Has anyone had this diagnosed?
My primary is systemic lupus...but I went without daily prescription lupus meds until 4 years ago because my infant onset lupus diagnosis got lost. I'm 62 now.
My Drs, consultants & podiatrist have been muttering about "blood pooling" due to the purple my forefeet & toes go when I sit &/or stand. They've been observing this for years now. Above, the forefeet are a sort of grey-blue, and, looking at the soles of my feet & the bulk of my toes this colouring is a deeper purple. These really quite horrid colours usually fade away when I get moving around. My hands & fingers have a less vivid version of this too.
I have only a little edema/swelling with my version of this, but my constant peripheral neuropathy numbness increases by several degrees with the purple-ishness. I've had numb forefeet & toes for so many decades that I've settled in to taking all this in my stride (no pun intended)...but am prepping for my next rheumatology clinic and thought I'd check in with you all...to see who is managing something like this...and what they think it's down to
Of course, my raynauds cycle plays into the purple colouring caused by this blood pooling too...I have a 24/7 cycle of erythromelalgia burning simultaneous with my raynauds chilling, but the purple/blue of the so-called blood pooling/venous insufficiency happens at all points of this EM/RP daily cycle, regardless of surrounding temperature. I'm being "watched" for vasculitis at the tip top lupus & vasculitis rheumatology clinic I attend regularly...am especially prone to vasculitis rashes on the skin covering the more bone-y parts of my legs & feet. My blood pressure tends to be at the very low end of normal range (falling enough to upset the nurses during recoveries after sedation or general anaesthetic...of course, they have me wearing those stockings)
Sorry for such a long post...basically I'm particularly interested in differentiating between the elements involved in this complex of symptoms as I know it:
Blood pooling/venous insufficiency
Relatively low blood pressure
Paroxysmal haematomas (mostly in the extremities, related to my Ehlers Danlos hypermobility)
My impression is that this is all part of the classic progression of connective tissue disorders...but so far I haven't encountered other patients who have gotten into analysing these component conditions...I.e. Compared & contrasted which issue is behaving how. Probably a bit OCD of me to feel the need to differentiate between these components...but analysing my stuff this way has helped me better understand & communicate more effectively about my other chronic multisystem issues....and now I'm hoping this sort of analysis will help me discuss this more clearly & concisely with rheumatology in sept.
I'm not consciously worried about any of this...am managing it reasonably well, so it's taken me years for this to get to the top of my list for discussing with rheumatology. But I know this is an important subject I should understand better