Hi! I'm 54 I have BMS along with severe dry mouth from Sjogrens. I have GERD and a small hiatal hernia. About 5 yrs ago I went thru some emotional trauma and then started having urinary retention issues that one Dr blamed on the Sjogrens causing nerve damage and I had to self cath 4 times a day. He wanted to put an InterStim device in my spine immediately and told me it was either that or self cath 4 times a day for life. He didn't do any urinary testing at all. I went to OSU for a second opinion. I did self cath for several months and it was awful. Just caused more problems with UTI's. Oddly enough it kind of went into remission shortly after I had urinary tests done which did show I had some voiding abnormalities and would benefit from internal pelvic floor physical therapy. I also saw an Oral Pathologist while I was at OSU for my mouth and she diagnosed the BMS. I had researched my symptoms and figured thats wat it was. She said there isn't alot known about it but it also has to do with some nerves and there was a specialist she knew of in Indy that uses some kind of device in your mouth I can't remember the specifics now. I need to try to look it up but she said it just happens out of nowhere no rhyme or reason but that there seemed to be a link to something significant going on in a persons life when it starts and that they can kind of pinpoint it to that. A stressful event or season for that person. I can see how that could be true for me. I was already on meds for Fibro and sleep. I was working FT then 14 hr days and at first it would start about 9am and then gradually get worse throughout the day and I woukd be so miserable by the time I got home I immediately would take my meds and go to bed at 7pm. All the Biotene and oral products, gum and mints in the world didnt help. My dentist prescribed me Lidocaine gel to put in my mouth and it didn't help. All I ever wanted to eat was watermelon and grapes and sherbet and other ice cream. Cold juicy foods. My lips and my gums burn really bad also. And having dry mouth from Sjogrens just makes it more miserable. I take Pilocarpine 4 times a day for saliva. The specialist couldnt get my salivary glands to produce when she maneuvered around in my mouth. My tongue gets sores. I also had battled Chronic Thrush for a long time and did Nystatin and Diflucan a long time. I would try not to consume sugar. It took probably 2 to 3 yrs to get better. But I'll be honest. When it started on top of everythung else I was battling physically and emotionally I wanted to die bc the only time I got relief was when I was asleep. And when I first woke up. You dont know what bodily functions u take for granted or dont think about until they don't do their job. I never ever thought about salivary glands. I have been in another very stressful season right now and BMS is in fully activated. And I went off most my sleep meds so only sleeping bout 3 nights a wk. I do think there has to be some correlation with nerves bc when I do sleep I have been waking up with my palms burning on fire. I take gel packs and frozen herbal packs to bed. I have to sleep with herbal pack on my face and put gel packs under my pillow so when my hands burn I grab them in the night. I also have what I'm pretty sure is Burning Feet Syndrome. I have PF also but I can't stand on my feet long b4 they start burning on fire and are bright red totally abnormal looking. Im waiting for a Neuro referral app to address neuropathies and other stuff. One of the other weirdest things that happened with my burning mouth was it felt like I had so much pressure on one side that my upper teeth felt like they were being shoved up into my gums and were just gonna totally disappear up into my gums. It was so annoying and the strangest sensation. I went to the dentist bc I thought there had to be something majorly wrong. He looked and said he didn't really see a reason why I had that sensation and then he looked at his computer and saw my Fibro Dx and meds I was on and he attributed it to that and my TMJ issues and made me feel like I was crazy. It actually was driving me crazy. Can't explain it really it was so weird. I feel like I get the weird no cure for stuff. Out of the blue over a year ago I started having severe itchy bumps that itch worst at night. Took 4ever to get diagnosed but 2 Biopsies later I now have this rare skin disease Grovers that has no cure. Long, complicated story but it has thrown me for a loop and effects my quality of life. And now my mouth is in a flare. Do u have issues with hot foods? I cannot stand anything at all the least bit spicy. Ppl think I'm crazy when I'm eating the same thing they are and I can't stand it.cuz it's too spicy to me. Oh and I also get a super salty taste or sweet taste in my mouth as well as metallic. One of my very 1st symptoms which I didn't know at the time was when I took a drink of h20 at work and I said omg wat is wrong with this h20 it tasted just like baking soda h20 if u know how that tastes. Super salty. My co worker took a drink and said tastes normal to her. 😂 I'll have to research the mouth device thing.