constant sore throats and ulcers / sores

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Wackers34
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Date Joined Apr 2013
Total Posts : 694
   Posted 3/23/2014 11:52 AM (GMT -7)   
Hi all

I have posted about this before and I hope to get to the bottom of it, but i have constant sore throats / ulcers and sores in my mouth and throat...they go on months, no matter how much or little sleep i get...when it happens my fatigue is worse also...

Where my soft palate arch meets my tongue it have little spots / pimples which are so sore...i thought it was an ulcer, but its not white...The dentist is keeping an eye on me

It makes me miserable...what could be causing it? Breathing air makes it burn and I have two red bits on the arch of my soft palette at back

My theory is one of the following - Reflux, Meds, Candida, Glandular Fever, (dont have fever though) allergy, stress, or cancer!!!

I mean the fact this goes on months at a time, it did sort of clear up once and then came back..all my glands come up also under my chin and behind my ear, and i get spots on them...

Does this sound familiar? Any advice?

Jasmine Grace
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Date Joined Jun 2013
Total Posts : 815
   Posted 3/23/2014 2:19 PM (GMT -7)   
Wackers, I get this as part of my Celiac...
Let me stress to you again, if your sister has Celiac, DEMAND to be tested again very thoroughly, with TTG and checking for IgA deficiency.
Age: 19
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, allergies, atopic dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

Wackers34
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Date Joined Apr 2013
Total Posts : 694
   Posted 3/24/2014 11:43 AM (GMT -7)   
My doc is refusing to do any more tests on me...She has been really good up until now. I might have t find another doc and start from the beginning...or perhaps try a gluten free diet and see if this helps - like you said on other page! Are you sure its coeliac issue with you and not CFS?

Thanks - ahhhhh its so nice to have you back :o)

Wackers34
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Date Joined Apr 2013
Total Posts : 694
   Posted 3/24/2014 11:58 AM (GMT -7)   
Jasmine - i have ordered a hair analysis test - it tests for 114 food allergies also as well as nutrient deficiencies and toxins - thanks for info on this

xx
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Jasmine Grace
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Date Joined Jun 2013
Total Posts : 815
   Posted 3/24/2014 4:15 PM (GMT -7)   
Hi Wackers, I've never had the tongue problem until last week, to be honest. I asked the doctor what was causing it and he was sure that because I've been following a gluten free diet, when I had some gluten earlier that day, that was what triggered it. But when I started to notice that my tongue was on fire was when I was eating a gluten free (supposedly - it was ordered from a pizza place) pizza with bacon, pineapple, mushroom and cheese.

I asked the doctor how likely it was that I've developed a new allergy or a new reaction to gluten - and he said it was very unlikely, but possible. So I'm actually in a bit of doubt myself... I've had acid reflux for a few years (and celiac for longer) and I've never had this as one of my symptoms before. I'm not on any new medications.

Maybe (for me, anyway) it is Candida. I do have thrush on the back of my tongue as well... I'm not particularly stressed at the moment... It could be part of CFS... I hope neither of us have cancer!

I hope the hair analysis provides you with some answers :)
Age: 19
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, allergies, atopic dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 3/25/2014 5:54 AM (GMT -7)   
Hi Jasmine - i have gone gluten free as of today...i actually dont eat a lot anyway, but always had cereal with it in so avoided that this morning - so we shall see

My sore tongue is really bad today - its on the bit at the back, near the side where it meets the gum, its so sore in there and i have some sort of ulcers or spots in there, raised pappillae at back of tongue and a bit of white also, i got tested for candida and doc said wasnt sure it was that...
What the hell is it then!!! Its my worse symptom at moment, the fatigue and these mouth problems - it hurts when i speak and all my lymph nodes are swollen

I thought about the C word, it set off some health anxiety in me, so i got the dentist to have a look, he didnt suspect the c word but told me to come back next week (this was 2 weeks agO) to recheck it - he is far better than the doc...he said he will refer me to ENT if it continues to be painful and suspicious...

The only otther thing i can think of, is allergy or reaction to supplements? i am on a lot...i wonder if any of these can cause sore mouth / tongue / throat?...perhaps i should stop everything!!

How do you sleep at moment? Is it still fitfully? I sometimes sleep great like 7- 8 hrs with one interruption and then others like last night, 3 -4 hours waking every hour!!!

I hope we get to the bottom of this problem
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 3/25/2014 7:05 AM (GMT -7)   
Hi Wackers,

Watch out for traces of gluten in pre-made foods! It hides everywhere...

I've been eating gluten-free lactose-free custard which is helping to soothe my tongue. Putting Bonjela (mouth ulcer gel) on my tongue helps too. My tongue is a lot better but still not quite right. I have been strictly gluten free since I first noticed the burning sensation.

You may find these pages interesting:
http://www.celiac.com/gluten-free/topic/17989-burning-tongue-mouth-sores/
http://www.glutenfreesociety.org/gluten-free-society-blog/gluten-intolerance-linked-to-canker-sores/

Be careful about stopping all your medications, as this may cause withdrawal symptoms (e.g. migraines). Maybe it is caused by the medications or supplements... But consult with your doctor about stopping anything.

At least your dentist will get onto it if it is anything to worry about. I really hope not! C makes fibromyalgia not seem such a bad differential diagnosis, huh?

You couldn't have described my sleep better. It tends to be only 2-3 hours or else 6-10 hours (interrupted, but deep enough). It's never just 4 or 5 hours though... Or else it's light slumber the whole way through and i never really sleep at all... So I have good days, terrible days and mediocre days thanks to my sleeping being all over the place.

A few weeks ago, I went a whole week without being able to sleep, and did a lot of physical activity... Then rested for a day... Then I slept for 10 hours, woke up and had a shower, then slept for another 9 hours. Crazy

Post Edited (Jasmine Grace) : 3/25/2014 8:09:29 AM (GMT-6)


Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 3/25/2014 8:46 AM (GMT -7)   
one more thing Jasmine - whilst i have you here -

As well as sore tongue, do you get red sore arches at back of your soft palette and also little white frothy bits? Perhaps that is reflux? Im not sure...

Are you on anything for reflux? - perhaps thats whats causing my probs...who knows

I meant stopping supplements, not meds...im only on 1 med, amitriptyline 25mg

Thanks
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 3/25/2014 8:53 AM (GMT -7)   
found this info about white frothy saliva

Digestive Problems

Chronic acid reflux and gastroesophageal reflux disease sometimes also cause saliva changes. Opaque, white spit is most common as a person is digesting a meal that has irritated the digestive tract, and often carries a distinctive acidic taste. If it becomes too acidic, a person might even begin developing sores on the lips, tongue, or inner mouth.

Other Overarching Conditions

Saliva changes may be a side effect or symptom of something much larger, like organ trouble, systemic diseases, or autoimmune conditions. Sarcoidosis, a lung disease that affects the lymph nodes and other tissues, sometimes causes the oral glands to secrete frothy mucus; people suffering from lupus or rheumatoid arthritis may have similar symptoms. When a person suffers from sarcoidosis as well as an additional connective tissue disorder the condition is known Sjogren's syndrome, and dry mouth is an established side effect of this condition. In these cases changes in spit are usually some of a patient’s more minor concerns, but they still serve as a sign that something is wrong elsewhere.

Interesting bit about Acid reflux, causing sore tongue etc...perhaps this is what I have!!
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 3/25/2014 2:27 PM (GMT -7)   
You know, I do have acid reflux, and I was on medication for it for about a year, but then I went off them again because I thought I had it under control by diet and de-stressing. I got shooting pains in my chest and mouth ulcers from it, but I've never had this tongue thing before. The back of my soft palate is certainly more sore than the rest of my mouth... I can't see that it's very red, but I'm having trouble seeing back there! Yes I do get the white frothy coating on my tongue that I can scrape off, but only since last Wednesday when the burning tongue started. I did get a chest pain again last night, like what I used to get with acid reflux. Maybe I should go back on the meds... It's just I was trying to cut down on how many medications I take - I hate being a walking pharmacy!

Autoimmune disease.... My ANA has been kind of high in the past, and one of the blood tests I'm going to have soon will test my ANA levels again. If they're higher than before... Well, I guess I'll have to get further testing for autoimmune diseases.

I have had dry mouth for most of the time that I've had fibromyalgia and CFS.

A day before my tongue symptoms started, it felt like a volcano erupted in my belly. Intense nausea, worse than I've ever had, which lasted for 4 days and nights nonstop. All I could eat was gluten free toast with a bit of butter to help soften it for the sake of my sore tongue. My stomach only felt like rice crackers, but my tongue couldn't bear that. My tongue felt like custard, but my stomach couldn't bear that till the fifth day! My flat mates were anxious for me to eat healthier, but I'm telling you, I just couldn't, not during those 4 days! Maybe it is acid reflux, aha...

Now what did I eat last Tuesday that was naughty? Oh, I know - take away (probably deep fried) hot potato chips AND Pringles. Note to self: the only chips allowed are Fit Chips! Fit Chips are gluten free, fat free and delicious, and never cause me any problems. But I've never had such a drastic long-lasting reflux reaction before!
Age: 19
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, allergies, atopic dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

LadyOSteele
New Member


Date Joined Jun 2014
Total Posts : 6
   Posted 6/1/2014 8:25 AM (GMT -7)   
One hyphenated word: L-glutamine. Break open two capsules and swish it in your mouth three times daily. Swallow.

I wanted to reply here about tongue ulcers. I had three ulcers come and go over three months that were DEBILITATING. It was very painful to swallow, eat and talk. I saw an oral surgeon who performed a biopsy, have had a ton of blood work drawn, got two second opinions, ruled out infectious diseases (fungal, viral, parasitic) with an infectious diseases expert, and am now in the hands of a GI doc.

I can provide photos of these tongue ulcers. They are no fun. What healed me up quick, though, was swishing L-glutamine in my mouth. I mean, "less than 24 hours almost completely gone" quick. I cannot recommend this enough! The prescription mouth wash was only helpful for about 20 minutes.

Malabsorption has been confirmed by stool samples and blood work shows a deficiency in fat-soluble vitamins. I'm on the docket for an endoscopy and colonoscopy to determine what type of IBD I have. But, tongue ulcers, fatigue and skin rashes were my first symptoms of something out of whack. Good luck!
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