Vasculitis UK
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Info please: wondering about my "tissue bleeds"

I guess there are other names for these haemorrhages deep under the skin. Mine aren't like what's called "blood blisters" cause mine are deeper in my soft tissues.

I get these mainly in my hands & feet. Maybe 1 every 3 weeks or so, but lately more like 1 per week. They come on without any "friction or contact", meaning, they happen any old time, even when I'm not actually doing something with my hands or feet. I get these bleeds mainly where my fingers & toes join up with my hands & feet, as well is anywhere in my fingers & toes themselves. So these bleeds affect my extremities, which seem to be showing the greatest progressive damage due to a lifetime of untreated (un recognised) SLE + secondary lifelong raynauds simultaneous with erythromelalgia, sicca symptoms/sjogrens and angina bullosa haemorrhagica amongst other diagnosed conditions. BUT so far the rheumatology & vasculitis clinic I attend has only said I probably don't have vasculitis "yet". (i'm 60 next week. My lupus was diagnosed when I was an infant & teen, but the diagnosis got lost. I was rediagnosed 2+ years ago by the NHS and am now in treatment)

Like I said above, these bleeds can happen any old time, really, regardless of surrounding temperatures etc. First I feel an agonising 10/10 burning hot spreading pain where the bleed has started, and my skin turns bright pink/red and starts feeling inflamed and feels really sore. Within a matter of minutes, the middle area of the red goes dark purple blue deep inside the tissue like a deep bruise. Gradually the burning and soreness settles down a bit and the bleed area just feels 8/10 painful and stiff.

This purple colouring & stiffness lingers for a few days

I've been having these bleeds for decades, but they have been increasing in frequency over the past 3 years. My feeling is: if these bleeds happen regularly in extremities like my hands & feet, isn't it likely these bleeds happen in my head too but I just can't see them or something?

I'm on daily 40mg plaquenil + nightly 20mg Amitriptyline + 3x 4week 10mg pred tapers per year + various topical steroids on maintenance regimes including high strength dermovate. Am having a series of steroid injections in my feet for mortons neuromas + bursitis. I've been doing antiinflammation diet & supplements for 10+ years now. I see my rheumatologist in late October when I'll ask about these bleeds, but I'd like to get them in perspective first.

Thanks in advance for any info/help

1 Reply

Sounds complicated. If in doubt, seek a second opinion! The line between SLE & Vasculitis is very indistinct & can change. Please send me a private message telling me where you live then I can suggest the best place to go.



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