Burning Mouth Syndrome From Sjogrens

[Debbweb01]

Hi I’ve been on this post a while ago! Unfortunately life has not gone me the time to post! Taking care of my husband with Alzheimer’s for 2&1/2 years! Have him in facility for a bit! Unfortunately my health went down the tubes! I developed Burning mouth Syndrome! They say only 20,000 cases in USA! Seems to be rare! After five months of suffering and after 3 docs, I went to my ENT ( ear, nose, n throat she found me help! Some kind of paste and since I had 6 stomach operations I wasn’t absorbing Vitamin B12! So with the paste and B12 shots every month, & Vitamin D I’m better! Just wanted to let y’all know if anyone has this from Sjogrens there is help and u can ask me and maybe I can help! I also have APS(sticky Blood), & Rheumatoid Arthritis! Give myself Lovenox shots everyday for past 2 years! I was taken off Plaquinil by my ENT! Rheumatologist put me on it and it never worked! ENT said it was probably making my BMS worse! If I can help anyone please feel free to ask! Godspeed!!! Thank You for all your past help!!!

[Tally]

Thank you so much for your kindness in this post as I was told in Qld Burning Mouth Syndrome was so rare it was impossible to ascertain how to treat. It was unbelievable in pain and thank you again for sharing. I hope you are able to take care of you as you look afteryour husband <3

[Debbweb01 in reply to Tally]

Do u still have it??? If u do I’ll give u name of paste I took! I see it’s rare cause ur only one who answered me! Thanks hope I can help someone! If I help one person it’s so worth it! God Bless You

[Tally in reply to Debbweb01]

I would love to know the name of the paste as I was left with nothing to use when the flare happened and pain was awful. Thank you for caring and bless you too. Xxxxxxoo

[Debbweb01 in reply to Tally]

TRIAMCINOLONE ACETONIDE DENTAL PASTE USP, 0.1% Also please get Vitamin B12 shots every month or it won’t work! I also had lidocaine in between to numb the area so I cud eat! Stay away from salty and tomato sauce and any foods that exasperates the condition! Good Luck and Godspeed

[Debbweb01 in reply to Tally]

Yes unfortunately it’s very very rare! Only 20,000 cases in USA! I suffered 5 months b4 I got relief! I hope u can get the paste! It helps! Also as a relief till it kicks in ask ur dentist for lidocaine or Magic Swizzle it’s a compound that has lidocaine and malice mixed in and it give u temporary relief so u can enjoy ur food! With Sjogrens I also have trouble swallowing! I hope I was able to help out!

[Tally in reply to Debbweb01]

Thank you so very much xxx

[Debbweb01 in reply to Tally]

If u can’t get the paste please let me know and we can go private ok?

[rosserk in reply to Tally]

Hi have you tried xylimelts? They are tablets you stick to your gums to stimulate saliva they are brilliant for dry mouth caused by sjogrens. You can also buy Xylitol, you put a tiny pinch in water and when you drink it, it stimulates saliva.

Xylitol is actually good for your teeth it prevents demineralisation by inhibiting bacteria and stops the pH from dropping. It is found in many sugar–free gums and mints used to stimulate saliva, saliva contains minerals which in turn remineralise teeth.

If you have sjogrens your mouth is burning due to the lack of saliva it will heal pretty quickly if you use xylimelts and xylitol.

[Debbweb01 in reply to rosserk]

Thank you so very much for your advice! I shall look into it hear in USA! I’m sure ur advice will help others too! Thanks again! It’s so greatly appreciated! Godspeed

[rosserk in reply to Debbweb01]

You’re welcome but I just followed your lead!

I’m looking after my mum who has dementia and it’s extremely difficult particularly with the exhaustion Sjögren’s can cause.

I forgot to mention it’s really important to take VitD + k2. The spray under the tongue is the best one and also fish oil. Yuck 🤢

Kindest regards 😁

[Debbweb01 in reply to rosserk]

I hope u read my post with name of dental paste that practically cured me! Please update me on your progress!

[Spice]

Thank you for your post. I to suffer from a burning mouth and my Dr has tried to help but so far no luck. I have SS Throid and gastric problems. What is the name of the paste. It would be lovely to have some relief.

[Debbweb01 in reply to Spice]

TRIAMCINALONE ACETONIDE DENTAL PASTEUSP,0.1%

[Debbweb01 in reply to Debbweb01]

Also please get Vitamin B12 shots monthly or it will come back! Try to stay away from foods like salt and tomato sauces or anything that aggravates the condition!

[Spice in reply to Debbweb01]

Thank you so much. The Dr reckons my B12 and Iron levels are ok but I have taken steps to up the other B vitamins as the lady at the health shop said that the Drs here dont check how the other Vit Bs are. I will be going to my Dentist in about a fortnights time so will see if she can access this product. I live in New Zealand.

[Debbweb01 in reply to Spice]

Awe I hope so! I totally understand what ur going through! It seems 2 weeks is too long to wait. In the meantime read what rosserk replied on this post. I know the name rosserk is talking about. I don’t know if I can get it in USA, but it certainly sounds good and very much worth a try! Please keep me updated with what’s going on with you! I hear New Zealand is absolutely Beautiful! Good Luck and I pray you get the help u deserve and need! Godspeed

[Spice in reply to Debbweb01]

Oh thank you again. There is a lot for me to trial. Its very encourageing. And yes New Zealand is very beautiful. I am very pleased I live here away from all the mess that is going on around the world.

[Tally in reply to Debbweb01]

You are so kind xxx

[rosserk in reply to Spice]

Hi spice. Read my reply to this post it might help 😜

[Spice in reply to rosserk]

Thank you. I have added this infor to my arsenal of hints to try.

[SusieW2]

Just want to say it can't be that rare. I and my aunt both have it. Both of us need to severely limit our acidic food intake for relief. Already take Vit D. I'll ask about the B12 shots at appointment next week. Thanks!

[Debbweb01 in reply to SusieW2]

I googled it and that’s what it said plus they don’t know how to treat it as one of the posts said. Thank you though for letting me know! Godspeed

[Hidden in reply to SusieW2]

Yes I just replied saying this as my sister has BMS too. But then Sjögren’s is one of the listed causes and is very under diagnosed. Same with small fibre neuropathy (SFN) which Sjögren’s can also cause SFN . So I guess many more with BMS and SFN might have SS going undiagnosed - which makes all three rare?

My B12 levels are always good and I haven’t found that supplementing eases the BMS or SFN. In UK where I live it’s impossible to get B12 injections unless your serum B12 is under range.

[Debbweb01 in reply to Hidden]

What is SNF! Hope ur well! Godspeed

[Hidden]

Yes I have BMS relating to SS. I think it’s part of the small fibre neuropathy that some of us suffer. My sister has it too so I didn’t realise it’s considered rare. She is profoundly deaf and hers is idiopathic. She’s got nowhere with her doctors.

Mine affects my lips and gums and is slightly on the tip of my tongue. I don’t know if this is relevant to mine but I have a precancerous condition affecting my lip with early stage squamous cell carcinoma. I also have a lot of old fillings and old root canals from childhood - my teeth were always weak and crumbly which I think might relate to hypermobility EDS. I feel instinctively that both of these problems have triggered or are related to my burning lips and gums. The chemo cream I’m using makes the burning pain in my lips and gums really hard to bear.

I will follow this post and look for the paste! I know that stress is thought to be one cause and my neurologist loves to make me feel like I have health anxiety so I don’t dwell on this awful pain too much as I have tried all related medications and none have helped mine.

[SusieW2 in reply to Hidden]

Please try a low acid diet. It has helped us a lot. Also walnuts affect my sister and me.

[Debbweb01 in reply to Hidden]

Hi how r u doing ! I’ve been fine till now wasn’t able to get my vitamin B22 shots during The Covid and I bought liquid drops to put under my tongue! I’m having rough time now because I have severe infection in my stump! Lost my leg to APS/Hughes Syndrome! I had 2 badly fitted legs for past 6 months! Since I was hospitalized for infection I developed the burning mouth again God help us! I pray I was Abe to help y’all out! Godspeed wud love to hear how ur doing?

[St-Cherry]

I was diagnosed with Sjogrens about 3years ago. If i eat salty foods my mouth feels like its on fire and my tongue turns red. I have to have B12 and B complex injections every month for the rest of my life as I have pernicious anaemia as well. I live in South Africa.

[Stumpy01]

Thank you for your info as i have both sjogrens and burning mouth. Will try the paste xxx

[Debbweb01 in reply to Stumpy01]

Good how did you do I pray well because I have severe infection now I was hospitalized for 3 days and came home to BMS again So I’ll start my regiment again and pray my doctor refused to let me give myself my B12 during Covid so I got liquid under tongue! Now he has occasional openings! He’s an idiot! My immune system compromised now so I just got it back since my hospital stay! Hope n Pray you’re well

[harmony2]

Debbweb01 , Hi there. I'm interested in your comment about plaquenil/hydroxychlorquine making your mouth worse. I don't know if I have BMS but I feel like my mouth always feels very sore, sort of like a pizza burn on the roof of my mouth that I have attributed to severe dryness -- that the soft tissue wants to be moist but isn't very moist. also yes, i have to avoid tomatoes and spicy food. Did your ENT explain why plaquenil could make mouth condition worse. (I'm on it but also believe it has never helped.) thank you. sorry if I'm slow to reply I know you understand from your post!