiated Connective Tissue Disease (UCTD). Symptoms, some blood test and other tests I've had point more to Lupus, SjÜgrens and/or Antiphospholipid syndrome, but we're not sure yet. UCTD is a proper diagnosis in itself and you get similar treatment to a specific CTD, but I think some of us sort of feel like we're in no-man's land with it at times. We shouldn't really and it's possibly more to do with the NHS being so stretched. I had my nailfold capillaroscopy by NHS in Liverpool, if that's of any help to you (and my rheumatologist was mainly based in Chester). I'm pretty sure someone in Manchester NHS would do it, as they have a Lupus Centre of Excellence.
Hi FredaN, thank you so much for this, it's really helpful. I suspect I may end up in a similar position to you, since I have various symptoms and test results that point to it being *something* in this realm, but my blood tests so far don't show anything specific. It feels like I don't quite fit in any box, so I keep being passed from one person to another. It's also hard to know what's linked to what - I have no idea if my Erythromelalgia is linked to the chilblain-like lesions I get, and the white patches on my fingers, or if they're all separate issues. Also when I get "outbreaks" of the chilblain-like lesions, it's often when I'm run down, and feel very ill - like my immune system is under strain. Exhausted, bone pain, sore throat, inflamed lungs etc. I also get them when it's colder, but not so cold that it would warrant "normal" chilblains if that makes sense. Anyway, hopefully I'll get to to the bottom of it eventually!
Hi there, you have plenty of input for your question, which is great. I also have erythromelalgia, Reynauds, other problems and diagnosed as UCTD at the Royal Free as NHS patient ( I had to do drive the whole process myself, like many others on this forum). I too used to worry about "negative " blood tests. In the end, I had 2 autoantibodies found (one rare, one not) only at the RF - because their testing is so extensive. I was ana negative the last time, but that doesn't exclude me apparently. Best wishes.
Hi there, thank you so much for this information. It sounds like the Royal Free has a great service for conditions like these. Can I ask, did your GP refer you there based on your Erythromelalgia and Raynaud's symptoms, or was it because you had a suspected autoimmune condition? I'm glad they managed to find the two autoantibodies, it's interesting to learn just how many there are, and how they can be missed without extensive testing.
Hello! to answer your question, I asked my GP to refer me to the Royal Free as i had erythromelalgia (EM) confirmed at my local hospital rheumatology (that inital referal was due to joint pains in hands and feet plus burning pain, which my GP had assumed was OA, possibly RA. ) they were not interested in the reynauds. Its a bit of a long story...... But after 7 years of misdiagnosis of various types of arthritis I found my diagnosis on Google in about 5 minutes! I plucked up courage and asked the local rheumy if this was correct and he agreed (and put it in my clinic letter) but he failed to offer help or tell me who would help. I asked him if it was primary or secondary EM and he got snotty. No tests at all, discharged! This wasnt good enough so I joined the erythromelalgia warriors facebook group and they kindly provided a list of consultants familiar with EM . So that is how I did it, my GP didn't argue this tertiary referal thankfully. I live on london outskirts so the journey is OK. My blood work showed anti Ku antibody and anti smooth muscle antibody. I manage Ok really, now I'm retired. sorry to write such a long essay!!
Hi, I forgot to add that I have had nailfolds done twice at RF over 5 years. Not scleroderma pattern but non-specific abnormalities. I'm little wiser! The most likely way to get it privately as part of a whole private assessment and consultation, which will be expensive !
I donât know if this will help but I have heard Raynaudâs experts on SRUK webinars saying that thumb involvement in Raynaudâs attacks is a bit of a red flag distinguishing secondary from primary. Apparently the arteries and veins that supply blood to our thumbs are different to those that supply the rest of our fingers which sets thumb involvement in Raynauds attacks apart. I canât recall if it was flag for SSc or less specific eg Lupus, Sjogrenâs, Vasculitis etc. And of course EM wasnât factored in as part of this equation on these webinars although I believe it got a mention. Anyhow I thought I would add a couple of photos to demonstrate how mine has changed to include thumbs since it first started 12 years ago - just in case it helps you and others here who still arenât fully diagnosed:
And another of my EM every morning when I wake. You can maybe just make out the hallmark subcutaneous scleroderma red T spots in each finger pad and in my palm? Also I note I have some small white patches like yours so maybe typical EM?
I'm fairly sure my thumb is involved with Raynaud's, but can only find photos of my hands when they're red and swollen. I'll have to pay more attention next time I have Raynaud's. My thumb is definitely involved with Erythromelalgia.
I noticed sometimes mine starts out patchy, which I guess could be what the white areas on Goldcrest's fingers are? It's really hard to tell from photos - many of the photos of my hands don't look as red as they do in real life.
And this is what they look like at their worst, I think. The skin next to my nails looks horrible & wrinkly when it calms down again (sometimes that area is just really red & sore regardless of Raynaud's/EM)
Iâm glad you replied because I wanted to tell you that, if youâre not a member of SRUK, the latest magazine has an article about a seven year old boy called Edward and his condition, Parry Roberg Syndrome with en coup de sabre which I know you have as well. The article is about his journey to diagnosis, which include finding some apparently incidental white matter on his brain and the powerful treatments heâs now on and how difficult these are for him and his family. Itâs very worth joining for anyone with Raynauds, even if mainly for the members magazine and to attend and possibly ask questions at their zoom webinars. X
I follow them on social media, but I'm not a member. I did look up that Parry-Roberg syndrome, but can't actually remember what was specific about it. It might be that it's more likely to be that if it appears as a child and more connected to autoimmune diseases as an adult(?) Again, there's a lack of info on adults getting it, because it seems more common in children. I'll take a look at joining, as it would probably be useful.
I thought Gottron's papules were quite long lasting, though? I might be wrong and these things are always so rare, it's hard to find this info out! Mine tends to be more transient/warmth kind of rash. The patchiness is there for 10-20 minutes before going completely red hands, then (eventually!) going back to normal or Raynaud's. I do wake up with redness over joints very often, but it always seems to go down after an hour or two. I'm not sure if that's Erythromelalgia or inflammation. If it's the redness next to my nails, that does seem to be Lupus thing, I think.
The rheumatologist who did a thorough examination of me spent ages looking at my hands and while she's more of a specialist in Systemic Sclerosis, I'd hope she'd know the difference between all these things (red fingers crossed). I have no idea what or if they can do blood tests for Dermatomyositis. She was certain that I have psoriasis, but not psoriatic arthritis anyway.
FredaN - your first group of photos are interesting, with the distribution of redness being more on the knuckles. I've seen a lot of people with Lupus who have hands that look like this, and I can see what OldTed means in terms of Gottron's papules - the redness distribution does look quite like dermatomyositis. I think you're right though that Gottron's papules are more long lasting. I'm sure lots of these things aren't all that separate, there must be lots of links between these various conditions.
I keep having to remind myself that everything probably doesn't fit neatly into one disease! I like to be organised (perfectionist is probably an understatement if you ask my family đ), so it's probably just something to do with that, but yes it could be overlapping symptoms. It seems quite common to get diagnosed with more than one autoimmune/connective tissue disease at the same time.
I know what you mean regarding the photos. Sometimes I take a photo and it just looks normal, but in real life my husband is horrified by how red & swollen they are. It's worse in the evening, when there's no natural light.
Yes definitely, evening light is the worst when trying to photograph symptoms, which is frustrating, since my (and many people's) Erythromelalgia is often worse on an evening/night. I remember taking photos of my face one night when it was horrendously red, and absolute agony, but the photo doesn't show the severity at all.
I'd never heard that before, that is very interesting. My thumbs are involved with my EM (as are all my fingers/hands generally, although my facial symptoms are worst) and I have the chilblain-like lesions on my thumbs as well as my other fingers, but in terms of my white patches/possible raynaud's symptoms, I would say so far, no thumb involvement. The white patches only appear on my middle and ring finger, on the knuckles of my left hand. They often feel strange too - like... tight almost? It sort of feels solid, like someone has turned that area into concrete. But then when they go away (usually 20 minutes to a few hours later) they feel fine again. It's hard to describe. It happens more when it's cold, but not always.
I can definitely see the red spots in your photo, are they the telangiectasias that people with scleroderma often have?
Hi - no I donât think thisârule of thumbâ applies to EM. EM is thought to be the cutaneous manifestation of small fibre neuropathy / SFN meaning that it flares independently of the large blood vessels and nerves I was told. It actually sits under heading of neuro vascular although Iâm guessing Raynauds causes SNF for some of us ie damages the small nerve fibres. And SFN peripheral nerve damage in turn can trigger vasospasms ie Raynauds too I was told. So thereâs lots of overlap for people with both extremes - but in SSc, Raynauds is part of a systemic / vascular process which is why it often involves the thumbs.
Yes the spots are the CREST matted telengecstasia associated with limited SSc - although my antibody points more to the diffuse subtype. I have them on my face and chest as well.
I think the tight sensation of EM -,which I get too - is due to the oedema it causes and also because of the small nerve fibres being over stimulated. So it can mislead us into thinking that this is scleroderma skin tightening where it is actually neuropathy related ie the tiny nerve fibres are over stimulating the tiny blood vessels because they loop around each other.
Hi, sorry, I worded my reply badly - I didn't think the "rule of thumb" applied to EM, I was just rambling! đ EM is often associated with SFN, and is neurovascular like you say, although interestingly not everyone with EM has small fibre neuropathy or small fibre dysfunction. At least as far as I'm aware. So there must be a different underlying cause in these people.
I actually never get the tight sensation with EM, I'm lucky in that I don't get oedema with mine. I do get the feeling of the area being "filled with hot blood" (not sure how else to describe it) which makes sense, since there's probably a lot of vasodilation going on. But I don't get swelling or a tight feeling. The tight/solid feeling I get is only in these little white patches on my knuckles, and happens more in the cold. It also feels more in the joint or tissue than the skin. I definitely don't think I have Scleroderma, but Raynaud's seems possible. I've got an appointment with my GP in a few weeks to see if she can refer me to someone, fingers crossed she can and I can get some clarity đ¤
Iâm not sure about Raynaudâs although it is a common affliction in primary form. Thereâs a good new webinar on SRUK with a Bristol rheumatologist who specialises in Raynaudâs/ SSc. You can find it on the SRUK website. Someone asked him about Raynauds without the typical colour changes and I think he said yes this happens.
Mine is painful and/ or numb and very apparent in cold because I can feel the blood stop reaching my extremities, like Iâm in a freezer and all I can think about is getting into the warmth and turning on my electric blanket asap. I used to be a more EM person, probably due to my hypermobility but with hypothyroidism as well as Systemic Sclerosis and Sjogrenâs all taking over and dramatic unintended weightloss, itâs the Raynauds I dread these days. Best of luck getting answers. OT60 xx
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