I have not been diagnosed with Raynaud’s or anything but I didn’t know where else to post this.
I have always had this phenomenon where my hands instantly go mottled or patchy (see image) when they are resting pointed downwards or by my side. If I lift them up it mostly goes away. My fingers also go quite red, particularly ends of fingers which sometimes go dark red or even slightly purple. This is something I have always had and I was wondering if it is normal? I should mention that there is never any pain or numbness in my hands but it can sometimes feel like there is pressure in my fingers when I hold hands down.
Thanks in advance for your help!
Edit: I don’t know if you can tell from the picture but it isn’t a rash on top of the skin, it is below the surface. My skin is smooth and not bumpy.
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Hi, have same as yourself on red mottling on hands...also with changes in colour on fingertips...sometimes the whole of my fingers. I was diagnosed with Secondary Raynauds...as a side effect to Systemic Sclerosis. So, would think you need to get checked out on this. x
Hi, thanks a lot for your reply! That is interesting that I could have secondary Raynaud’s. I have made an appointment for something else anyway so I will ask him about this as well. Thanks again
I have secondary raynauds and it doesn't look like this, mine goes completely white and then black and purple. Mottled palms however can be an indicator of liver issues.
I see, thanks for your insight. It is interesting that you say it can be a sign of liver problems because I have been noticing the edges of my eyes are slightly yellow which I think is a possible sign of a liver problem. Reminds me of a few years back when people in my class were all saying my eyes look yellow. That’s another thing to bring up at my appointment. Thank you for the help!
I have the same as yours. Are you diagnosed yet? What was the result? Thanks
I have this mottling too. But then so does my 23 year old son who is in rude health so far. He and I share same very fair, translucent skin type.
I have Overlap CTD - Sjögren’s, Hypothyroid, Scleroderma with Raynaud’s, Erythromelagia and small fibre neuropathy. I was told by my rheumatologist that my mottling is Telengecstasia associated with my Scleroderma. Not liver disease in my case - think the redness associated with liver disease is more on the surface of the skin.
Yes terrible pain in palms of my hands most early mornings just now. I do have EM and Raynaud’s with small fibre neuropathy so it’s not clear to me which is causing this pain - but I suspect all three combined. I think there’s still an awful lot we don’t know about the autonomic and peripheral nervous systems, vascularity and pain. I am due my 3 monthly Iloprost infusions in 10 days time and this normally helps with this awful pain a lot. So we now assume that this pain and inflammation is more circulatory than neurological - as was previously assumed.
Wow! Primary EM (SCN9A); now Raynaud's, 7 of 9 markers for scleroderma, 7 of 9 markers for sjogren's syndrome per Johns Hopkins. Neurological and autoimmune hell, best doctors in the world, absolutely refractory to treatment. (These are the worst words in the English language!) If you are willing, please tell me about Iloprost infusions.. I am look perfectly, ruddy healthy, but am conferring with lawyers for end of life planning! Thank you, Hal in Memphis, Tn.
This was a year ago. Sadly Iloprost infusions only helps to a small extent now although perhaps would be worse if I wasn’t getting it. I believe lidocaine infusions are more effective for short term pain management for Erythromelagia but I can’t access these or tolerate any pain medications so am no better off than you. I’m not talking end of life care myself as thankfully I’ve a lot to love for ie family. Chronic pain is just many of us forced to accept one way or another. In my case it makes me angry and tired and most people who live with constant pain end up being forced down the mental health route here in U.K. anyway. Sorry not to be able fo offer more advice
Thanks for sharing. Interestingly, I know exactly what you mean these "unseen" illnesses being treated as mental illness. One related family member who suffered severe chronic pain was given shock therapy. I got the whole exome genetic test and the test showed the SCN9A gene mutation. A definitive diagnosis changed the way the medical community saw me. I went from being a head case to being an interesting case! The challenge then became to find doctors familiar with neurological and autoimmune illnesses. Except at the biggest medical centers, they are few and far between. I will let you know if visit to Hopkins pain clinic gives any new insights into treatment. Also, I did get some relief from EM from carbapazine for a while. It quit helping much after a year. It is absolutely amazing that we have almost identical conditions. Because of your post, I will get checked for hypothyroidism. And tell other family members in my proband. You have helped our day! Hal
Have you considered EDS? Ehlers-Danlos Syndrome? I have recently been diagnosed with EDS, I am currently having more tests to determine which subtype(s?) as i have overlapping symptoms. Things like this.. i thought were just normal/ because i'm thin/ always cold... are turning out to be things like "anxiety, eds, adhd" etc ... it's been a wild year.. and I'm in my 30s.
No I did bring it up at an appointment once to no avail. It can be a number of things like hormone, liver or neurological problems, but I think the above reply is correct in that it is usually a sign of circulation problems. With me, I usually get it when my heart rate increases e.g. exercise or even just walking, or a temperature rise or drop.
My dr wasn’t concerned. It does seem like bier spots. It makes my hands so uncomfortable though I wish I could figure something more out about it or it could be treated. Thanks for help.
My camera quality is bad, but im the same way since childhood and i dont know why... do you also have trouble breathing? Not asthma but pain? My hands seem to get like this when my chest hurts... but idk whats up.
I know this is an old post but I have almost the same issue for quite a few years now. Is yours worse in warm weather? I also have postural hypotension which I have had from a teenager and it seems the two sometimes go together. Did you ever get to the bottom of it?
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