Anyone had this icy-hot burning skin sensation with no rash

Hi,

I am brand new to this DX.  Before finding out I had lupus I went to the neurologist because of the pain and a burning sensation on my skin nearly all over my body at any given time, even in my mouth and tongue.  It feels like I have been lathered in icy hot ointment, but there is no visual indication of any rash or anything going on on the skin.  I will also get a taste in my mouth like mentholatum or Vicks.  I had a nerve conduction test that came back normal, but I do have two bulging disks in my neck.  The nuero said she was at a loss.  Anyone had this?  Is it a lupus thing?

Thanks,

Lainie

Barbara Lee said...

Lainie:

My muscles burn from my Fibro, and I know some folks have itching, but I've never had both of them together. What you're describing I've actually never encountered. Not sure if this is a lupus thing or not. Maybe some other lupus folks will be along and can give you some answers.

How are you feeling tonight? I hope that you're feeling a bit better tonight. How old are your kids? It's common to get sores in our mouth and nose, they're referred to as ulcers. I can't ever remember the taste of Vicks in my mouth though.

I hope they can get this figured out for you really soon. I'd write that symptom done in your notebook to ask your Rheumy the next time you see them.

Take care and I hope you can rest tonight.

Hugs,
Barbara

I had a previous diagnosis of fibro but I never experienced this until the last couple of years. It is pretty annoying. I am feeling OK. The prednisone has certainly helped with the swelling and stiffness in my joints. I am just trying to get a grasp of this mentally and put all the pieces together. I have a 5 year old daughter, 3 year old boy/girl twins and my youngest son just turned 10 months. Both boys are special needs with neurological and cardiac issues. My oldest son, 3, has autism also and we are suspecting the youngest one will too as he is completely emulating his older brother in lack of development. The girls are very healthy, so the docs are suspecting something genetic. Off topic, I know, but I think adds to the picture of my stress level and having to get a grasp on this whole lupus thing so I can better manage it to be there for my kids. Hope you are having a great night!! Lainie

Post Edited By Moderator (Lynnwood) : 10/14/2013 8:11:03 PM (GMT-6)

Lanie I am hoping your still seeing this. I have these EXACT symptoms. I woke up 3 weeks ago with my mouth (including tongue burning). The next day my eyes and skin burnt as well. There is no signs of anything wrong. I have had every test you can get everything is normal yet I burn. The tongue is pretty much 24/7 but the skin is off and on.

The doctors are at a loss. Did yours ever stop or did you find out what was causing it?

Any help would be appreciated.

Hi! I can tell you that I do have an answer. Mine goes on and off now... BUT they are seizure/neurological in nature. I was absolutely shocked when the 4th, yes 4th, neurologist I went to actually listened and gave me an EEG. Turns out I am having deep seated parietal lobe seizures and they cause a myriad of weird symptoms, and they are rare.... like 5% of the population so no wonder everyone is at a loss. So now I am on seizure meds and this has helped so much!! Keep pressing until you find someone to listen and do the tests. Ask about an EEG, not just a quick one, but one where you sleep fast and get the lights flashed and all that. A thorough EEG. I was not jerking or anything and I was having a full blown seizure during the test. All I felt was these weird sensations. Now I am on Keppra and Gabapentin. Although I am tired all the time from the meds, I can actually feel like I am not on being bathed in BenGay ointment!!

I hope this helps!! Keep me posted :)

Lainie

Mandi Jayne said...
Lanie I am hoping your still seeing this. I have these EXACT symptoms. I woke up 3 weeks ago with my mouth (including tongue burning). The next day my eyes and skin burnt as well. There is no signs of anything wrong. I have had every test you can get everything is normal yet I burn. The tongue is pretty much 24/7 but the skin is off and on.

The doctors are at a loss. Did yours ever stop or did you find out what was causing it?

Any help would be appreciated.

I don't know if anyone can feel the heat... Never thought to ask :) But I have these sensations in my mouth and tongue, head, arms, legs... pretty much anywhere. The newest sensation was the feeling of urinating myself and I could literally feel water flowing down the back of my leg... but I was completely dry. This is very annoying. Just saw the neuro the other day and he said it was seizure related too and adjusted the meds. I guess if it was not a flowing sensation it would have pointed more to MS. But it is all just too freaky. I have become a fav patient between my neuro and my rheumy... I guess it is fun for them to have a challenge :) I hope you get the answers you need!

Mandi Jayne said...
Seizures!!! Wow I'm shocked . Thank you so so so much for writing me back. My tongue and mouth burns 24/7 almost my skin is periodically through the day but it is this icy burning sensation and it's on the actual skin but doesn't produce a rash or anything . Sometimes my family can feel heat on my arms when it happens. Does this sound like yours?

Hi there, I started having the Icy hot burning sensationonly on my neck about a month ago, and thought I was crazy. Now I feel better I'm not the only one. Doctor said oh, let's run tests, but they can't even diagnose me! Forget them, I'm going to go to a homeopathic doctor who will cure me for sure. He cured my plantar fasciitis. I feel like we are just guinea pigs to these doctors.

LupieLain,
I have the same symptoms of having my entire body feel like I have been bathed in Bengay. I have an EEG scheduled one is a normal one and the other one is where I will be monitored at home wearing a machine for two days. Is the sleep fast EEG different than these two tests? Thanks Andrew

I don't have lupus, but I have ice cold sensations on the skin, burning, tingling and numbing. Sometimes it feels like cold water is flowing down. You need to get tested for small fiber neuropathy. Read about it online. Skin biopsy since most of the other tests will be negative (EMG, nerve conduction are negative in small fiber).