Here's a photo of my fingers about a minute after I put it on the floor. It took that long for the color to come back. Anyone experience this????
Color of my fingers😩: Here's a photo of my fingers... - LUPUS UK
Color of my fingers😩
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LucyK5821
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I forgot to say I was carrying a bag. I understand it can take a couple of seconds, but honestly took almost a minute. Yikes!
Hi, it's the tips of my fingers that go white like yours and numb. Horrible isn't it xx
Putting pressure on my fingers and waiting for them to return to normal was how my rheumatologist diagnosed Raynauds.
Thank you Puska! Were you diagnosed with Lupus first then Raynauds or vice versa. Seems like lately everything is starting a snowball effect. Ugh!
It looks like Ranauds syndrome to me. Good luck.
Mine are like this too all the time
Mine are like that also open my hand out wide stretching out looks like something from a horror film all bloodshot lines with yellowy/white rest of it!
I think it is Raynaud, Mine started in 2012, I had some lumps in my fingers and they became painful and changed color. my gp gave me some steroidal cream but I didn't work. My consultant did a biopsy and gradually my fingers began to break with ulcers and that's when I started have all the infusions eg rhitoxmab, plasma exchange, iloprost (which nearly killed me). None made any difference until this year my rheaumy suggested flolan. I have had to go into hospital twice this year in a space of 2months for the infusions . The first time I had the infusion for 12days and the second time I spent 6days.
My fingers have never looked this good since 2012. I also wrap up warm in every weather. always have gloves on even in summer, I wear them in the house and I can't go to bed without them. The warmer they are the better.
Check in with your Dr's so they do some tests and please keep those fingers warm. get gloves even when in doors. the warmer they are the less painful they get.
I wish u all the best. keep us updated on how things work out. take care and God bless
Regards
Ije
Yes: my hands etc are affected by raynauds and behave similarly.
My raynauds started in childhood with purple lips & tinge to my skin when cold. Eventually purple other bits too eg n*****s. Weeping chilblains & numbness in feet & hands by my 20s. Pulp lesion ulcers by my 40s. In my 50s visible symptoms in hands & feet had become so severe that finally I was referred to rheumatology & my infant onset lupus diagnosis was recovered. My raynauds affects me all year round, whatever the weather
Be cautious regarding treatment...I agree with ijeasike...a rheumatologist tried me on a standard raynauds treatment, the vasodilator nifedipine....which doesn't suit my vascular type of lupus at all! I immediately turned bright red all over my bod, with all my lupus symptoms flaring badly, and my erythromelalgia (a burning hands, feet, face condition, in my case simultaneous with raynauds) became so severely exacerbated, that it's never returned to previous intensity.
Raynauds can be an important secondary in many autoimmune conditions....eg my husband has early onset crohns with raynauds...and there is a great HealthUnlocked community forum here for Scleroderma & Raynauds (the SRUK)....anyone with raynauds is welcome in this forum (even without Scleroderma). The SRUK produces a brill seasonal magazine for members: lots of good articles & advice for raynauds sufferers!
Take care 🍀🍀🍀🍀 coco
in reply to Barnclown
Hi i was on nifedipine had to come off it was the world was spinning around and round was like being at sea in a "12" i dont have high bp normally 90/60 think it just plummeted quicker than shares in chocolate fireguards!
but SRUK didnt think much to it either when spoke to them as it don't work for all plus has many side effects one of those breast growth in males! for one.
Barnclown in reply to
This is it! Although I only took 4 days of nifedipine, am still feeling the side effects. The rheumatologist who prescribed it hardly knew my case at all, but diagnosed raynauds simultaneous with erythromelalgia, yet didn't warn me to stop if I reacted the way I did. I might've stopped nifedipine faster had he warned me. I'll never forget his lack of caution & consideration (there are loads of excuses I can & do make for him. Drs are only human. Basically, I feel my job is to make up for their foibles 😏 by being as informed as poss myself)
YIKES: how awful it does this to men!
in reply to Barnclown
Just come back from Quacks want a laugh? one of the first words out of her mouth was you don't have Raynauds! i said i do as she was moaning about things trying to infer things it's in my notes she said not i said other quack begrudgingly confirmed it few years back!
I said i have a copy of it!
Barnclown in reply to
Was this raynauds skeptic today a GP?
Was the raynauds diagnosis by a consultant of some kind?
Usually a consultant trumps a GP...
in reply to Barnclown
No it was another GP first time went she said no next time asked me what happened said turn white/blue then get painful the go red she said yes thats Raynauds
but you couldn't make it up with them!
They try to turn everything on you
Barnclown in reply to
GRRRR...
we aim to be well enough informed to stand our ground with flip flopping medics,...yet being open minded is equally crucial to gaining the sort of convincing accurate diagnosis that can result in more effective treatments and increased quality of life
CATCH 22
in reply to Barnclown
She was trying to make me out as a fruit cake!
I know what i know as many that speak to me say im very well versed in matters as having asperger's like to find things out and want the fine details so rarely ever leave anything to chance.
But it leaves a bad taste in my mouth whenever ive been to quacks like a fight to get anything
Barnclown in reply to
😏👍👍👍👍
in reply to Barnclown
The other thing i get also not sure but think a Raynauds issues as was asked by Neurology when was asked about my things few years back is that my food often seems to sit on my chest like it's not digesting so often feels like eaten even though next day or repeats even so often feel blown out
Barnclown in reply to
This sounds like gastroparesis... your motility is compromised. I've been managing this for many many years. My understanding is that in my case this is mainly down to my vascular type ehlers danlos hypermobility, but there can be other causes in other people. On the other hand, raynauds tends to lead to peripheral neuropathies, and I think gastroparesis involves neurological issues. Gastroparesis is fairly common with vascular ehlers danlos
in reply to Barnclown
Yes - I too get this all the time at both ends but especially oesophogus. Don't know if I have EDS or not as never been asked or tested but I tried the criteria on myself and certainly have always been double jointed in hands and wrists although hardened tendons have made the flexibility less now. When I've asked about this on a Sjogren's forum some person in their 70s tells me it's just ageing badly and accept it but I'm 53 and I feel it's a very unpleasant symptom to accept?!
Barnclown in reply to
😆 both ends is right, YAY twitchy 😆
that 70-something Sjogrens person is of course welcome to her own views...but my version of both dysmotility & tendon tightening started in childhood about the same time my gum recession began...I was under 10...no further comment necessary, eh 😉.
🍀😘🍀😘
in reply to Barnclown
Such a relief to share my potentially ageist thoughts with you BC - my proxy older sister who, like me, was born into autoimmunity rather than going from rude health into an age related decline! X
in reply to Barnclown
Ps consuming vast amounts of filtered water with food seems to help me - but not close to bedtime and water at room temperature rather than icy! X
This happens to me, too, especially when carrying bags, but also to my toes in the shower. I think it is bad circulation! Yes, I am sure it is Raynaud's though diagnosis does not seem to help me much.
in reply to Cann
No but like all these things it builds a bigger picture for an overall diagnosis so best get it formally acknowledged by showing photos to the GP or rheumatologist.
Happens all the time. Worse with bags. Unless it's severe, they don't treat it.
Mine used to go blue a lot. I had a severe attack of reynaudes and it was about 18 months before they were back to near normal. So painful as well. I went out today wearing gloves but for some reason they got cold really quickly and really hurt.
Hi there,
Have you asked your GP to refer you to a rheumatologist? They will be able to look at your symptoms and diagnose you.
In the meantime you can find more information about lupus symptoms and diagnosis here lupusuk.org.uk/wp-content/u... as well as more information on about Raynaud’s phenomenon here lupusuk.org.uk/coping-with-...
.
Strangely enough I posted of similar with my toes this morning on Scleroderma & Raynauds HU but had only one very cryptic reply -should have posted here instead!
I have primary Sjogren's and Hypothyroidism and often have exactly this white band on my fingers and toes if I've carried things or clenched my hands together - takes a good minute for colour to recover as you say. Like Barnclown I was told I had Raynauds and put on Nifedipine, which made my BP plummet occasionally and things kept swelling randomly and flushing crimson, face included.
I did ask my new rheum to add Raynauds to the list because I think the whitening has to be this but because it's not often affecting the tips of fingers (they go bright red)I've wondered if I'm right. The bright white tips of fingers and toes happens more when I'm on any anti rheumatic meds such as Methotrexate or, now just started Mycophenolate. I'm guessing the drugs make me stressed and this exacerbates things causing vasodilation?
Very helpful to read this post anyhow!
Hi. As people have said - a broad look into this would be proper.
I've had Raynaulds secondary to SLE Lupus since near forever. Effects my toes only. Seems to go along with temperature changes with me - the colder - the worser.
Today's been pretty warm, but the evening is a bit cool now (Australia). My feet went from happily Lilly white - to slightly red tipped by late after-noon. Now every toe except the big ones are dark reddish blending to blue/black on the tips. Looks like they're going to drop off really. It never hurts (perhaps a bit numbing) but has never done me any harm. Had it since my early 30's - now 48. Perhaps keeping your feet and toes flexibly exercised is good ?
Tend to wear very thick socks - even in mild cool temperatures.
X
😆 that "going to drop off" look is quite something...my version is black-purple tinged with olive green: my husband tells me "put those feet away"😆
Agreed!!!!! we do well to keep our feet as active & flexible as poss. Eg Mine are so numb with peripheral neuropathy, and so far away (am quite tall) that I just make sure to see a podiatry nurse once a month...I rely on her to make sure nothing sinister is developing (ingrown toe nails etc)...meanwhile I massage them with Shea butter morning & evening + file off hard skin once a week. And my daily 40 minutes of leg/feet tendon stretching rehab hurts like h**l but afterwards my feet & toes are happy as larks!
Best to get into a feet routine & keep at it...7 years unable to stand/walk on my lame feet for more than a few stolen minutes taught me to devote a lot more care & attention on them 👣👣👣👣
There is some consolation in discovering we're in good company...caring for our colourful feet & toes 😆
: )
I must admit. At this point of time there is a lovely olive hue! With just a touch of supple opaque flake white .......(oil paint term - not literal) Gives them a lovely flat corpse like non sheen. I do believe the olive is emphasized via the light refractive nature of the toenails.
To Lucy - don't listen to us. We are........old. No offence Barnclown.
Its a harmless condition as long as you keep things circulating.
I was on amlodopine (a BP medication) for a while - that actually reduced the problem a great deal. Now I take another BP med and the aesthetically interesting feet are back.
I haven't had a Doctor worry about it yet.
Its not a biggie.
Exactly: flat corpse like non sheen....OH YESSSSS 💃💃💃💃....
And 😉 Lucy: freckle is right: don't mind our joshing...at 63 I'm even older than freckle...have had all this stuff going on with my feet & hands all my life, yet these are still doing the job for which they were designed...it's great you're here, cause the sharing on this wonderful forum definitely can help you discuss this stuff with your medics so that together you can help your hands 👏 & feet 👣 to many decades of good service
🍀😘🍀😘🍀😘
Yes I have twice yearly visits to hospital for 5 days each time where I have infusions of Iloprost . On the drip for 6 hours a day for 5 days but it does help. My fingers were starting to go black in the winter with the cold and peeling and very tender
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