Is it Raynaud's or something else?

Posted by letapumamatt @letapumamatt, Jan 30, 2025

Hi all,

So, since last April I have a multitude of odd symptoms ranging from neuropathy (around head/top of feet), extremely loud tinnitus (left ear only), some dizziness/double vision, and most prominently, erythema (flushing) of the hands (usually) or ears (occasionally).

So, the flushing definitely occurs with a rise in temperature, but it only takes a small increase. Much of the time at room temperature, I've got one of two situations: very pale fingers with loose skin, or pale fingers except for pruney, reddened fingertips and tight skin. When the flushing occurs, it covers the entire front of my hands, and just the fingers up to the knuckles on the back of both hands.

It's definitely circulation related, also. If I run my hands under very warm water for 10-15 seconds, they will turn red- but then if I raise them up above neck level, they go back to a normal color after about 2-3 seconds. If I drop them back down to my side, they go red again.

So far, I've seen my PCP, a neurologist, an endocrinologist, and an otolaryngologist. Nobody has even offered a hint as to what's going on. I've tested negative for antibodies/proteins associated with scleroderma, MS, lupus, and RA. All my other bloodwork is normal so far. Having an ultrasound (for peripheral artery disease) next week and an EMG in March.

The only condition I can find that's even remotely similar is Raynaud's, but this seems quite different. Just curious if anyone has heard/seen anything like this, or has any ideas. Will attach pictures if it will help. Thank you!

Matt

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raebaby | @raebaby | Feb 23 5:31pm

check ito erthromelalgia and chilblaines.

harryboy7 | @harryboy7 | Feb 24 9:22am

I really recommend seeing a doctor.

slkanowitz | @slkanowitz | Feb 25 5:12am

The changes in hands and fingers described sound like those the occur with Mixed Connective Tissue Disease (MCTD). It’s autoimmune and similar to lupus, often tested with the antibody RNP in serum ( blood test). The specialist is a rheumatologist. The vascular changes are caused by vasodilation and vasoconstriction. With heat, there’s swelling of hands and fingers making them feel tight and showing the color changes. It’s different than Raynauds. I would look at your blood test results for RNP antibodies or anti- RNP with your blood test results for lupus and rheumatoid arthritis. If not done, you can ask your PCP to do it or get referred to a rheumatologist and ask. The latter could take a long time as rheumatologists often are scheduling several months out. MCTD is treated similar to lupus.

rpr13 | @rpr13 | Feb 25 8:54am

Matt: I have similar symptoms that also remain undiagnosed after extensive testing. My geneticist/neurologist said the “flushing” of hands is suggestive of, if not diagnostic for, dysautonomia.

There are countless conditions that can cause dysautonomia but if you use that terminology in your research it may help to point you in the right direction.

The MCTD suggestion above is worth looking into.

Best of luck in figuring out what’s going on.