add it to the list?
does anyone have a burning mouth? mine is at the top, really far back but not in my throat.
like everything else i thought it was a one off, one evening, perhaps i had burning it eating something?!?! it had persisted for 3 days now and i finally googled it, apparently it’s a syndrome all on its own.
i wouldn’t be surprised if it’s some neuropathy associated with the rest of my burning.
I think you’re right, bms is often associated with small fiber neuropathy. A neurologist I talked to said the most common cause of non length small fiber neuropathy (this can be verified with 3 punch biopsies in your leg … but generally when symptoms are not feet-prominent or feet-first) is sjogren’s (autoimmune). There are blood tests that are associated with Sjogren’s (ANA, anti-SSA, anti-SSB, RF), but the most accurate is a lip biopsy. I am desperate for answers so I am having my lip biopsy in Dec (I do not have BMS, but non length dependent SFN). Sjogren’s is traditionally associated with dryness, but the neuropathy can precede the dryness, and some neurologists think the emphasis of dryness symptoms over neuropathy symptoms is not justified and is one reason why Sjogren’s diagnosis tends to be so delayed (avg 3 yrs or so after onset). Dr. Oaklander (neurologist) has written recently that it is reasonable for anyone with unexplained small fiber polyneuropathy to consider a lip biopsy.
There might be some mouthwashes with lidocaine that could ameliorate the symptoms of BMS.
Hope you find answers for yourself, Cherry.
my lip biopsy came back negative. it’s not a dry mouth (i’m used to that) but a clear burning sensation at the very back. it’s only been 3 days so it may not be anything but i’m watching the EM and raynauds change and worsen so… of course i think the worst!
I was just reading through some of your old topics. Have you ever had genetic testing for the SCN9A mutation associated with erythromelalgia? Since you had childhood onset you might be likely to carry it. My other theory for you would be that perhaps you don’t have erythromelalgia at all and the burning is reactive hyperemia as a result of severe Raynaud’s. As stated before, I’d be interested to see what would happen if you were prescribed Cialis. I’d also be interested to see what would happen if you were given a lidocaine infusion, since you said you reacted positively to anesthesia. As debilitating as your symptoms have become, you need to find doctors willing to throw the kitchen sink at the problem and try everything.
Cherry - well at least you can rule that out. I agree with Carter, a lidocaine iv might be very worth trying (I think you have symptoms similar to me at least, in that a nose can flare, or a knee, then hands…and lidocaine has been the best thing for me). I’ve been trying to get a 5 day continuous lidocaine iv going for me in hopes to “reset” the nervous system. It’s been almost a year now trying (now that I’ve found a provider, it’s an insurance hurdle…) Lidocaine is actually dilating (while also blocking sodium channels) so it might help also your back-and-forth Raynaud’s/EM symptoms in that regard as well.
Sometimes they try a temp lido iv to see if you will respond to mex, which I know you are also thinking of trying.
Don’t give up. <3
PS - I was given viagra one winter to see if my EM / cold sensitivity would resolve, and in the end it wasn’t clear if it was helpful. But as I think about it more, I think the idea of “throwing a grenade” at your system, just to see if things shift in any way, might be the most efficient treatment algorithm in the long run (ie do a steroid pulse, then try a lidocaine iv, then try a super vasodilator like viagra/iloprost…wish i had done all that in the beginning, would have ruled out autimmune and uneven circulation issues much faster for me.) Instead, I tried this weak immune modulator (eg), then that one, then a little stronger one, and in the end docs are still not sure if I have autoimmune origin.
I just know you’ve been suffering a long time, and want you to get relief <3
still waiting on the mex
all my heart tests came back fine but i have a appt with my 4th derm january 4 and a pain specialist jan 9 so my doctor wants to me to hold off trying anything new until those appts.
medical marijuana is the only thing getting me thru the days now. it’s a constant cycle of shivering in my core and burning on the perimeter. the odd raynauds episode at random times too.
xoxoxo. thanks for your support
cherry, keep us posted on how the mex + your upcoming appts go - good luck!
Cherry, any update? How are you doing?
Recently I realised my low level lip burning wasn’t a reaction to sun lip block and that it was part of EM. Then a burning tongue, on the top surface like one has been drinking a hot drink and had a burn. I’ve found this more unpleasant than the feet. Since from time to time I’d use Bob’s heating protocol for my feet with great temporary relief I thought I’d try a heat pack on my lips. Last night I tried a wheat pack and it seemed to help, so I’ll carry on with that. Lyrica also helps a little. When I’m anxious or stressed it all escalates- meditation is great too. As has been said it’s worth trying this and that, usually in combination, to find what helps.
heya thanks for checking in
it comes and goes… same with my left eye. it’s not as painful as my feet, hands, ears, cheeks and knees but it is just, yet another thing, that isn’t normal!