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 and can feel like they are burning. The rest of the time my palms and fingers are pale. If I hold my hands above my head the mottling lessons.
The same sensations can happen to my feet but they don't seem to get the mottling (I don't think) and especially at night my feet and legs can feel like they are burning (bad enough to keep me awake) and are sensitive to the covers. My feet do sometimes swell up.
Not sure if the photo shows it very well.
Ive posted on different forums and so far had suggestions of Livedo Reticularis, Raynaud's, Erythromelalgia (or presentation s of both) and Venous Insufficiency /blood pooling. I don't know anything about the latter???
I did show pictures to my new Rheumatologist as part of my first assessment and will hopefully find out answers at my revision soon.
I'm just not sure if it is anything or nothing.
I also get all over constant paresthesias which is much more intensive with heat and both things get much better with submersion in cold water (swimming pool for example) but return immediately afterwards. Summertime is spent trying to keep as cool as possible generally in an air condioned room as otherwise I often feel like I am on fire and is totally unbearable. (I currently live in Southern Spain and not looking forward to another summer.)
The paresthesias has responded to corticosteroids but is beginning to return already as the days get warmer.
Thanks.
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Poppyfields65
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Hi M. Well you know I get this and that I'm none the wiser so I'll leave it to others to respond, hopefully, and watch with interest. It's not nothing though - it's a visual clue. The painful parasthesia you experience is all too familiar. I'm starting to get the idea that we all experience this stuff slightly differently because it's as unique for each of us as our fingerprints are. Xx
Yep...no picnic...been living with this for many years...as I understand it, my version is due to underlying immune dysfunction & connective tissue disorder: Ehlers Danlos hypermobility + infant onset SLE + early onset sjogrens all causing small vessel vasculitis + simultaneous raynauds & erythromelalgia and dysautonomia. My daily oral combined therapy lupus & immunology meds help somewhat to damp this down, but lots of things stimulate this cycle of sensations + visual signs & symptoms: from surrounding temperatures to whether I'm in a flare or have an infection
Hope something in there is useful
🍀🍀🍀🍀 coco
PS blood pooling/venous insifficiency can happen for various reasons...including all the causes I've mentioned. But the only times it's been suggested to me, were when less expert medical practitioners we're trying to get me to shut up & stop asking questions 😉
Thank you both. Both your opinions are invaluable as ever. I do wonder aswell if it is all just linked together. This mottling thing started I think around the time of the paresthesias which was sudden onset.
For sure: in my case this is all linked together...eg my livedo reticularis mottling is ever present, but when am flaring or have an infection, it's worse. And, the way my blood settles in my feet & hands (blood pooling/venous insufficiency) partly relates to positioning, but this visual symptom overlaps with the cyanosis (Low oxygenation) typical of my raynauds.
Hi. Yes I to have Reynaud's and my feet go blue if they are not raised which is embarrassing and a source of excitement to chiropodists etc!! I was scared I was at risk of losing my feet as I have diabetes too but apparently my pulses are ok. It is reassuring I am not alone with having these things alongside lupus. Not much fun but party of who I am now I am afraid, though not very sexy if you are single like I am!!
I have Reynaud's too and my hands usually turn red and white and I get Red on my cheeks but white around my mouth and eyes. My legs have red and white spots too and my hands and feet are the only parts of me that are cold. I am not sure if there are any other reasoning's for the red on my face but it is really embarrassing and unattractive. If there is a way to get rid of it and someone knows please tell me because it sucks having it especially when I get nervous or embarrassed because my face turns red like tinker bell.
It's just all so complicated isn't it....... Makes you just want to have a g&t on a Saturday evening doesn't it...... Except that alcohols a no no as it just makes me feel so ill even on a very small amount.... 😰😰😰😂😂😂😤
Yes that is the real bummer not being able to tolerate alcohol!! I get drunk in half glass of wine and suffer do not worth it though sometimes you just have to have a taste!
Thanks everyone. Another one with all the (definitely diagnosed) secondary Renaud's, erythromyalgia developing in the feet, and livedo reitcularis ( my legs and knees in particular look extraordinary) Hydroxy is my main med, nothing on offer for the Raynaud's because my blood pressure is low, and, well ....there you go ! Sympathies to all x
Well just to add that I'm minded to think it's small vessel related as I also have small vessel disease of the brain/ white matter and rheum tells me this is related to my Sjögren's. It's taken me a long time to make the connection though! Also to say that if you have EM tendencies you may want to avoid Viagra/ Sildenafil. After a beach walk today both my feet were entirely scarlet just as used to happen with Nifedipine!
Hi. I am interested to know if you don't mind what brain symptoms you have? I have Reynaud's, mild lupus and ? Sjorgens with a bowl AVM and have had lots of cognitive problems recently getting worse.
I don't really have any symptoms. Or rather I do have the neuro symptoms of Sjögren's which are rather like MS sometimes and small fibre neuropathy. But the main symptoms would be early altzheimers and I don't yet have any of these thankfully. You should request a brain MRI and testing at a memory clinic if you're concerned though.
Thanks. It is fear of finding out as nothing they can do and then again after 20 years working with dementia sufferers it scares me, but guess if I don't find out I will never know!! Will speak to my very patient go. Thanks.
I have the exact same thing and it's been diagnosed as livedo reticularis.
I have antiphospholipid syndrome and lupus like syndrome with small vessel disease.
I'm on warfarin and it's much less now but when my warfarin levels drop this reoccurs.
I've had mini strokes and a spinal stroke. This hand and feet mottling with a prickly feeling always occurs when something major happens to me as well such as chest pain or a TIA. However I do have it when nothing major is happening as well!
I hope that answers your question as to what it is. Have you been tested for antiphospholipid syndrome? I think it would be wise x
I don't know about Mickyaela but I was tested in 2015 and didn't have any of the APS antibodies but still get the pooling in my hands and Livedo Reticularis in feet and knees.
So i agree it is important to get APS excluded of course - but Hughes Syndrome doesn't account for mine, although I do have thicker blood because of my Sjögren's and high antibodies and systemic imflammation.
The neurologist only tested me in 2016 for the APS Anti Cardiolipin antibodies. In March this year the new rheumy tested this again plus the APS lupus Anticoagulant (waiting results for this and all other bloods she ordered) but not the 3rd test available for APS!! It's beyond me why they don't do all the available tests at the same time...
For instance for coeliac disease, since Oct 2014 I have been tested 4 times for the tTG iga antibodies but not for the other ones available -
TTG igg, EMA IgA, DgP IgA and DGP IgG. ( I've watched Alessio Fasano's YouTube conference recordings and read his book Gluten Freedom. " But I did have a gastroscopy with biopsies. All clear.
Drives me mad, so how can they rule things out properly if they don't do all the testing.
Anyway, poco a poco as they say here in Spain. Little by little!!
Really Ylek, do your palms really look like mine? I'm interested cos all the Google pictures I've seen of livedo reticularis are on different parts of the body, legs etc and it looks more purple and lace like than small red/white mottling like mine with red fingers.
Does it disappear if you hold your hands over your head??!!!!
It is exactly the same and I questioned it for a year! I do not have the standard livedo that others get on their legs etc. It is called palmar livedo reticularis. Mine feels prickly as well and nobody else has any discomfort with theirs. I honestly can't say I've put my hands over my head haha so can't answer that.
You are the only other person who has described exactly what I have and mine is diagnosed x
Well I have it too and don't have APS - like salami mottling on fingers and the other paler sort Mortadella or Speck on my palms. But mine is permanent and just shows up more if I'm hot.
Ps and it's more pronounced in area of hands where tingling is worse
Mine isn't permanent, it definitely comes on when my hands get warmer especially when I'm walking the dog I can feel them start to prickle and feel swollen, I look at them and the mottling is there. Also now the weather is warming up it comes on intermittently.
Mine isn't permanent and is prickly when it does come on. Like with any livedo it can be perfectly harmless but in some cases like mine it can indicate a systemic disease so it's always worth checking.
Yes I have a systemic disease too and it is often associated with vasculitis, Raynauds and APS so I can relate to the swelling and pricking in heat as I get it too.
What I meant by permenant is that when I look closely I can see dark pink blotches under my skin around my palms and finger pads always now. But I should say that I'm very fair with translucent skin so this may be why I notice it even when it's not hot, tingling, swollen and flaring? My 20 year old son has the same fairness and this marbling but his doesn't prickle or swell in heat as mine does. I showed my new rheum 2 weeks ago and she thought it part and parcel of the small vessel pooling relating to my connective tissue disease rather than Livedo, which I also get a lot of too. I think it's a also part of Erythromelagia as a counterpart to my Raynauds 🙄
Sometimes I feel as if my fingertips and palms will burst open with the heat and pressure!
Wow, that's really interesting!! Thanks for that! I'm glad I showed the rheumy the picture now! I showed my GP and she said it was nothing so I didn't bother showing the neurologist when I saw him the first time in March 2016 (cos I just felt stupid,) I guess I should have.
The rheumy asked me if I had any funny rashes etc so I mentioned this and it was on my symptoms diagram anyway that she kept. I asked if she wanted to see photos of it and she said yes, she looked at it very closely. I then had to strip so she could check for any other rashes etc.
Anyway, will see what the results show. Do you know what APS antibodies you were positive to?
Interesting, that's the one that wasn't done for me last year but has been done in March.
OK, well we'll see. I had another mountain of bloods done at the same time for all sorts of things, some repeats some new ones such as C3 and C4.
My ANA has been positive 3 times since 2015 at 1:320.
If I did have APS i guess it could be causing my migraines, chronic headache and 24/7 dizziness/vertigo ... Although the dizziness has disappeared with treatment of corticosteroids....
But, I feel I'm getting closer now than ever to further diagnosis for outstanding systemic symptoms.
Yeah same I just put my hands over my head cause I don't usually do that and didn't know if mine did that too and they do I get dots of white on my hand and the rest is red almost like salami.
I've been reading a few articles about Livedo Reticularis and they all say the red doesn't blanch when pressed. I think mine does but I'll test it out. Also it says its associated with cold. Mine always starts when my hands are warming up.
Various possible causes or associations especially when associated with pain and other symptoms including CTD's, APS, Autonomic Neuropathy.... On one of the links It did say it can become permanent if not treated.
Ylek. Like you for your 1st year, I'm not sure...!!!! Time will tell... But it definately seems to me that my blood suddenly stops being pumped away from my hands especially when they are dangling by my sides and getting warm like they do when walking the dog.
Yes this is exactly what I have too M - when I'm hot my finger pads and palms feel hot and tight like cooked sausages! I never know what to do with them! As I've said - because my skin is semi translucent I can see the purple and white blotches all the time but if it's hot they go red all over just like sausage meat starting to cook under the grill and feel and look like I've dipped them in a nettle bed. For me this is small vessel disease as part of my Sjögren's and it's why I'm on an immunsesuppressant. But I was told by my last neuro that Aspirin and Warfarin can help with this EM type of thing by thinning out the blood. Even if your antibodies come back negative for APS this might be worth discussing with your rheum?
Soles and feet doing and feeling similar with the Sildenafil now i.e cooking!
So do you think the Sildenafil is making things worse then overall? Are your hands cooking too aswell?
Yes, I will talk to rheumy about all this. It's "funny" actually as I now remember that in the year before my IBD diagnosis I used to take alot (daily) of an otc pain killer here called Actron Compuesto. It has paracetamol and 276mg of Aspirin in it. I used to take between 3 and 5 per day in desperation to help with chronic headache that nothing else helped and I swear it lessened the dizziness a little too. However I now can't take any aspirin or Nsaid's with IBD as they can trigger flares.
I feel I'm gradually building a picture, I hope the rheumy is too and we start to get somewhere...
Twitchytoes, does your small vessel disease have a name? It does sound so similar to mine... Or have they just named it EM. Sorry if you've told me before.... 😰 😂
No name and my main diagnosis is Sjögren's so I guess their thinking is that it's just part of my Sjögren's same as my secondary Raynauds? Maybe I'll learn more from reading her clinical letter but that won't be for another month at least - that's NHS 🙄
My main worry was getting Scleroderma excluded and I did. Ironically, my main focus now is on whether I should push to have the dysmotility investigated as I've really resigned myself to the peripheral issues being part of my connective tissue disease. I guess this is sort of the other way round for you because you haven't yet got a name for the neuro/ CTD issues. But at least having diagnosed IBD means you do have autoimmunity and things often go hand in hand - in fact increasingly it is believed by many that autoimmune diseases start in the gut.
My old pharmacist had Ucerative Colitis, some kind of lung disease and finally, RA. She had a lot of ulcerated tissue removed from her bowel and her severe sinovitis alleviated. She takes Injectable Methotrexate for her RA and it helps her UC. Maybe immunesuppression would help you in same way?
Hope fully I won't have to wait too long for my follow up. I joined a Facebook Erythromelalgia late last week and posted some hand photos. Lots of responses and very interesting discussions about Dysautonomia. Fits in with the AN theory and info about those with dizziness being successfully treated with a particular type of steroid used for Addison's disease etc, but I looked it up very briefly but it seems to work differently than pred and budesonide. But I picked up some more ideas to talk to rheumy about
Anyway, I'm out walking Charlie and whilst he's chasing rabbits I've just pressed down on the mottling that's appeared 20 mins after leaving home. It does blanch.... As I slide my finger over, the palm turns to white then back to mottled red immediately after. It's as if the blood is being moved then going back.... So if the sites I've read about Livedo reticularis are correct it may not be this as they say it doesn't blanch...
Well... The last few days the weather is warming up... Getting into highs 20's/low 30's and I'm noticing that this mottling thing is definately spreading.
It's almost clear enough to get a photo of it at times on my forearms and I'm also noticing it very very faintly on the rest of my arms and my legs.
Will see how it progresses, it's only going to get hotter now.
All over paresthesias from my neck downwards is also gradually getting worse.
I feel for you. I was always terrible in heat - I would get itchy, sore heat rashes everywhere - everything that could bite would bite or sting me and I'm terribly fair skinned.
However I seem to crave sunshine and heat now, but only if there's a gentle breeze and shade nearby. Glasgow was 17-19 today and that was my idea of perfect. If it's hot here in Scotland I'm always clad in sun hat and SPf50. To be honest I've not had a sunshine holiday for years so don't know how I would fare in the kind of heat you're coping with now. I hate Raynauds but I would still prefer very cold weather to very hot any day. X
Don’t know if this is still active it I thought I would give you what I know. I have had this since I was a child (34 now); it happens when I am active in the heat-I live in Arizona so kind of often- or when I fly; indicating blood pooling.
I also have livedo reticularis when I get cold with the classic lace patterns; so not enough blood flow.
The two might visually appear similar but they feel very different. Liv ret doesn’t hurt if you discount mind numbing cold but this issue can get to bad I can’t close my fist and it feels like needles are being stuck in my fingers. Drinking water seems to help but it isn’t linked to dehydration as I average 1 gallon of water a day.
I am currently being diagnosed so I don’t have a final answer as to what the reason is but my neurologist believes it is POTS, rheum is testing for lupus but otherwise looking at EDS Hypermobility type. Apparently 80% of EDS patients also have POTS.
In my particular circumstance I didn’t think to have the circulation issues checked out until recently because I am on the autism spectrum and with sensory disorders the brain has trouble regulating bodily signals. Cold extremities is a common symptom on the spectrum.
I will update with any additional information I receive.
I'm still getting this and it's getting worse. Now sometimes my fingers noticeably swell up whereas before they just felt like they were. ( Or maybe they were but very little.)
I do have alot of the symptoms of dysautonomia and pots but it's never been tabled by any doctor I've seen... so far... Dizziness, bladder issues, paraesthesias, severe heat intolerance, issues walking in darkness, brain fog etc.
I'm currently waiting for my follow up appointment with the rheumatologist I saw late January.
Hi! I see this post is from 2 years ago, but did you get a diagnosis? my symptoms are about the same as what you have described! My Rheumatologist is exploring connective tissue related things as that runs in my family, but autoimmune thyroid also runs in my family and my father has a type of plasma cell dyscrasia. Hope you are well and you have an answer by now!!!! Thanks.
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