Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

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

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
LupieLain
New Member
Joined : Oct 2013
Posts : 12
Posted 10/11/2013 9:13 PM (GMT -7)
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

profile picture
Barbara Lee
Veteran Member
Joined : Sep 2003
Posts : 2889
Posted 10/11/2013 9:22 PM (GMT -7)
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
profile picture
LupieLain
New Member
Joined : Oct 2013
Posts : 12
Posted 10/11/2013 9:47 PM (GMT -7)

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)

profile picture
couchtater
Elite Member
Joined : Jul 2009
Posts : 14475
Posted 10/12/2013 11:46 AM (GMT -7)
The fibro could be causing the skin thing.
profile picture
Mandi Jayne
Regular Member
Joined : Aug 2014
Posts : 24
Posted 8/30/2014 11:52 AM (GMT -7)
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.
profile picture
Mandi Jayne
Regular Member
Joined : Aug 2014
Posts : 24
Posted 8/30/2014 12:19 PM (GMT -7)

LupieLain said...
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

Lanie I am having these exact symptoms. I wrote on a post above I would love to get in touch with you.

Post Edited (Mandi Jayne) : 8/30/2014 1:28:35 PM (GMT-6)

profile picture
LupieLain
New Member
Joined : Oct 2013
Posts : 12
Posted 8/30/2014 1:36 PM (GMT -7)
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.

profile picture
Mandi Jayne
Regular Member
Joined : Aug 2014
Posts : 24
Posted 8/30/2014 1:48 PM (GMT -7)
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?
profile picture
LupieLain
New Member
Joined : Oct 2013
Posts : 12
Posted 8/30/2014 1:53 PM (GMT -7)
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?

profile picture
Mandi Jayne
Regular Member
Joined : Aug 2014
Posts : 24
Posted 8/30/2014 2:09 PM (GMT -7)
I am so extremely happy you got an answer and i will be bringing this to my rheum and neurologists attention. We thought it was MS or an auto immune disease but after 3 sets of blood work, 3 MRIs, and a spinal tap all that was rules out. They told me
They felt it was fibromyalgia but now with the burning they aren't as sure. At this point I'm willing to try anything to get the burning to stop.

Thank you again!!! God Bless!!
profile picture
Segs16
New Member
Joined : Feb 2015
Posts : 1
Posted 2/10/2015 9:13 PM (GMT -7)
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.
profile picture
TRCSC
New Member
Joined : Feb 2015
Posts : 4
Posted 2/11/2015 5:46 AM (GMT -7)
I itch all the time, even places that don't have a rash or dry skin.
profile picture
AndrewPug
New Member
Joined : Jun 2015
Posts : 1
Posted 6/29/2015 9:30 PM (GMT -7)
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
profile picture
BrayJ
New Member
Joined : Jan 2021
Posts : 2
Posted 1/16/2021 3:45 AM (GMT -7)
Hello All 😊 I started having mild sensations on back side of my legs a feeling as if water was flowing down them .. this occurred for short periods of time & would go away .. I believe it was 1 1/2 to 2 yrs ago .. And now I am having sensations that feels like I've rubbed Iceyhot Cream into my skin this started about 3 weeks ago & was very mild sensation & only on my wrist area it would go away & pop back up off & on while gradually getting worse each time rite now is by far the worse it's ever been 💯 my whole body even my mouth & eyelids & my stomach feels like I swallowed mouth wash ... it's not going away now & honestly I am worried ..any new information or help would be greatly appreciated thank you in advance.
profile picture
Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/24/2021 11:03 AM (GMT -7)
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).
✚ New Topic ✚ Reply

More On Lupus

Complementary Therapy For Lupus, Part II

Complementary Therapy For Lupus, Part II

Autoimmune Disease:  What Are They And Do I Have One?

Autoimmune Disease: What Are They And Do I Have One?



HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter InstagramInstagram PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.