Just wondering if anyone else has livedo and a burning thigh sensation?
My livedo showed up right before burning.

Welcome Goosiegoo,

Hopefully Healthgirl will see your post. She will have some input on livedo.

Janie

Here I am and yes I do and here it is


Sent from my iPhone using Tapatalk

Wow, your'S is more pronounced than mine.
My docs just tell me it's normal. Seems crazy to me that it just showed up one day with the burning sensations. Do your thighs hurt? I have trouble wearing pants. What does your doc say about it?
My doc thinks I have genetic mutation causing my SFN. I'm wondering if I have some autoimmune issue as my sister has MS. All testing thus far is normal for autoimmune.

No this isn't normal. This never happened in my life. I'd go out and get a tan, not turn purple with circles. No doctor has told me that it is normal. It is from autonomic nervous system damage that causes vasospasm and body temp to cool the skin can not be regulated.
Yes my thighs do hurt. Feel like I do 200 squats a day, from nothing. Also skin burning started on my thighs. This reaction to the sun has calmed a bit. Last summer was not as bad as 2015 when it started for me and my kids. They have no REAL answers for anything. The closest they can come for us is that we have Ehlers Danlos syndrome and some thing triggered us in to autoimmunity on top of it. I think there is more figuring to be done. It's all just too freakish.

Livedo Reticularis is an autonomic dysfunction causing spasms in the medium sized blood vessels. It causes NO burning or any type of pain. That being said, it can accompany other conditions that do cause pain, like SFN. Many people with autonimmune disease have Livedo reticularis.

Livedo is caused by many disorders.

Here is a list for example:

Livedo reticularis - Wikipedia

My docs have tested me for autonomic damage through sweat test and QSART
And they sai I don't have it. Crazy freakish!! Do you have trouble wearing pants?
Are they treating you with ivig?
My sister has MS so I wouldn't be surprised if mine was autoimmune.
Have you had genetic tests for scn9a mutations?
I'm getting my results back soon.

Just because your doctors found you don't have autonomic dysfunction in other areas, doesn't mean that your livedo isn't autonomically based. You can (often) have just one or two autonomic dysfunctions...especially early on in the autoimmune process. Do you have ANY autonomic symtpoms...like dizziness when standing or heart racing? My livedo showed up years before any other symptoms (and was just in my thighs), then spread to lower legs, arms, and now 20 years later, includes front and back of complete torso.

But remember, we know there ARE other causes of livedo.

I do have mild allodynia (which is the name of the condition when your skin is very sensitive to the touch, like pants, etc) on certain areas of my legs, but I can wear pants without a problem. It is not related to my livedo...it is as aspect of the SFN (small fiber neuropathy).

I do receive IVIG for both immune deficiency and neurological damage from Sjogren's.

If you had a skin biopsy, then you would know for sure whether you had SFN (causing the pain) and also any autonomic damage (as they check the autonomic fibers).

Skin biopsies are the better test to see if there is small fiber damage.


Sent from my iPhone using Tapatalk