I was wondering if anyone experiences burning skin all over. Hands feet and legs the worst. I can’t tell if I have a marler rash but my face looks and feels sunburned and it’s November in new York. Still in between diagnoses and so confused. Thanks for any input
I've been experiencing (as something new) the feeling of needles being shoved through my fingers or the fleshy part of my palm. It also happens with my toes. Is that anything like what you are experiencing? As for the rash, I found it very beneficial to use Google images for pictures of all the rashes. In fact, when the rheumatologist was first considering diagnsoses, he said "Well, it looks a bit like lupus and a bit like RA" but I'm not so sure it's either one. Anyway, I went home and read about lupus which I didn't know wnything about (still don't feel like I do really) . The marler rash was mentioned and I googled it and because of the diversity of pictures, I could tell that what everyone thought of as pretty cheeks with blush was, in fact, a mild marler rash. Even today, I was trying to describe a rash to a friend (It's purple but doesn't quite look like a bruise but damn thing is on my face. Why couldn't it be, oh, I don't know, on my back? Anyway, once again "Google images" is what gave me the visual information that I needed. There are also a lot of sites that discuss the rashes. Are you wearing sunscreen all the time? I was told it's necessary not only outdoors but indoors too.
Hello lambchop,
The sensations your getting of burning skin can be caused by the central nervous system...raynauds can causes these issues besides as they can be more Neuropathy symsptoms.
The links below may help you.
http://www.footvitals.com/nerves/neuropathy-in-feet.html
http://www.mcvitamins.com/Causes%20of%20Neuropathy/lupus-neuropathy.htm
As i get these symptoms and i have raynauds besides central nervous issues besides..reagrding your face and the malar rash (butterfly rash) that mainly keeps to the face but Roascea can cause this issue as my sister suffers with it and her face is pure red and these two links to slide shows may help you also, mainly the 2nd one.
http://www.webmd.com/skin-problems-and-treatments/ss/slideshow-common-adult-skin-problems
http://www.medicinenet.com/image-collection/port_wine_stain_picture/picture.htm
Diagnosis at times can be hard but in the meantime you have our full support.
Love Terri xxx
When this first happened I kept going to the neurologist. I have had at least five emgs and they all said something different. I’ve had brain MRIs. All normal. My first neuro said this is rhemo stop coming to see me. I never had joint pain but now starting in hands. I have bad arthritis and herniated discs etc that they say isn’t from lupus I know this is neuropathy pain but can that be the only and presenting problem with lupus? My primary wants me on plaquinel and rhemo thinks my diagnoses is still UCTD. Bottom of feet are so sensitive and balls of feet and fingertips have no fat pads left. That’s for any and all input. You ladies have helped more than any doctor. I actually went to one neuro who never met me before said that my burnings shins and feet were because I never had a child!! Said it was psychosomatic.
You should see if you might possibly have Eryrhromelagia… It’s a form of neuropathy… I have that and Lupus, although mine are considered independent conditions… It can cause burning all over, but mainly in your extremities, and I get a rash at times even though that’s not common… Do your hands or feet ever appear red also with the burning?
Hello lambchop,
The emgs you had are the same as what i had...i had two and they both showed nerve damage and the amount of electric which hits the nerves besides muscles through the body.
You can actually get joint pain in the hands from raynauds it's a terrible disease and it also comes with UCTD and here's what else follows with UCTD on this link...we have a few members with UCTD.
http://www.hss.edu/conditions_undifferentiated-connective-tissue-di...
Your fingers and feet having no fat pads comes from scleroderma which i have, which is also involved with UCTD which it shows in the link....if you do have UCTD then you've still got a good many issues involved with it alone and scleroderma usually comes presented with Raynauds which my Dermo told me.
http://www.thedoctorwillseeyounow.com/content/autoimmune/art2107.html
Some of these specialist's excuse my french talk through their 
...i've got stretch marks on me through steriods years back and the amount who have said to me over the years how many children have you got...well i won't even comment on my answers.
Love Terri xxx
Erythromelalgia is most likely the issue here, people with RA, Ankylosing Spondilitis and Lupus can have secondary erythromelalgia as part of the autoimmune disease. I have it, and yes, it can make your skin burn all over. Check out the following two links, the first one is from my Lyme disease blog (I have both Lyme and Lupus):
http://lymetwistontherocks.blogspot.com/2011/01/pain-that-lyme-can-...
http://en.wikipedia.org/wiki/Erythromelalgia
Erythromelalgia is a neurovascular condition, just as Raynaud's is, but they are SEPARATE conditions. I have BOTH erythromelalgia and Raynaud's. There is a group here for people with erythromelalgia: http://www.livingwitherythromelalgia.org/
Sorry that you're dealing with this! I have to use a fan at night if it's flaring, no blanket on my feet, elevate feet and hands above heart, some people use cold water or ice but that can be very dangerous because if people over-ice themselves they can lose fingers and toes due to frostbite. Good luck hon!
Terri,
I had no idea about the burning from the Raynauld's and the joint pain in the hands as well??
My hands have always 'hurt' and I hate getting an IV in my hands. I had no idea this could be from my Raynauld's. I will bring this up with my Rheumie, I see him right before my surgery. Good information : ) Trisha
Tez_20 said:
Hello lambchop,
The sensations your getting of burning skin can be caused by the central nervous system...raynauds can causes these issues besides as they can be more Neuropathy symsptoms.
The links below may help you.
http://www.footvitals.com/nerves/neuropathy-in-feet.html
http://www.mcvitamins.com/Causes%20of%20Neuropathy/lupus-neuropathy...
As i get these symptoms and i have raynauds besides central nervous issues besides..reagrding your face and the malar rash (butterfly rash) that mainly keeps to the face but Roascea can cause this issue as my sister suffers with it and her face is pure red and these two links to slide shows may help you also, mainly the 2nd one.
http://www.webmd.com/skin-problems-and-treatments/ss/slideshow-comm...
http://www.medicinenet.com/image-collection/port_wine_stain_picture...
Diagnosis at times can be hard but in the meantime you have our full support.
Love Terri xxx
Hello Trisha,
Yes mate Raynauds can cause burning and your hands and joint to swell...that's why i'm messed up with cold weather besides heat and definitely see your rheumo about it...plus sometimes when you burn it gives off an itching sensation underneath the skin where you feel like your body is covered in miniture spikes trying to push through, if not that it makes your skin crawl like loads of ants have covered your body.
I've had all these issues since a kid and when it gets to my state there's no way of getting the right warmth to suite your body...it's a total nightmare.
I'm sitting here now dithering the rads are on 22 meaning the bungalow is in it's 80s, we had sleet this morning and apparently snow is due christ knows how i'm going to cope :)
I am having a simular problem, but only in my right hand, I get the tingling & numbness, then the burn comes, when the fingers are trying to get blood circulation back. The fingers on both hands feel real sensitive to hot and cold. Running warm water on them feels like the water is scolding hot. And I get pain when I use cold water. I work in a deli, so I am either going into a cooler or frezer on a daily basis, or my hands are in water a lot. Have started waring platex gloves, to help stop my fingers from peeling so much.
You all have helped me out a great deal. Now I have somewhere to go and express the issues and problems I am having. And to know I am not the only one that is learning to live with Lupus.
Thanks all.
This is such a helpful site. I do realize how much overlap all of these conditions have. Thank you all
I do also have EM. I diagnosed it myself on the internet. My Rhemy sent me to a hemotologist, because EM can be a precursor to myloproleferative disorders (bone marrow and blood disorders). I was hoping to get some answers to the EM from him. When I told him I had EM, he stated he wasnt familiar with it and then proceeded to check Wikapedia! He said, oh why don't you try taking aspirn. I told him to keep reading. Aspirn works for primary EM, this is secondary from UCTD. He said oh yeah ur right. Can't believe I had to pay a co-pay for that! Anyway, whoever does have EM, please know that EM and Small Fiber Nueropathy are usually seen together. I have all the symptoms of SFN, but two skin biopsies (2 years apart) came back negative. My pain dr, swears the tests are inconclusive, but the neurologists insist if it doenst come back positive, you don't have anything wrong with you....so sad.
Hello lamwiam,
Everything you've just explained there about hot and cold water i have identical and i'm glad your wearing gloves now because the water can affect our hands where deep cuts develope on the joints of the fingers and they do take some healing.
We do have a Raynauds group on the main page if you've not joined it.
Love Terri :)
Iamwiam said:
I am having a simular problem, but only in my right hand, I get the tingling & numbness, then the burn comes, when the fingers are trying to get blood circulation back. The fingers on both hands feel real sensitive to hot and cold. Running warm water on them feels like the water is scolding hot. And I get pain when I use cold water. I work in a deli, so I am either going into a cooler or frezer on a daily basis, or my hands are in water a lot. Have started waring platex gloves, to help stop my fingers from peeling so much.
You all have helped me out a great deal. Now I have somewhere to go and express the issues and problems I am having. And to know I am not the only one that is learning to live with Lupus.
Thanks all.
Hello lambchop,
As we all suffer daily it's all about recognizing your symptoms and what autoimmune disease is triggering them off to the best of your ability and also regarding flares....knowledge off these discussion's goes a large way with dealing with situations.
Terri :) xxx
lambchop0103 said:
This is such a helpful site. I do realize how much overlap all of these conditions have. Thank you all
Yep...I sure do. It is very bad right now...and it's Nov here in TN too...lol. Mine is not a permanent situation...it comes and goes...but when it is on...it itches and burns nastily! Sometimes cold compresses help for a bit...and sometimes one of the anti-itch creams...Benadryl...Cortizone...or one your doctor might give you help a bit. I get the rashes sometimes...and not other times. There is no figuring the oddities of this disorder. It does what it wants to...when it wants to...like a sulky and defiant child. You may be still in between diagnoses...and you may vary back and forth between being diagnosed...and then having them back up on that. I've experienced it all. There seems to be a great reluctance for Dr.s to say..."You have been definitely diagnosed with Lupus". I have heard it a time or two between my PCP and my Rheumatologist...and other times they avoid the word Lupus...and say things like...people with blood tests similar to yours have been helped by...and then they name lists of lupus meds...LOL. I don't care much what they say according to what may or may not be medically politically correct at any give time...as long as they DO what they should to help me combat the variety of symptoms and situations I find myself in....and as long as they direct me to sites such as this...where we all can share the oddities and annoyances and debilities of this freaky disease! Best of luck to you...keep reading and keep a notebook of your symptoms...when they come...when the dissapate. You may find that some of them are cyclic...and then at least you don't have to worry that this "new" symptom will be with you forever... PS...I've had Lupus for many many decades now...and am still alive...so we can live with it. Bless you.
i GET THE BURNING SKIN UNDERNEATH MY BREAST AREA, AND IT BURNS LIKE HELL. I DONT KNOW WHAT THE HELL CAUSES, BUT IT DOES BURN!!!!!
Hello Fighter,
You may find this link interesting mate regarding the burning skin with your breast. :)
http://www.localhealth.com/article/breast-burning-sensation
fighter said:
i GET THE BURNING SKIN UNDERNEATH MY BREAST AREA, AND IT BURNS LIKE HELL. I DONT KNOW WHAT THE HELL CAUSES, BUT IT DOES BURN!!!!!