Achenbach Syndrome: Hey Everyone 🖐 Just wondering... - LUPUS UK

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Achenbach Syndrome

KMT16 profile image
31 Replies

Hey Everyone 🖐

Just wondering if anyone else gets this non-trauma finger bruising (pic attached) ...

I have a history of aura migraine and Raynauds, so seems like underlying vascular issues. Main diagnosis is Undifferentiated Auto-Immune disease treated with HCQ.

- Kate

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KMT16 profile image
KMT16
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31 Replies
Barnclown profile image
Barnclown

In my case these non-contact tissue bleeds seem to be due mostly to hEDS + small vessel vasculitis...my rheumatologist calls them ‘paroxysmal haematomas’...I’m 66 now, my lupus was infant onset & i’ve had these bleeds in my extremities including mouth since my teens, although when I got on mycophenolate + pred + IVIG the frequency reduced. We’ve discussed these many times here over the past 10 years...if you run searches using a few different terms, these threads might show up...❤️🍀 Coco

KMT16 profile image
KMT16 in reply to Barnclown

Thank you Coco ❤

Barnclown profile image
Barnclown in reply to KMT16

Just tried searching, but only found stuff from 5 years ago...way before I understood my version of this a bit better....if I find something more recent I’ll add a PS ❣️...way back, I wondered if I had Achenbachs, but seems my existing diagnoses cover my version of this 🤷🏼‍♀️ Have you been diagnosed with AS?

KMT16 profile image
KMT16 in reply to Barnclown

From the small bit of research I've done, it seems pretty rare and investigations seem to summarise it as self-limiting and non-urgent. My concern is whether it is just limited to limb extremities as it would be a serious worry if it were to happen around the brain or other vital organs :/ Some studies refer to that as a potential possibility, but conclude that occurence isn't frequent enough to investigate further.

MEGS53 profile image
MEGS53 in reply to KMT16

I get it, but only on my hands (mainly fingers) and toes (infrequently). It does sting when it first happens and the bruise appears almost immediately. I don't know the cause and none of the Drs seem interested. Good luck with the tests.

Barnclown profile image
Barnclown in reply to MEGS53

Yep: that’s v like mine 👍...except can’t quite be called bruises cause these occur spontaneously without contact injury

MEGS53 profile image
MEGS53 in reply to Barnclown

Mine also occur at times without contact. But I nearly always feel a stinging pain first.

Barnclown profile image
Barnclown in reply to MEGS53

Yes: all my version of these has always started with the stinging,..& my version of this stinging hurts like billy-o...also the area is sore, inflammed & stiff for at least a day. After decades I’d these, frankly, I hate them 🤷🏼‍♀️

MEGS53 profile image
MEGS53 in reply to Barnclown

Ah, yes sounds similar to mine, but yours seem much worse and more frequent. Yes, it does sting for quite a while - you have my sympathy and hugs!

My rheumy did say I was hypermobile, but left it at that.

Barnclown profile image
Barnclown in reply to MEGS53

👍💐❤️🍀

KMT16 profile image
KMT16 in reply to MEGS53

Thanks for your reply. Mine has been mainly hands and twice on right foot, base of little toe. The feet ones felt like I had a piece of gravel in my shoe and there was more swelling than I get in the affected fingers. I am classic demographic for Achenbachs - age 43 - possible early onset menopause.... 🙄😆

It's reassuring to hear you've had the foot ones as well, as there's not much info about those available on the net. They actually scared me more as they went very blue at first and I really thought they were blood clots or something strangulated 😱

It makes so much difference knowing you're not alone in your experiences! xxxx

MEGS53 profile image
MEGS53 in reply to KMT16

You are not alone - sadly I think many more of us have this symptom. We just ignore it as one of the less worrying issues. Take care and best wishes.

Barnclown profile image
Barnclown in reply to KMT16

Yes...I was concerned about exactly the same thing at first...for what it’s worth: bascially, I hid my concern about that from my rheumy & concentrated instead on whether, in time, her diagnoses proved convincing & whether I responded pos to her combined therapy meds ...but I always take photos of these ongoing, which acts as a sorta ‘log’ re severity, frequency, location etc.....

once frequency of my ‘visible’ tissue bleeds seemed to consistently reduce, I sorta thought: oh well 🤷🏼‍♀️ I’ll just trust her to know whether this endangers my internal organs....but when I am, say, fighting an infection, or recovering from the effects of a procedure or surgery, the frequency does tend to increase a bit. Even now after decades of these, I find them spooky...

but I’ve now encountered enough hEDS & vasculitis & lupus patients living with these to feel we probably just need to be more alert to increased risk if/when stuff like our petechiae, ecchymosis & livedo reticularis consistently worsen, or or regular blood monitoring throws up strange results...

KMT16 profile image
KMT16 in reply to Barnclown

Thank you, that makes a lot of sense to me - and it's such a relief to read that someone has suffered it long-term without it escalating! ❤

I totally get why you kept some of the concerns to yourself as I also don't want to overwhelm my GP or consultant and have them think I'm a panicker or hypochondriac 😕

Barnclown profile image
Barnclown in reply to KMT16

👍EXACTLY my reasoning...🤷🏼‍♀️🤞🍀

MEGS53 profile image
MEGS53 in reply to KMT16

Yep, I mostly keep it to myself, for exactly the same reasons. It's sad that we have to do this, don't you think??

KMT16 profile image
KMT16 in reply to MEGS53

I think we become hyper-aware of our bodies when we have these conditions and many of us have to rely on self-management a lot as there are so many variables involved. That's exhausting in itself!

I was just so relieved to eventually be referred to rheumatology and realise that all my lifelong complaints were related and recognised 😄🎉🎉

MEGS53 profile image
MEGS53 in reply to KMT16

I totally agree! I hope you have a good and understanding rheumy who will start you on effective therapy. Good luck with it all, xxx

KMT16 profile image
KMT16 in reply to MEGS53

Thank you ❤ Best wishes to you and Barnclown too xxxx

MEGS53 profile image
MEGS53 in reply to KMT16

May I ask whether your rheumy dx'd you after positive ANA/dsDNA blood tests?

KMT16 profile image
KMT16 in reply to MEGS53

I had consistent, slightly raised ANAs

MEGS53 profile image
MEGS53 in reply to KMT16

Ok, thank you. I'm pleased to see you have a good rheumy who looks a the whole picture. You're lucky as they're not all like that. All the best on your journey, xxx

stiff19 profile image
stiff19

I had this on my fingers as a first symptom to my ongoing problems. It cleared up on its own and has only happened a couple of times since in smaller areas of my fingers.

I’m sorry I have no advice I was told palindromic rheumatism given hydrochloraquine which helped this symptom but other symptoms continued to date was taken off hydroxychloroquine and told No palandromic rheumatism but fibromyalgia 🙈😡 And discharged. I have many more and ongoing symptoms since.

Have you been on hydroxychloroquine for long?

Sorry no advice But yes I get this.

Best wishes 🙏

KMT16 profile image
KMT16 in reply to stiff19

I've been on HCQ for three years next month. It has eliminated my lifelong mouth ulcers and minimised my joint pain (although Turmeric supplements are possibly more effective for the latter).

in reply to KMT16

I’ve only had this once in my thumb last year - the day following a large steroid injection. I don’t know if the two were in anyway connected. It stung a lot and I decided it was because I’d attended my son’s graduation earlier and clapped a lot. My entire thumb went dark particularly around the joint. I looked it up and Achenbach Syndrome came up and it was a perfect fit. I have overlap of Systemic Sclerosis and Sjögren’s CTDs.

tiredmum profile image
tiredmum

Hi there, yes I get this too but mainly on my toes. I haven’t hurt myself and does start with a pain in the extremity then all of a sudden goes black. I mentioned it to my doctor who was not bothered by it at all. I felt like I was wasting her time and didn’t mention it to my Rheumy. At least I now know I am not the only one. Thank you.

ShannonB profile image
ShannonB

This forum is so amazing. I literally had this three weeks ago for the first time ever! I’ve had lupus for 30+ years, had never heard of it and had no idea what was going on. Like all of you, it hurt at first and felt like something went pop and then looked just like yours. I’ve had it once since. I didn’t see a doctor but thought I’d mention it at my next appointment. So it’s a common lupus thing? I couldn’t find any studies connecting it online.

Horsewhisper profile image
Horsewhisper

Hi Kate - yep I get this from time to time. Bruising-style patches appear on the palm side of my fingers like your pic for no apparent reason. I do have achey-pain with it too. I have taken pics to show Rheumy but he’s not that bothered. I get Raynaud’s symptoms on fingers, cheeks & nose in the winter. In addition to UCTD, I am currently being treated for another autoimmune condition called Giant Cell Arteritis which is a type of vasculitis, so it’s all probably in with the mix.

Mimi1900 profile image
Mimi1900

Is it actually a bruise - takes a long time to go away or just Raynauds in one finger? I recently just started getting the Reynard effect on one finger instead of all like in past

KMT16 profile image
KMT16 in reply to Mimi1900

It's a bruise that lasts a few days x

herdysheep profile image
herdysheep

Your photo was very helpful. Thank you. Exactly as I get. I have PMR and currently being investigated for high BP and high cholesterol. Any scratch turns into mini bruise type blotch. The bruise thing on fingers (and toes) stings like the clappers for a few hours and then no pain at all with visible bruise going in few days. Sometimes bit of swelling at first.

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