Raynaud's Concern: Hi all. I was dx... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raynaud's Concern

Birdnparadise profile image
6 Replies

Hi all. I was dx with Primary Raynauds a few years back by my PCP. She did no further testing due to having no other symptoms. She advised me to take aspirin daily and keep my extremities warm. I'm working on quitting smoking (vasoconstrictor) as well as cutting caffeine out of my diet. Lately though I've noticed my knee caps turning a purplish red color along with numbness (numbness only on the left side intermittent) and the blood vessels below my knee caps spider out with a flushed red tone. I have no health insurance at the moment and it will be difficult finding a diagnostic center willing to work with me. I'm just curious if anyone has had these issues with their primary Raynaud's or even symptomatic with Secondary. Input would be great. Thank you!

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Birdnparadise
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6 Replies
zenabb profile image
zenabb

Yes, but I have scleroderma as well. You may need to see the doctor when or if the symptoms change.

Lupiknits profile image
Lupiknits

Yes, this looks very much like mine, which is Secondary to something else currently called a connective tissue disorder.

dianekjs profile image
dianekjs

Do you have a positive ANA, and if so have you had any individual antibody testing done? Any other symptoms such as GERD, skin changes, swollen fingers, joint pain, etc.?

cobr1 profile image
cobr1

I have the same at my ankles, my GP said nothing will be done until there is no pulse in my feet and to live with pain and numbness

Serendipity16 profile image
Serendipity16

The colour and numbness can be normal for primary raynauds as part of an 'attack' but if you are having this for days rather than minutes/ hour or two maximum, I'd get it checked. Usually triggered by stress or temperature change (hot to cold to give the colours you are seeing). You can also get really red and sore if you go from cold to hot. I don't smoke and have limited caffeine but don't take medication to manage primary. Nifedipine (vasodilator) gave me headaches so I manage with clothing layers. Hope this helps and sorry if I'm repeating something you know. Good luck.

X-Woman profile image
X-Woman

It's hoe my EM first began to rare it's ugly head on me. My knees were always a mauve colour (dark purple/grey) they are still like that some 14 years later but that's when I'm not flaring with EM. When a flare is starting in my knees it looks like a neon orangey red spot that gradually grows inside the mauve colour.

I must say though, it too something like 5 years after before the real burning came. Before that it was what I'd call cosmetic. People often commented in my mad coloured knees but it was of no concern to me simply because it never hurt.

About 3 years ago my feet (toes and front part of the sole) got the mauve colouring goung on.

Long before this happening the EM was present.

It's not connected to Raynaud's because you don't get Raynaud's in the knees

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