"Tissue bleeds" anyone?

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. (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 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

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9 Replies

  • my goodness you certainly have a great many problems to deal with. You make me feel fortunate that I am lucky to have my issues more or less under control. I hope that someone may have some help for you.Sorry that I can't be of help.

  • thanks for your kind words. luckily i've had some help re my ? via the lupus forum & the vasculitis forum. but i am very curious whether there is anyone on this forum with tissue bleeds of the sort i'm describing

    i'm glad you're doing pretty well with your issues: that's great! keep it up & take care

  • Hi Barnclown, I have been getting these same bleeds as you and I both call them. I just got one on my wrist where my wrist meets my hand, that's a first for that area. Usually it is mostly on my fingers, and I get that sharp burning pain when they start to develop. I always take pictures of them but I never remember to show my Dr's, usually because there are so many other things to discuss, but I have an appt with the cardiologist next week and I am going to show him my latest one. I have Myopathy which is a muscle disease, and a few dozen other things going on. One good thing is they leave as quick and painless as they came. Just really unnerving when they start! Take care.

  • Gosh! I feel as if I've hit the jackpot! Thanks so much for your great reply mews! Do you really call these"tissue bleeds" too? What you describe does sound vvvvv much like my stuff. Please, if poss,let me know what your cardiologist says: you're welcome to private message me on here.

    As with so many symptoms, there are probably many causes of this sort of bleed. I guess most important is that we let our drs know if the frequency, position and size of their bleeds is changing, and, say, increasing. My impression is that a history of other bleeding related probs (which I have: piles for no good reason I my early 30s needing a full on haemorrhoidectomy, angina bullosa haemorrhagica for decades in my mouth, varicoe veins, so-called blood pooling hands & feet for 7+ years, and in those past 7 years I've slo developed erythromelalgia simultaneous with the raynauds I've been managing lifelong) and a history including hypermobility, arachnodactyly, sicca symptoms, family heart disease. But also, i'm told, prescription meds, like prednisolone, can predispose us to bleeds....and although I've been rubbing topical steroids, including very powerful types, into my body in various places for years, it's only this year I've been taking oral steroids....and only in very low doses in two 4 week tapers.

    Sorry for going on & on, but just putting this into ords helps me feel more prepared for presenting to rheumatology in October.

    Thanks again & take care

  • I make sure I have pictures of them, so I have a bunch on my cell phone so it's easy to pull them up for the Dr. I also have raynauds, I think that's where they come from. Mine have calmed down some what now, I've only had them for the past 4 to 5 yrs or so. I'm 56 now and I don't like to go into all the things wrong with me the list is too long, the meds are too long, and there are way too many Dr's. I'm glad that most of them are at Johns Hopkins because with the memory issues I might wind up in the wrong state. I will let you know what he says right after I see him, I have it written down in my notes. Stay well.

  • Hello again

    I had my rheumatology appt last week. Showed the rheumy my bleed pics. She thinks there is a name for this and will check it out & include info in her letter to my gp cc me....so, I 'll try to remember to get back to you on this

    Have you found out any more yourself?

    Feel welcome to private message on here with me, if you want to

    Take care

  • Thanks mews! So you're in USA? I grew up in Philadelphia - been living in uk since late 1970s. I'm 60 this Tuesday!

    Yes, I take bleeds pics too and actually print them and give prints to my consultants at clinic visits...they say nothing...for exactly the reasons you mention: too many more urgent symptoms to discuss. I also have these pics with me on my ipad.

    Whatever, 2 years since SLE treatment started, I think now the bleeds thing is at the top of the matters to discuss list.

    So, am hoping to hear how you get on in your appt, and I'll hope to let you know how I get on in my appt oct 21

    Meanwhile, take care

  • Hello!

    I'm sorry I'm seeing this just now, I do hope all went well for you at your appointment. I have the same exact tissue bleeds as you described. For years I tried to explain them to various doctors and always received the same puzzled look. Finally I started taking pictures to be able to show them. I've had them off and on for years, as have my mother and younger sister. I, too, wonder if it could be happening in unseen locations. One of my uncles had a stroke at only age 60. He fully recovered, but fits absolutely no profile for someone who would have a stroke. So, I wonder.

    Be well,


  • Thanks so much kristina!

    And good timing! Because last week I had my big rheumatology appt and discussed these bleeds (along with a lot of other issues). Yes, I too take photos of my bleeds & give them to my rheumy. This time I took pics of recent bleeds in feet & hands. The registrar I saw this time in clinic took the bleeds v seriously and said she had heard of a named condition that covers these sort of bleeds, but she needed to look back in her papers to find the name. She said she'd give me the name in her letter to my gp cc me! So, I'm waiting....on the edge of my seat!

    Keep in touch - if I don't remember to get back to you, please feel welcome to private message me on here.

    And thanks again: you're one of the v few who replied saying my bleeds are really vvvvv similar to theirs. And I'd posted this ? On 3 HU forums (here + the vasculitis forum + the lupus forum). So, I guess these bleeds are kind of unusual.

    Take care

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