Burning mouth etc

[Bluebud]

Hi I am at my wits end. I have Lupus, RA, Raynaulds

and Sorjens. I have been going to the doctors for weeks now regarding my mouth

and getting no where. it's really getting me down. The last time I was there I was in tears. I have a burning sensation on the roof of my mouth and tongue and will not go away. It has become all furry and the horrible taste is disgusting. I have also been getting swelling on the lower left hand side of my face the size of tennis ball, going up into my mouth under my tongue. I have been treated 5 times for thrush which hasn't helped. The swelling comes and goes. But the last time I was at the doctors because the swelling wasn't there at the time he sort of dismissed it and also said that it wasn't thrush as the treatment he has given me would have cleared it up completely.

I have to go back to him in two weeks and if I am still not happy he may refer me to see an Oral Surgeon. I came away feeling like a hypochondriac. Does anyone else get this and may no what it may be. It is really getting me down.

Thank you for listening xx

[PMRpro]

It could be a salivary gland problem - next time it happens go to the surgery and ask for a doctor to look at if while it is there. Or go to A&E. It is difficult to say what something is when you can't see it so make sure a doctor CAN see it. And take photos.

[Bluebud in reply to PMRpro]

Did mention to him I think that it could be my salivary glands but because the swelling went down when I was there he said no. It was that bad my husband wanted to take me to the hospital.. Thanks

[Paul_Howard Partner LUPUS UK]

Hi Bluebud,

We have a factsheet called 'LUPUS: The Mouth, Nose and Eyes' which has a little bit of information about how lupus can affect the mouth. It may be of interest. You can view or download it at lupusuk.org.uk/wp-content/u...

Hopefully the community here will be able to share some helpful tips with you. Good luck when you go back in two weeks. Keep us updated with how you are doing.

[Dolphin23]

Hi I also have all three and I am having the same problem. It's so bad sometimes I don't sleep well told the docs and when I go up they just keep looking and saying it's ok

[Chris21]

I'm beginning to realise there are not many gp's who understand auto immune diseases. Are you seeing a rheumatologist?if you havent an appointment coming up soon, could you ring the secretary and ask for advice?

When my mouth starts, I use biotene gel. I hate using it as it feels yuk in the mouth, but it does help. I always worry if my mouth taste is foul, have I got bad breathe! You have my sympathy as I know how it can 'drag' you down and make you feel so miserable. There's never any warning, it just flares up! I hope you get find some relief soon.

I've just remembered, you could also try the dentist. My dentist is quite clued up on sjogrens. X

[LUPUSadmin in reply to Chris21]

Thanks for your response Chris21. I'm glad that you've found this helpful (though sorry that it tastes disgusting). It's worth adding that because lupus varies from person to person, what might be helpful for one person could potentially be harmful for another. You should consult your doctor before trying any new treatments.

George

[Bluebud in reply to Chris21]

Yes I am seeing a rheumatologist my next appointment isn't till May. I have been to the dentist and have made another one for next week. I was given a mouth wash by the doctor. But I get the feeling he thinks it's all in my head.

[Hidden]

Burning mouth syndrome (BMS) can occur for a number of reasons. If you have secondary Sjogren's with your Lupus this is the most likely cause but sometimes it is psychosomatic, sometimes due to toxins, can be due to vitamin or mineral deficiencies or allergies as well as thrush/ candida etc. I have something similar in my gums, lips, nostrils, left cheek and eyes. I also have it everywhere apart from my tummy and chest but it only hurts in my mouth now - the rest is just tingly and numb because it's gone on for much longer.

I've had this in my mouth and face for over a year now - seen a neurologist, rheumatologist, two oral surgeons and a maxilofacial surgeon about it. Everyone concludes it is part of my small fibre neuropathy but no one knows (or seems to cares) what is causing this. I don't have a particularly dry mouth so not likely to be Sjogren's. I also have a horrible taste a lot of the time and am very dizzy and disorientated. I see another neurologist in another hospital at the end of this month. Mine doesn't follow a usual pattern of BMS because it doesn't affect my tongue or roof of mouth much thankfully. My gums and lips are really bad with it though.

My sister had it too after pneumonia and thrush but hers alleviated when she finally got iron and yeast levels sorted out plus started on vitamin D.

I really can't suggest anything that will help because I haven't found anything yet. But I absolutely understand how distressing it is. No doctor should dismiss you or make you feel a hypochondriac ever- but I know they have done this with me too. In fact I have just lodged a formal complaint (first time ever) about a GP who did this to me recently because I was able to read her notes about me - which did not serve her well at all!!

I think this is because there's nothing they can do rather than because there's nothing wrong. They should come clean about this though and admit they don't know enough about the effects of autoimmunity on the peripheral nervous system. They should also check your blood glucose levels for diabetes and your B12 for pernicious anaemia and rule out thyroid disorders. If they haven't done this yet then go back and be steely with them - take your hubby and explain it is making you very anxious and depressed as it would do if it was happening to them! good luck. X

[Bluebud in reply to Hidden]

Thanks for that it's good to no that I am not making this up. I have an appointment with my doctor on Wednesday and my husband is coming with me. Xx

[Hidden]

Prepare well and stick to your guns. If he thinks this is Fibro or depression related then make him prove it. X

[Yorkie12hyatt]

Hey what Dr r u seeing for this