Anyone: have you been diagnosed with Achenbach syndrome (paroxysmal haematoma of fingers (& toes)) ?

I'm looking for anyone who has what I called "tissue bleeds" in their fingers & toes. Basically, they don't start due to injury or friction necessarily. At first there is redness, swelling and burning pain, then the deep bleed is red & blue, leaving a deep area of purple, which fades over 3-4 days. The symptoms can cover a small area of tissue, say 1cm square, or a larger area. These bleeds happen several times a month, and seem more frequent when I start dropping my pred dose during a taper (I am 60 and diagnosed with lifelong SLE (although my infant & teen diagnosis was 'lost' until 2 1/2 yrs ago), Sicca syndrome/ sjogrens, angina bullosa haemorrhagica, simultaneous Raynauds & Eythromelalgia, global hypermobility etc etc).

At my regular rheumatology clinic in late oct the registrar said she thinks these bleeds are either Achenbach (paroxysmal haematoma of fingers (&toes)) or Ehlers Danlos. She says the SLE treatment plan I'm on (plaquenil since 2010 at my re diagnosis, Amitriptyline, pred tapers & about to start mycophenolate) is appropriate, and no extra treatment for my bleeds is necessary because there is nothing serious underlying these bleeds. Phew! This is a relief: there is a concern that I could be developing vasculitis.

So, i'm left wondering: does anyone else here have these sort of tissue bleeds? Ok, so ehlers danos hasn't been specifically diagnosed in my case, but global hypermobility has. Perhaps the other condition my rheumy used to cover these bleeds will ring a bell: has anyone here been diagnosed with Achenbach Syndrome ((paroxysmal haematomas of fingers (& toes))?

If the reply is yes to these ?s, how frequent are your bleeds & how do you manage them? And are you on similar treatment plans to me?

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  • Hi Barnclown, I think it is now widely considered that hypermobility syndrome is Ehlers Danlos 3. I have it myself and also have several occurrences of small bleeds in my fingers as well. They occur just as you describe. I also get nose bleeds though, not as many now as I did in childhood.

  • Thanks!

    Funny thing: yesterday I revisited the hypermobility org website & printed off a 2012/revised 2013 article about Hypermobility & Illness which clarifies a consensus on the issue you're replying about. See what you think of their conclusions?

    During the 8 months since I posted my ?, above, I've studied these subjects more and am feeling a bit more aware.

    So, it's extra good to hear from you!

    Wishing you all the best

  • I didn't know they were eds related or that they had a name for ages. Comforting I suppose x

  • Yes, there is comfort in understanding. The more time that passes, the more I understand about this aspect of connective tissue disorder, eg am now about to have my abdominal aorta scanned for aneurysm (my father was either ED or Marfan & died of ruptured AAA. Thanks for your reply. xo