What is this ? ❄️

[LauraMk30]

Hey,

The cold always seems to get right into my bones, for a few weeks now it’s been making strange patterns on my skin - both legs & inner thighs.

I know the cold is getting to me either way. It doesn’t hurt to touch I just feel like My lower parts are as cold as Ice. My feet feel numb at night, & I get pins & needles & spasms in my left leg & foot. I’ve tried to layer up, & wear 2 pairs of thermal leggings etc, for when I’m at home or outside but nothing seems to stop this strange manifestation.

Last night I got in the bath to see if it would warm me up, but it made it worse & my legs & thighs went a strange sort of purple. I looked like a patch work quilt!

I’ve noticed I get it more when I’m inside the house, it has been below freezing in here at times, due to it being a restored 12th century house. & the sash windows are locked but we still get the bitter cold coming through.. ❄️ doesn’t matter if I’m in or out it just keeps happening & I’m running out of ideas...

Can anyone tell me what you may think it might be? I’m a hot water bottle addict, It helps with my pain but also keeps me toasty day & night. I’ve bought a large fluffy dressing gown & pjs to match but im still frozen from the waist down, Im not sure if it’s circulation, or something else.. any advice would be a blessing

Many thanks in advance xx

[Hidden]

My arms look like that quite often. I am not cold though. Gp and Rheumy had no explanation. Curious if someone has an idea.

Keep warm

Xx

[LauraMk30 in reply to Hidden]

Thanks Ursi 🌟

Staying warm is a must this Christmas. Probably doesn’t help that I still have the flu 12 days & counting!

Hope your ok & life is treating you somewhat kindly.

Merry Christmas 🎄 xx

[Daisy78]

Hi lauraMk30

Was just flicking through the posts and saw your pic,

I'm no expert but I have the exact same on my legs and my Rheumy told me mine is livedo recticularis.

I have secondary raynauds and some kinda CTD and still in the process of a diagnosis,

I can relate to your post so much it sounds like me!!!

Keep warm x

[LauraMk30 in reply to Daisy78]

Hi Daisy78

That’s refreshing & thank you for mentioning it. I will do some research.

I have raynauds but never had anything to this extent on my legs. I’m not sure what CTD is? I do hope you get a diagnosis.. I’m the same still trying to find a safe place to land, no definite diagnosis yet.

Well we’re 2 peas in a Pod & it’s nice to know I’m not the only one with patch work quilt pattern 🤗

Hopefully I can see the doctor in the new year & get some answers.

I’ve been waiting to see a new rheumy for 4 months.. & counting. Waiting game is wicked.

Stay toasty too 🔥☃️

Merry Christmas 🎄 xx

[PMRpro in reply to LauraMk30]

Make a list of such delights - together with photos like this one. It is livido reticularis or something closely related. They have a habit of not appearing when required - so take the evidence with you!

[Daisy78 in reply to LauraMk30]

Sorry LauraMk30

I put CDT as connective tissue disorder,

At my very first rheumy appointment she spotted it straight away while doing an all over examination,but didn't make a big deal of it.

Only because it's a wacky name I remembered it!!

Same as you I'm cold to the bone constantly, it's hard work!! I have just bought some fleece lined leggings (don't know if I can say the shop but it starts with pri and ends with mark, hehe) for a bargain price £6 and wow they are so thick and cosy underneath my trousers

I do hope you can get things sorted out in the new year

Merry Christmas and warm hugs x

[LauraMk30 in reply to Daisy78]

Hey Daisy, sorry I miss read it. Ooopsie.

I’ve recently bought those leggings from prinami 😁😉 they are sooooo soft & cosy!

Can I ask, Do your hands go a reddy blue when your at home ? I noticed yesterday it looked like my hands had been in Ice water as they were bright red totally freezing & pins & needles like crazy. Just like if you were outside in the cold.... so weird !!

My body really confuses me lol!

I hope you have a lovely Christmas daisy & please keep me posted on your progress & journey ❤️ stay warm too Hun xx 🔥❄️

[LauraMk30]

Thank you PMRpro,

I’ve just been researching Livido Reticularis and it’s definitely spot on. It doesn’t go away with heat.. so it could be vascular related. Yes I have plenty of pics to show whoever is on the list...

Evidence is key for me, how are you? X

[Lupiknits]

I have the same, winter and summer. I have a diagnosis of Secondary Raynaud's and an "oh yes, livedo reticularis" from rheumy.

I take malar rash selfies but this is one thing that seem permanent. Rheumy didn't give an impression of being interested, just expecting it x

[LauraMk30 in reply to Lupiknits]

Hey lupiknits,

It seems to fit the bill if I’m honest. Does that mean it’s vascular related? I’ve had it before many moons ago but lately it’s prominent & long lasting. Doesn’t go away when I use a heat compress or hot water bottle. I could literally layer my pjs & it doesn’t go away.

That’s the thing I get pee’d off about is that rheumy’s overlook the possibilities & class it as nothing.. its most definitely something.

Sorry to hear you have experienced this sort of thing. I’m sat with the heating on, flannelette Pjs slippers & fluffy dressing gown, with 3 Christmas hot water bottles & im still like an icicle.

I hope you have a lovely toasty warm snuggable Christmasxx

[Lupiknits in reply to LauraMk30]

Thank you. I have a selection of my large thermal collection on, too. I think the livido reticularis is related to constrictions on the capillaries, but this is much better answered by someone who knows more than me! For me, it seems to accompany the Raynaud's and my instructions are the usual ones to keep warm, and pay particukar attention to extremities to avoid ulcers, chilblains and such. In my case I keep a careful watch on my feet.

I have very pale thin skin and I think that may accentuate the discolouration more.

[Ianrussell69]

My legs go like this a lot when they are cold

[LauraMk30 in reply to Ianrussell69]

Hello Ianrussell69

Oh dear, Every time I get really cold I wonder what’s going on underneath! There is no way this Christmas that I’m gunna shrug this frozen feeling. It’s here to stay I think!

I’m sort of glad I’m not the only one who has this problem.

Do you get pins & needles or any other unusual sensations in the areas your effected ?

[Ianrussell69]

Hi I work on building site and it can get quite cold I’ve started to to use hand warmers in gloves and in pockets and foot warmers and it has really helped if you go to the gp they might prescribe nefedapine this sometimes helps well it used to no longer has much effect for me now

[LauraMk30 in reply to Ianrussell69]

Jeez! You definitely will freeze over on a building site. My dad sure does.

That’s a good idea about the hand warmers THANKS 🙏🏼

I’ll ask my Gp about it, mind you it’s like getting blood out of a stone but it’s worth a try

Thanks again your advice has helped very much x

[Puska]

Have you been tested for APS - associated with SLE and livedo a symptom.

[LauraMk30 in reply to Puska]

Hey Puska,

Thanks for replying,

I’ve been awaiting for test - APS. I was suffering badly with blood clots in (February) then on & off swelling etc... 860 d-dimer results & nothing done the

waiting game is somewhat wicked!

[Pinkcrush]

I have that and was told it's Livedo reticularis it's just a strange thing my skin does lol

But up till doctors saw it I just though it was just my skin

[LauraMk30 in reply to Pinkcrush]

Hey Pinkcrush... 👋 love the name!

Omg... just your skin... hmmm!! will be showing the doctor... my skin is not normally purple & blue. My nail beds are the same & my toes. I have anaemia so my skin has changed from a subtle tan to white as snow..

feeling & looking like a vampire lol! With blue skin in places... weird!