Discoloring on fingers from cold, question

[JennaShi]

Ok so I have tried looking this up and am not sure I understand the difference between Cyanosis and Raynauds; can someone explain this to me?

I have always had cold hands as long as I can remember and the burning pain when they warm up hurt terribly as kid. Lately my hands either hurt, or tingle, or are uncomfortable and change colors. Usually a blue tinge on finger tips and or white (or more pale) on under- side and outer side with blue tinge in nail bed and have only caught my lips turn a blue tinge once.

Toes often get cold and two middle toes usually go numb, even when walking, but have never wanted to take off my double sock layer to look🥶. I have heard this is common with alot of auto- immune diseases, and haven’t seen a primary since the last time they blew me off.

I will attach a picture. Any advice would be great,

Thanks!

[whisperit]

It's not just you, JennaShi. When I first had symptoms of autoimmunity, one of the most striking was alarmingly blue hands. Combined with shortness of breath, they led my GP to refer me to cardiology with possible heart failure. Even after an echocardiogram, the consultant cardiologist confirmed the diagnosis and started me on cardiac drugs. It was only after a cardiac MRI that they realised the error and that the blue hands were down to an acute (and fairly extreme) presentation of Raynaud's.

It's not usually this difficult though. In cyanosis, the blue colour is due to there being less well oxygenated blood in the extremities and has no direct relationship to cold. In other situations, if you haven't any respiratory distress, white or blue hands are nearly always due to your blood vessels constricting due to cold (they tend to go white first, as the essels constrict, then blue, when the little blood they have in them has its oxygen depleted). In normal people, that happens - erm - when it's cold. In people with Raynaud's, the response is exaggerated due to an autoimmune reaction, and often happens at ordinary room temperature. Your pic and brief history looks very much like Raynaud's.

If it doesn't cause you any pain, it may be best not to use any drugs - but do take extra care to keep your hands and feet warm. Since being treated with steroids and HCQ, my Raynaud's is much less severe - but people still remark on how cold my hands look. x

[JennaShi in reply to whisperit]

Hi Whisperit, thank you for your reply. Gosh, that sounds like it would have been a scary experience. I could see why you were referred to cardiology, but I am unsure I understand how they diagnosed you through and echocardiogram and then changed their minds after a cardiac MRI. I will look up both and see if I can understand better. Regardless, I am glad to hear that they came to figure out what was going on with your hands! Have you figured out what is causing your shortness of breath?

Thank you for taking the time to explain these things to me. IfI understand you correctly, you are saying Cyanosis isn’t related to cold, but more due to less oxygen getting into the hands and fingers.

Raynauds happens when the blood vessels constrict, this happens in cold whether and not, leading to the color changes and can be painful too. When you mentioned about people who do not have Raynauds, could you explain what you are referring too? I apologize, I’m not sure ai understood. Where you saying that all of these symptoms can happen to normal people too, or rather people without Raynauds?

[whisperit in reply to JennaShi]

Sorry I wasn't entirely clear. People without Raynaud's do get white (and blue!) fingers when they get very cold, as it's a normal physiological response to constrict the peripheral blood vessels and prevent excessive cooling. The difference with R's is that this response is triggered much more easily, and can happen even at normal room temp.

Cyanosis appears whenever the blood in the periphery is depleted of oxygen, regardless of Raynauds or not. but again, in people with R, this tends to happen more readily because we get less blood to the periphery as a result of R causing vasoconstriction more readily. Hope that makes sense.

My shortness of breath was due to interstitial lung disease, caused by an autoimmune response that resulted in inflammation of my lung tissue. It resolved quickly once I was put on the anti-inflammatory meds (steroids). The echo was misleading in my case because my heart is unusually placed in the chest cavity and on echo, it appears like my L ventricle is enlarged. On MRI, they got better visualisation and realised this. They could also spot the lung inflammation - so - no cardiac failure, but ILD and autoimmunity instead. Hope things improve for you soon x

[JennaShi in reply to whisperit]

Thank you so much for clarifying, I really appreciate it and think that there is alot of mis-information out there about the difference between people with and without Raynauds and am questioning whether my symptoms are just normal. After reading your message, I went back and read my post and realized I didn’t clarify some things either such as: the discoloring happens when I cold, this happens alot, as I have Thyroid issues, so even 70 degrees F can be cold. So it may be just a normal thing as I am not sure that I have caught the discoloring outside of being cold.

Wow, it’s amazing what technology we have today! I am so glad that they chose to do an MRI afterwards and were able to see your heart placement and spotted your lung inflammation and give you proper diagnosis. That is wonderful news that the anti-inflammatory drugs helped tremendously and resolved quickly. Thank you for sharing with me, it sounds like you have learned so much about yourself and your health and things are improving.

[Hidden]

Hi there. Whisperit’s explanation has also made me better informed. But to add to this there is also a difference between primary Raynaud’s and secondary. Only 10% of primary Raynaud’s will become autoimmune whereas secondary is usually associated with autoimmune disease. Primary Raynaud’s usually starts when people are young and can continue to affect people or sometimes they grow out of it I believe.

Secondary Raynaud’s usually comes on suddenly at an older stage and would normally be a flag to rheumatologists that something autoimmune is occurring because people don’t just suddenly start having vasospasms in their 30s or 40s. This is what happened to me but I had to show the vascular doctor photos of my hands and feet very discoloured to get him to acknowledge this. And even then he said that primary Raynaud’s is very common and I had to point out that mine only arrived suddenly out of the blue one day when I was already post menopausal and newly (mis)diagnosed with RA. I have Sjögren’s as my main autoimmune disease but also have long standing hypothyroidism which can make temperatures abnormally low. I used to always burn and boil before the main onset of a rheumatic disease in my mid 40s.