Hi
I have Livedo in the hands that appears more in ambient temperature (as opposed to cold weather)
But it has now has spread to the tops of my feet.
Anyone else have this problem?
I'm not sure what it means, back to the Rhumy I suppose...
Dear Ocker,
Have u have been diagnosed with livedo reticularis - a vascular condition (but usually on legs) ,or is it just a livedo 'net- like' rash that come up in warmer environments per se ?. What colour- red or more purple? Any itching, pricking, swelling? Could be heat intolerance, due to other medications you take - ie allergy, another disorder- underlying or known( such as Rhuema or arthitis as Tizzy says) idiopathic or EM. Livedo can also accentuated by exposure to cold .
I can only speak as an EM'er . To my knowledge a pinky net like mottled 'livido' rash usually accompanies or precedes a flare. Although you can have rarer blind flares (no skin colour change but you still get the burning pain) or Raynaulds white flares (Raynaulds can co-exist with EM).The colour change is due to dilatation- constriction of, and stagnation within, the capillaries and minute small blood vessels in the affected areas.
I always have varying intensities of livedo prior to morphing into 'red lobster 'flaring with swelling but I also do experience livedo with white and blind flares.
Livedo can be symptomatic of the EM syndrome , co-exist or due to EM related complications.The slides i attach are very informative with photographic examples of types of livido
Ultimately i would advise you seek out a specialist - and obtain the correct medical diagnosis
I also attach some research with photos.
God bless
mads
352-LividoandEMplusphotos.pdf (613 KB)Hi Tizzy
Thanks for the reply. I'm in Melbourne... a bit colder sometimes down here..,
Tizzy said:
Hi Ocker - no I don't have this problem , but I have seen it in patients with certain kinds of arthritis . Have you got any other health or immune issues. I am not a doctor ,these were patients for Physio treatment- certainly I would have associated it with colder weather .Maybe others will have more information. Good luck
Ps - were in Aus are you? I'm in Brisbane
Thanks for the info mads... very interesting!
mads said:
Sorry- forgot the slides and photos ;-)
No worries. Glad to help. Sharing , caring, raising awareness, educating ourselves , supporting each other, thats what its all about. This syndrome is an enigma. Clever, wicked, disabling, mysterious.... it morphs daily.
God bless
mads
I have what looks like livedo on my feet. The net-like pattern of reddish/blue/purple. I have a picture. I’ll post once I figure out how to post pics.
Also so you know, I haven’t been diagnosed yet. I go back to the dr this week.
I posted it. My name is on it. It’s labeled Livedo in EM? If pics are in the same order on your device it is the 9th picture from the beginning.
Thank you so much for sharing photos Sharon. The attachments above highlight all types of livido. All Em'ers have this net like pattern to varying degrees. It sorts of acts as a 'flare' alarm for most of us. Saying that my skin always has a terrible mottled appearance.
God bless
mads
Thank you mads. I have the mottled look most of the time too. I didn’t know it could be an alarm so I’ll try to notice next time.
Hi Ocker.
I went through a period last year where I had it over most of my body almost constantly. I was at my doctors office and when I walked In I was covered in purple webbing then as the warm temp of his office took hold you could watch the red EM start to cover it. It was after this even he sent me straight to the ER where they found nothing wrong with me. I have yet to find a doctor who can tell me why it happens because all of the testing they do comes back normal!
Have you found out anything about the cause of yours? They just tell me not to get too cold but mine happens like yours when it is typical room temperature.
350-IMG_0409.JPG (713 KB) 351-IMG_0315.JPG (45.6 KB)
Hi Ocker.
I went through a period last year where I had it over most of my body almost constantly. I was at my doctors office and when I walked In I was covered in purple webbing then as the warm temp of his office took hold you could watch the red EM start to cover it. It was after this even he sent me straight to the ER where they found nothing wrong with me. I have yet to find a doctor who can tell me why it happens because all of the testing they do comes back normal!
Have you found out anything about the cause of yours? They just tell me not to get too cold but mine happens like yours when it is typical room temperature.
Alina Delp said:
Hi Ocker.
I went through a period last year where I had it over most of my body almost constantly. I was at my doctors office and when I walked In I was covered in purple webbing then as the warm temp of his office took hold you could watch the red EM start to cover it. It was after this even he sent me straight to the ER where they found nothing wrong with me. I have yet to find a doctor who can tell me why it happens because all of the testing they do comes back normal!
Have you found out anything about the cause of yours? They just tell me not to get too cold but mine happens like yours when it is typical room temperature.As you can see by the pics I have it and it is quite warm out at the time!
Hi Guys,
Alina - your mottled body looks just like mine :) I am constantly like this to, whether its hot or cold. The body is in a permanent state of 'vasodilation' to varying degrees. See the research/photos i attached earlier on in post.
God bless
mads
Hi
I went to the Rhumatologist and he did more blood tests, specifically antiphospholipid syndrome.
All came back clear, so idiopathic at this stage...
THank you Mads. I read the research paper and it was very interesting.
Maybe I should request a bone marrow biopsy since I have all of this and I keep getting unexplained blood clots. I even had one in my arm! They told me that is extremely rare unless you have had and injury or surgery requiring the arm to be immobilized. It is one of the few tests I haven't had done.
I haven't had my livedo problem in well over a year now. It came on suddenly and stuck around 24/7 for several months. It then just disappeared as quickly as it came! weird!