Trigeminal Neuralgia and Burning Mouth Syndrome in Fibromyalgia and Autoimmune Disease

by Annesse on May 7, 2013

Nerve PictureAs part of my mother’s diagnosis of chronic fatigue syndrome, fibromyalgia and lupus, she had many strange and painful symptoms that she did not understand and she had a strong desire to know what was causing them. This post comes directly from the question of a fibromyalgia sufferer that wanted to know about some of the most painful symptoms she was experiencing. ~Kristin

The sensory nerve damage in both fibromyalgia and autoimmune disease is due to an inability to properly metabolize vitamin B12.

Vitamin B12 maintains the myelin sheath. The myelin sheath protects the nerves of the spinal cord. The inability to properly metabolize vitamin B12 is due to missing digestive enzymes called protease. These enzymes can be replaced through diet.

It will not help to take supplemental vitamin B12. Without these enzymes, it will not be able to cross the blood-brain barrier and the myelin sheath will continue to deteriorate.

Damage to the sensory nerves can lead to a painful condition called trigeminal neuralgia.

Trigeminal neuralgia affects the trigeminal nerve, one of the largest nerves in the head. The trigeminal nerve is responsible for sensing touch, pain, and temperature in the jaw, gums, forehead, and around the eye area. Trigeminal neuralgia is characterized by very pain-
ful, sudden, electric-like spasms in parts of the face. The pain is usually only on one side of the face, often around the eye, cheek, and lower part of the face. It can be triggered by touch, chewing, shaving, or even a light breeze.

Trigeminal nerve damage can also lead to another painful condition called burning mouth syndrome, as the following study confirms. Burning mouth syndrome is often described as a scalding sensation in the tongue, lips, palate, or throughout the mouth.

Trigeminal small-fiber sensory neuropathy causes burning mouth syndrome.
Lauria, G., A. Majorana, M. Borgna, R. Lombardi, P. Penza, A. Padovani, P. Sapelli. 2005. Pain 115(3):332-7.

“Our study demonstrates that burning mouth syndrome is caused by a trigeminal small-fiber sensory neuropathy and that superficial biopsy of the tongue can be helpful in assessing the diagnosis. These findings shed light into the pathogenesis of this common disorder and could contribute to evaluate targeted therapies in patients.”

 

Summary

  • The sensory nerve damage in both fibromyalgia and autoimmune disease is due to an inability to properly metabolize vitamin B12.
  • Vitamin B12 maintains the myelin sheath.
  • The myelin sheath protects the nerves of the spinal cord.
  • The inability to properly metabolize vitamin B12 is due to missing digestive enzymes called protease.
  • These enzymes can be replaced through diet.
  • It will not help to take supplemental vitamin B12.
  • Without these enzymes, it will not be able to cross the blood-brain barrier and the myelin sheath will continue to deteriorate.

 

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{ 11 comments… read them below or add one }

Pamela Carter June 7, 2013 at 3:53 pm

Please send this article to my e-mail address. I am unable to print or send it to my documents. I need to take this article to my doctor. Please . Trigeminal Neuralgia and burning mouth syndrome in Fibromyalgia and
Autoimmune Disease is the title of the article. Nature Had it First is on the top of the page. I think I have put in the website correctly. Help! I need this article.

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NHIF Admin June 8, 2013 at 3:33 am

Will do thanks Pamela!

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sunnyj June 9, 2013 at 5:35 pm

I have experienced a sore tongue for a couple of years and have never had any clue as to what to do. I have suffered from FMS symptoms for almost 30 years, but this was a more recent symptom. I have treated it as if it were a fungus, but nystatin doesn’t touch it. I’d love to know how Annesse is doing with this particular issue, and if there was anything specifically to help my tongue…..aside from all the diet changes/additions you have spelled out in your books? By the way, I love your new book on FMS.

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NHIF Admin June 19, 2013 at 9:01 am

In addition to damage to the trigeminal nerve, which can lead to burning mouth syndrome, a sore mouth and tongue can also result from an accumulation of large abnormally formed red blood cells. Following is a quote from the autoimmune book.

“A vitamin B12 deficiency can also lead to the sore mouth and tongue
often associated with Sjögren’s. It is periodically accompanied by a bitter
or metallic taste (Cigna, 2010). B12 deficiency impairs DNA synthesis,
which affects all proliferating cells. Without B12, developing cells in the
bone marrow cannot divide normally to form mature red blood cells.
Instead, they become unusually large and misshapen, and most never leave
the bone marrow. A similar accumulation of large abnormal cells lining the
digestive tract can cause a sore mouth and tongue.”

I no longer experience a burning mouth or sore tongue. It is one more symptom that should resolve completely by
properly restoring your B12 levels though replacement of protease, healing the GI tract, and consuming foods that contain lots of vitamin B12.

You could try holding some strong cold-brewed chamomile tea in your mouth to help cope with this symptom in the meantime. Chamomile has strong soothing and anti-inflammatory properties.
I am so glad you are enjoying the fibromyalgia book!
Best Wishes,
Annesse

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Dee November 24, 2013 at 1:40 pm

Hello Annesse,

I have suffered with fibro for 30 yrs now without any mouth problems….up until i had a glutathione nebulizer treatment. Could the pressure from the nebulizer cause such a thing….my mouth was bright red as if irritated and continued until it turned slight white…..that was 4 weeks ago….the pain has improved but the bitter taste and dry mouth is 24/7. Something happened that day but no dr has any explanation for it as this is a very safe procedure…..was i predisposed due to thin skin in my mouth and can you damage nerves that easily? My mouth is dry, bitter and burns….i am on no meds and do not have thrush. I take saliva supplements when it is really dry but it is the constant bitter even with saliva that is making me sick. Any thoughts?

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NHIF Admin November 25, 2013 at 2:25 pm

I think the reaction you experienced could possibly be due to sulfite formation. You may have a sensitivity to sulfites.
http://www.atsjournals.org/doi/full/10.1164/ajrccm.156.2.9611001#.UpKoM73Tljo

Of course, anytime you experience an allergic reaction the immune system releases proinflammatory cytokines that can lead to tissue damage. One of the inflammatory cytokines released is tumor necrosis factor. Tumor necrosis factor is already elevated in patients with fibromyalgia. Here is a study that shows the release of tumor necrosis factor is linked to changes in the taste buds.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0043140

If you think this may possibly be what happened, let me know and we can talk about some ways to lower tumor necrosis factor.

Take Care,
Annesse

Reply

Dee November 28, 2013 at 5:41 pm

Hi Annesse,

Thanks so much for sending me the information regarding this issue……i am so very stressed from the constant bitter taste and slight burning. It is late where we are so I will take a look at both articles tomorrow. I am very curious to see if this is indeed what has happened….part of my mental suffering is that I am blaming myself for doing the procedure… I never do anything like this…..i wasnt even that toxic and could have waited on treatment. I know you cant turn back time but I am stressing so much about this and cant imagine suffering like this for the rest of my life….im only 55.

Dee.

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Dee December 2, 2013 at 7:25 pm

Hello Annesse,

I dont believe it was a sulfite sensitivity….did not have the typical reaction in lungs that someone with asthma would have with this type of treatment.

I am very onterested in communicating with you regarding the latter….the tumor necrosis factor. How should we go about this?

D.

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Dee December 9, 2013 at 8:33 pm

Hi Annesse…..wondering if you are still interested in explaining or helping with the TNF?

Dee.

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gwen December 22, 2013 at 8:46 pm

I’ve had burning tongue for two years and have seen numerous doctors along with spending a ton of money having all metal removed from my teeth. I’ve had.blood work and am wondering, is it possible to be b12 but it doesn’t show in blood tests?

Reply

NHIF Admin December 22, 2013 at 9:00 pm

Hi Gwen,

Really good question. They may not have checked B12 and B12 can be artificially elevated if someone is on supplements but they may still not be able to metabolize it properly. It may not be entering the cells. My mom is posting some great information on B12 on our facebook page and please feel free to post any questions you have there too! Here is the link https://www.facebook.com/Autoimmunethecauseandthecure

Have a good night! Kristin

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