Burning Skin Sensations

[IrishHeart]

There's one major symptom I have that I have not been able to find a discussion of on here.

I feel like I am on fire. Like I have a sunburn. All the time. Everywhere. Even my tongue burns. My throat burns sometimes. I can't even tolerate club soda.(It is not a yeast issue. I was tested.)It is horrible. Keeps me awake and makes my life miserable. It has been with me since Feb. 2008. Tried neurontin, tramadol, xanax, amitryptiline, but they did nothing but make me feel SICK and cause C --which alternated with D--- as I lost 90 lbs. and got sicker and sicker.

No doctor has been able to tell me what it is. The PT tells me it is nerve compression from inflammation. She believes it will resolve after my gut is healed. Another PT and a naturopath told me it is lactic acid built up in my muscles from a leaky gut. Two neurologists had no answers. Rheumatologists were no help. My blood work for anything like RA or lupus is consistently NEG. NO lyme's etc. I am great "on paper".

I thought it was a B-12 issue.

My B-12 was high...but someone told me that just because the level is high on blood panels doesn't mean it is being absorbed. So, I could still be low. I don't get that part. What good are blood tests to see levels of vitamins, etc. if they are not reliable?

ANY ideas? Anyone else have this? Appreciate your thoughts!!

[ravenwoodglass]

When you say your B12 is high what is it? Is it above 1000? Are you supplementing B12 sublingually? Are you taking a multi with folate? Folate can make the B12 reading higher than it really is.

[jerseyangel]

There's one major symptom I have that I have not been able to find a discussion of on here.

I feel like I am on fire. Like I have a sunburn. All the time. Everywhere. Even my tongue burns. My throat burns sometimes.

I used to have this. Before going gluten-free, I had feelings of burning on the soles of my feet, on my face, and the inside of my mouth. If I felt the skin on my face it felt like I had a high fever but I didn't. It was awful. I would sometimes drink ice water and hold some in my mouth for as long as I could to get a little temporary relief.

It did subside finally after I was gluten-free for a while.

[IrishHeart]

When you say your B12 is high what is it? Is it above 1000? Are you supplementing B12 sublingually? Are you taking a multi with folate? Folate can make the B12 reading higher than it really is.

That's a good point!

Come to think of it, I WAS taking a folate supplement from a rheumatologist when the B-12 was first tested and it read >2000. The doctor told me to cut back to a few times a week. The next reading--8 months later-- was 856 and I was no longer taking the folate. Who knows what level it really is...yes, it is sublingual. 1000mcg.

Next month, he will test me again. We'll see what it is.

Is B-12 the only thing that can cause burning? My B-6 was high too.

[IrishHeart]

I used to have this. Before going gluten-free, I had feelings of burning on the soles of my feet, on my face, and the inside of my mouth. If I felt the skin on my face it felt like I had a high fever but I didn't. It was awful. I would sometimes drink ice water and hold some in my mouth for as long as I could to get a little temporary relief.

It did subside finally after I was gluten-free for a while.

This makes me feel better! Thanks!!

[cassP]

sounds like nerve pain... which could involve your B12.. idk

the only time i had burning was on my forearms (where i sometimes have DH)- i had a few BURN eruptions while on Synthroid & Cytomel... since i switched to Armour- i have not had it.

hope yours calms down soon!

[suziq0805]

There's one major symptom I have that I have not been able to find a discussion of on here.

I feel like I am on fire. Like I have a sunburn. All the time. Everywhere. Even my tongue burns. My throat burns sometimes. I can't even tolerate club soda.(It is not a yeast issue. I was tested.)It is horrible. Keeps me awake and makes my life miserable. It has been with me since Feb. 2008. Tried neurontin, tramadol, xanax, amitryptiline, but they did nothing but make me feel SICK and cause C --which alternated with D--- as I lost 90 lbs. and got sicker and sicker.

No doctor has been able to tell me what it is. The PT tells me it is nerve compression from inflammation. She believes it will resolve after my gut is healed. Another PT and a naturopath told me it is lactic acid built up in my muscles from a leaky gut. Two neurologists had no answers. Rheumatologists were no help. My blood work for anything like RA or lupus is consistently NEG. NO lyme's etc. I am great "on paper".

I thought it was a B-12 issue.

My B-12 was high...but someone told me that just because the level is high on blood panels doesn't mean it is being absorbed. So, I could still be low. I don't get that part. What good are blood tests to see levels of vitamins, etc. if they are not reliable?

ANY ideas? Anyone else have this? Appreciate your thoughts!!

I don't have this, but did go through a period of chronic pain. While researching what the doctors thought I had, I did hear about something called Complex Regional Pain Syndrome. Not sure if this matches what you are experiencing but webmd.com has a bit of info on it.

[IrishHeart]

cass, suziQ

Thanks for your thoughts. It is perplexing--and difficult to live with, yet I keep hoping it will alleviate some as I heal up. It came on when everything else did, so I am guessing it is just part of the celiac picture. I did read where burning including burning of the face, hands and tongue are associated with this.

The chronic pain even stumps the physiatrist.

[IrishHeart]

I don't have this, but did go through a period of chronic pain. While researching what the doctors thought I had, I did hear about something called Complex Regional Pain Syndrome. Not sure if this matches what you are experiencing but webmd.com has a bit of info on it.

just curious...you say you did go through a period of chronic pain...meaning it has resolved?? that's great!!

I did read about CRPS too, by the way. I will ask the doctor. Thanks!!

[suziq0805]

just curious...you say you did go through a period of chronic pain...meaning it has resolved?? that's great!!

I did read about CRPS too, by the way. I will ask the doctor. Thanks!!

I am not diagnosed with celiac. My infant son may have it and I just got tested (as I do have a few symptoms of it), but my bloodwork was negative for celiac. The pain I dealt with improved greatly after about a year of physical therapy. My physical therapist said that my hips/abs were just so weak that it was throwing my upper body out of whack and causing compression and a bunch of the other symptoms I was having. Right now we're just waiting awhile to reintroduce wheat/gluten to my son and see if he still reacts to it and if so then we'll redo the allergy testing and discuss celiac further. If it looks like celiac is what's causing him to be sick after eating gluten then I'll push into further testing for myself. I hope your pain improves!

[IrishHeart]

I am not diagnosed with celiac. My infant son may have it and I just got tested (as I do have a few symptoms of it), but my bloodwork was negative for celiac. The pain I dealt with improved greatly after about a year of physical therapy. My physical therapist said that my hips/abs were just so weak that it was throwing my upper body out of whack and causing compression and a bunch of the other symptoms I was having. Right now we're just waiting awhile to reintroduce wheat/gluten to my son and see if he still reacts to it and if so then we'll redo the allergy testing and discuss celiac further. If it looks like celiac is what's causing him to be sick after eating gluten then I'll push into further testing for myself. I hope your pain improves!

My blood work was NEG too. My doctor said NEG blood work happens too frequently and that all my symptoms are enough for him. Me, too! I refuse to eat gluten to have a biopsy. No way--I cannot be that spacey- headed or sick on a daily basis ever again! THAT is very scary.

I have the exact same thing. Weak hip/abs/legs (post hyster) and awful pelvic pain. I can hardly sit/lie down comfortably. My PT said the SAME thing!! Compression and weakness and nerve entrapment. The pelvic area throws off the rest of the spine, neck. I have horrific neck/jaw pain. My back kills me. No chiro, PT, acupuncture has ever helped. It's a big cascade, obviously. I continue with PT, but my muscles are so weak and I lost so much muscle mass and tone to being ill with this disease.

I hope your son feels better soon! I hope you get answers. Thanks for your thoughts.

[suziq0805]

My blood work was NEG too. My doctor said NEG blood work happens too frequently and that all my symptoms are enough for him. Me, too! I refuse to eat gluten to have a biopsy. No way--I cannot be that spacey- headed or sick on a daily basis ever again! THAT is very scary.

I have the exact same thing. Weak hip/abs/legs (post hyster) and awful pelvic pain. I can hardly sit/lie down comfortably. My PT said the SAME thing!! Compression and weakness and nerve entrapment. The pelvic area throws off the rest of the spine, neck. I have horrific neck/jaw pain. My back kills me. No chiro, PT, acupuncture has ever helped. It's a big cascade, obviously. I continue with PT, but my muscles are so weak and I lost so much muscle mass and tone to being ill with this disease.

I hope your son feels better soon! I hope you get answers. Thanks for your thoughts.

That's really interesting to know that your experience is so similar to mine. I had muscle pain/weakness/tightness in both arms up through my shoulders, constantly tight muscles in my neck and upper back, headaches, jaw pain, this weird pressure/throbbing in my ears, burning pain in my armpits, occassional tingling in my pinky and ring fingers, occassional elbow and wrist pain and knee pain. I am a music teacher and all these things began in college while I was spending a lot of time on the computer doing homework and hours and hours practicing flute and piano. So my diagnosis of an overuse injury combined with the fact that I was in a car accident and received bad whiplash did kinda make sense, but yet I did wonder what was up when my pain "spread" from just the wrist area to more and more of my body. It was to the point where my arms were so weak it was difficult to make it through conducting a rehearsal with my students because my arms felt so heavy to hold up to conduct. But physical therapy did help. I'm not 100%, but I can function pretty normally during the day. I've also limited my music activities to avoid aggravating things because I do notice that when I've used those muscles a lot my symptoms do get worse. So I guess we'll see what happens over the next few months. Makes me curious to try a gluten-free diet, but yet I know I shouldn't in case I need a biopsy. I guess we'll see what the next few months bring.

[IrishHeart]

OMG SUZI Q!!

Your pain "spread" sounds just like mine! I also had a bad car accident/whiplash YEARS ago and it's been a steady progression. Both shoulders had surgeries--temporarily relieved the pain. PT, chiro, massages, kept the pain "controlled," but eventually, my hips, knees etc. were involved and finally, in Dec. 2007, after a bout with sciatica, even my BUTTOCKS hurt and I could not sit comfortably. It just morphed from there...even trying to rest my head on a pillow hurts. I am not kidding. I have pain in my jaw. It's absurdly painful and no one has been able to help me. Right now, I can hardly use my arms without pain. Weak, burning, just ridiculous. No stamina.Legs are the same. I just keep pushing. Not one day in bed; I refuse to give in.

I exercise, stretch and try to regain strength. Yet, I am told that the pelvic pain is the hardest to resolve. My SI joints are finally staying in place. Hooray! My coccyx is almost where it should be. I have 2 PTs working on me--one even does "inner" trigger point and fascia release. It's ugly, but I have no choice. Otherwise, I will be in agony for the rest of my life and THAT is NOT an option!

I definitely think there is a link to celiac because muscle and joint pain is often an accompanying issue and this certainly bloomed out of control with the acceleration of the disease. And trigger points are often resistant to resolving when the body is not well. So, I am HOPING the PT etc, will go easier as I heal.

Others on here have told me they have NO pain when before going gluten-free, they were nearly disabled and unable to walk. Amazing.

I sincerely wish you well and I hope that both you and your son get answers and feel better soon!