Anybody have any suggestions for a tongue that feels like its burning and scraped raw?? So help me, if I could rip out my tongue I would. The burning sensation seems to be coming from the sides of my tongue, and the rawness (is that a word??) feels like the top (not tip) of my tongue. I'm sick of all of this. I have autoimmune disease, but its this fibro that is making me feel like my life is not worth living anymore! So much for the idiots who say this isn't a "real" disease.
Thanks for a listening ear :-)
-rosie
Quick Update:
The tongue is still burning a bit, but not quite as bad. Turned out I had both a sinus and ear infection. I wonder if the infection had anything to do with the burning and raw feelings. Thank you, everyone, for your inputs! I'll try some of the recommendations to get some relief.
I do see a white coating from time to time. It comes and goes. How do I make these symptoms go away?? Not to mention I'm coming down with either a cold or sinus infection. I wish I could remove my whole head!
I had tongue/lip tingling for 5 months earlier this year, along with a million other Fibro symptoms.
January-June were 6 months from hell head to toe, including the tongue issue. Then everything went away.
Worst bout of Fibro ever, and the first that included the tongue issue. Various Doctors could not find anything,
and quickly dismissed any tongue issues. Obviously you should see the Dr. to make sure it isn't thrush or anything else, but if they find nothing, it is likely a Fibro symptom like all other crazy Fibro symptoms that will eventually disappear.
Please don't feel bad as you are not alone in your pain. This is why we belong here . I would go nuts if I did not have a place to vent. A place to know I'm not the only one with pain in areas. I'm having problems with my mouth, it is dry and sides feel like they have been scraped . And the top of my tongue is coated. My mouth feel gross . I just have ice water handy all the time and use these breath mints. It helps some. The stuff you buy for this leaves a terrible taste in my mouth. So scratch that idea , ok. Save yourself a few bucks. If you find a feel better way let me know , please, Feel better.
I have Sjogren's Syndrome, and sometimes my tongue feels this way. I am not sure that this may be the cause of yours, but here is some info, be sure to talk to your Doctor, there is a blood test, though you may need to be tested more than once, it can be elusive!
Please don't give up, there are good meds for many autoimmune, and for fibro, life is good regardless of our struggles, and I hope that you can get some answers and some meds that will make your life better. I do understand the frustration, believe me!
That's how I think, Michael, has worked for the past 25 years...pain anywhere, feeling like burning up, freezing cold, numbness, spasms...so far, all fibro.
Tinnitus, though,...never goes, just started 23 years into disorder.
Thanks SK for the link. I went on there and read a bit. My rheumy dismisses my tongue issues. I have NO confidence in my current dentist. (i just use him for routine cleaning). Is there some specialty dentist I should see to help me figure out what's going on with my tongue?
Yes, I've been dealing with the same thing for a year. My Dr diagnosed it as thrush and gave me an anti-fungal (very disgusting) It works, but I have to keep repeating it- it has yet to keep it away.
I've found some foods make it worse- salty, spicy are the worse, when it's bad anything flavored or hard is bad.
Each symptom on it's own is bad enough, but when you add them all up, it can get very overwhelming. Then add the frustration of other people's reactions/questions and it's beyond bad.
My advice (beyond ignoring people's opinions) is distraction. Have hobbies -plural because you can't always do one thing because of pain, so if there's something you can do when your back hurts, then something you can do when your legs hurt, etc.
I try to accomplish at least one thing every day. Some days that one thing is taking a shower, or even just getting dressed, but I never let myself feel guilty about watching tv or reading all day if I've turned on the dishwasher.
Yes I know all about thrush. I use a puffer and if you don't rinse your mouth well after each use you get thrush. Using a puffer is not my idea of fun. I use it only when necessary.
As I know it, most Dentists can do a tongue biopsy, but that is quite unpleasant, I think I would ask the Rheum to do another blood test, or ask your General Practioner, he may be more helpful there.
Hi,
I had this and my doctor recommended probiotics. It’s a capsule you open then empty on your tongue then swish and swallow. Fibro can be related to yeast and probiotics work. If your tongue has a white coating it may be yeast.
Elizabeth
Funny you should mention warm salt water rinse for your mouth. My mother use to give me warm salt water to drink when I had a tummy ache. The purpose was to get me to throw up. After which you feel better. Ever had an infected finger and soaked it in salt water. Can save a trip to emergency. I must try this warm salt water rinse as I have a dry mouth and slimy feeling. I did buy the oral stuff but it leaves a horrible taste in your mouth. I also find it rather slimy. So I do hope this saves someone an added expense for a fix that doesn't work.
Oh my goodness, I have never heard of nor have I experienced a burning raw feeling tongue! That would be awful to live with. Have you told your doctor about it?
I hope they can diagnose it for you and find some kind of treatment for it.
