Can anyone tell me what this is

[Leenie0811]

I keep waking up with my legs like this and don’t know what it is… my knees are purple and there’s like a spiders web pattern going in each direction… the photos don’t do it justice but it’s very painful and I sometimes it goes numb

[Tiggywoos]

Hey lovely . I get the purple knees too and they swell . Dr no idea what it is , physio said it’s systemic . Probably worth mentioning at your next rheumy appointment if you have one ? Take care x

[Leenie0811 in reply to Tiggywoos]

Hey thanks for replying, I am supposed to be seeing them soon because I mentioned the swelling and pain but haven’t had anything yet I’ll note it down with the rest of my notes x

[Willow1414 in reply to Leenie0811]

Dear Leenie0811

Yes it does look like livdo Rash , I get this when I’m in a glare , hope you do mention it on your appointment , has it’s an indicator of not been treated enough .

❤️🦋

[Willow1414 in reply to Leenie0811]

Flare was the word I ment do say , predictive tx again 🦋❤️

[Jmiller623]

Hi Leenie. Looks like livedo reticularis to me. I get it from neck to toe when things are really bad and uncontrolled. It’s usually dark red for me but gets blue/purple like that on my hips and butt where there is a lot of fat.

It’s caused by poor circulation. Please let your rheumatologist know about this especially if it is painful. If you get any ulcerations or skin break down in those areas, go to A&E or let your GP know immediately. Some may do a work up for antiphospholipid antibodies especially if you already have a diagnosis of lupus. I am persistently lupus anticoagulant positive and was tested only because my livedo wouldn’t go away.

Hope this helps. Sending hugs. ❤️xx

[Leenie0811 in reply to Jmiller623]

Thank you for all the information is there anything they can do for the condition? I have Raynaud’s so maybe it could be because of that I’m not sure but I have the photos and I’ll be showing the specialist when I have my next appointment. Hope you are okay with your symptoms and it does get painful sometimes it’s really unpredictable x

[Jmiller623 in reply to Leenie0811]

There’s tons of info out there. It is linked to Raynauds. Livedo is essentially full body Raynauds. I like this reference from medline.

medlineplus.gov/ency/articl...

I get it when my dysautonomia is acting up which can sometimes set your BP soaring causing wide spread vasoconstriction, which leads to livedo. This does happen out of nowhere and I call it adrenaline dumping. Like having anxiety without having worries. Here is a nice paper on peripheral neuropathies and their link to livedo in lupus. I have both peripheral and cranial neuropathies, which comprise about 7% of the lupus population.

lupusnewstoday.com/2019/03/...

Some things to help are warm packs and making sure you keep your core warm. Definitely take pictures to your specialist.

[Salzer in reply to Jmiller623]

Thanks so much for these links. I hadn't realised there was a link between raynauds, livedo and peripheral neuropathy. I've just seen a new rheumatologist who finally listened to me after 3 years of increasingly troublesome legs and feet tingling and burning and he mentioned peripheral neuropathy and started me on gabapentin and ordered nerve conduction tests 😯. I have UCTD and he said he felt the neuropathy was sjogrens in flavour? He also ordered an APS screen, though previous ones have been negative apart from a few borderline positive IgMs. It is a relief to have someone take it seriously and see a connection. My late grandmother had 'bad circulation' for years which I now recognise as Raynauds. She lost her ability to walk and then ended up with a double amputation in her late 70s as it wasn't treated properly I think. Do not want to end up there! S

[Jmiller623 in reply to Salzer]

I know too much about this. My aunt went in for amputation and passed away from CAPS at age 67, which is almost a death sentence by APS. On my fathers side, both my aunt and GM had similar issues to me. I was tested for aPL because of the livedo, similar to you. I do have persistent LAC but antibodies haven’t been characterized - B2GP, cardiolipin negative.

I started as UCTD but many things including declining kidney function bought me SLE diagnosis. My rheum tested me thoroughly for Sjogrens thinking the same way yours did but everything was negative. I hope you find answers and relief soon!

[Salzer in reply to Jmiller623]

That is shocking about your aunt. I am so sorry. I do often wonder if my grandmother had undiagnosed autoimmune disease. She had chronic iron deficiency, which I've inherited, chronic high blood pressure, which I haven't thankfully, severe osteoporosis among many other issues but in those days they just had to get on with it and accept declining health.

I am glad to have finally had the neuropathy stuff acknowledged. I can remember the first time it happened, 3 years ago on the plane back to Dublin after a day in London at the Chelsea Flower Show of all things. Sun exposure fires it up big time! I thought it might be DVT (had one in pregnancy previously). GP thought it might be MS! But finally getting somewhere with it now.

Thanks again for the info. Really helps to piece this stuff together. S

[Salzer]

Hi Leenie. I wake up with a very similar thing on my legs, chest, belly and insides of my arms, oh and the very purple knees too. It seems to calm down as the day goes on. Does this happen to you too? I don't know what it is either but was going to mention it at my next rheumatology appointment. Unfortunately it's in the afternoon so I'll probably be back to normal colour by the time I see him! Will let you know if I find out anything. S

[Leenie0811 in reply to Salzer]

Exactly the same it eases up throughout the day unless I get cold then it’s all over my legs and I lose feeling in them with a tingling if you get what I mean. Don’t know if that makes sense but the best way I could describe it! X

[Salzer in reply to Leenie0811]

Hi Leenie. Makes complete sense to me! I get that too. And it's so weird how it improves over the day. I asked my new rheumatologist about it when I saw him on Tuesday afternoon. Luckily my feet were a lovely shade of brightb purple after sitting in a very uncomfortable waiting room chair for an hour. He didn't actually say much but has ordered blood tests for an APS screen. I also have Raynauds and increasingly peripheral neuropathy symptoms which he has just started me on gabapentin for ☹. Definitely worth asking your doctor about it as it is significant it seems. x

[Ingrid1234]

Some info from Derm NZ, “What is livedo reticularis?…”

dermnetnz.org/topics/livedo...

[Leenie0811 in reply to Ingrid1234]

Thank you for the link it’s got some great information in there x

[happytulip]

It looks like livedo reticularis to me. And inflammation of joints. Make sure your Rheumatologist sees the pictures.

[Ingrid1234 in reply to happytulip]

“…And inflammation of joints. ..”🤔??

====

More like inflammation of the small blood vessels just under the skin: the arterioles and capillaries . The blueness is due to deoxygenated blood.

Check out:

en.wikipedia.org/wiki/Lived...

It’s a common? 🤔skin manifestation of lupus and your dermatologist should also have a look.

[Leenie0811 in reply to Ingrid1234]

Thanks for the link I will mention it to the rheumatologist and I’ve never seen a dermatologist would I have to ask to see them or would rheumatology refer me? X

[MrsMouseSJ]

Definitely speak to your rheumatologist and worth bringing to the attention of your GP, too - they might wish to write to your rheumy ahead of your next appointment. As Jmiller623 suggests, you may be investigated for Antiphospholipid Syndrome (or APS, which I have - it's an autoimmune disorder which affects the clotting of the blood and which can occur on its own or as a secondary disorder e.g. to Lupus). Of course, it may be nothing to do with APS but if you want to find out more, there is a good charity, APS Support UK, hyperlink here:aps-support.org.uk

[Leenie0811 in reply to MrsMouseSJ]

Thank you for the link I will make a telephone appointment with my doctor so they can see the photos and see if they want to send it on or if they want me to call the nurse helpline at the hospital. I have recently had to have specialist blood tests because my mum has a platelet disorder and it could be hereditary but mine came back negative would that be the same thing? X

[MrsMouseSJ in reply to Leenie0811]

APS is, not, as far as I am aware a platelet disorder - although thrombocytopenia (low platelet count) can be one of its symptoms. I have this, on and off, along with leukopenia (low white blood cell count). Instead, APS is an autoimmune condition. I guess once you get your blood test results, you and your doctors will know more - including where to go next.