Re: Re: [FSG -- Burning tongue mouth syndrome- sharon

[Guest guest]

Do you have alot of acid reflux???? Like heartburn where the acid comes up in

your throat?

I have had that. Of course, it never affected my tongue or mouth. But if it

comes up in your mouth then it might do that. Or do you by chance have like a

yeast infection on your tongue. (called thrush). Just a shot in the dark here.

Or is it more like a nerve pain kind of thing? Surely hope you get over this

and get some relief from it.

Do you take some kind of medication for acid reflux??? Prilosec, Nexium,

Zantac, Pepcid or something?

hugs to ya,

Debra V.

sharon studley wrote:

Debra- So can you not imagine on top of all the pain, and not nervous

about laying down to sleep for fear the pain there returns, yet I want to sleep

to get rid of this mouth torture stuff. It also baffles the Dr's so no since

going. I swear it is cause I posted back to the member saying she was

experiencing it. Do you think in my case at least I may be right that it is

coming from my stomach being bothered, as I have excess acid to begin with, and

now the med's are acting my stomach up again, that this is what is happening? I

just should let it go and go crazy from all this instead of fighting it huh? How

much can we handle and not crack???,or at least split a little! Take Care, Hope

your work is still treaating you kindly. Thanks for your concern. hug yourself

for me!

Sharon

debra van ness wrote:

Sharon, I am so lucky I have never experienced that burning mouth pain. I cannot

imagine the agony. Oh sweetie, I just feel for you so much.

love ya,

Debra V.

sharon studley wrote:

Hey-

Doesn't it just make you want to rip your insides out! I have this real big need

to scream my guts out. I can't stand it, today again, waking to the pain, my

tongue again is totally on fire, roof of mouth. Someone mentioned this a couple

weeks back and I had posted on it, as a few yrs back I had it and now it is

back! I am not sleeping and now afraid to lay down, because this hip/back pain

get's so bad my med's don't even touch it, don't even know how often I take a

pill in night, just wake and pop, sleep a bit more, pop. I have really had

enough. I am holding on that spring weather will bring relief. I hope you a

lighter day. Take Care. Sharon

debra van ness wrote:

Yep Sharon. I took them and it was the first relief I had in days. I really did

not overdose on anything but I just took the normal doses all at once for each

med. I tell you what really got me. I had my sister over for Easter and rarely

see her. I was feeling so sluggish that after we ate I asked her " Do you mind if

I lay on the couch " ? Of course she did not mind at all. She does understand. But

I got kind of mad. I was thinking " why do I have to feel this way every single

day of my life... I have to miss out on everything " .... I got aggravated and

took the hydrocodone, the tramadol, the aleve, the aspirin and the muscle

relaxer. I said to myself kind of angrily.... " NOW maybe this shit will leave

for a while " . It did. It actually took about 2 or 3 hours though before it all

made any difference.

What a nightmare you had. Girl, I can understand why. It is the most horrible

feeling to have a doctor turn their back on us and call us idiots. The only

people in the world who can really help us are sometimes the ones that hurt us

the most because of disbelief.

Hope you have a good day.

love and hugs,

Debra V.

sharon studley wrote:

HEY DEBRA-

HI HOPE TODAY IS A BIT BETTER FOR YOU. I WOKE TO THAT PAIN AGAIN, IT IS DRIVING

ME NUTS! I DREAMED LAST NIGHT WENT TO DR. FOR CORTIZONE SHOT AND HE LAUGHED AT

ME, SAID HE DOESN'T HELP PEOPLE LIKE ME AND WALKED AWAY! GUESS IT IS THE FIBRO

HIDES SO NO HELP. I REMEMBER SCREAMING AT HIM AND WOKE. ???? I TOO HAVE AGED, MY

HUSBAND SAID TO ME LAST WEEK I WAS LOOKING IT, BUT HE DOESN'T CARE SO HE SAYS, I

THINK MY AGE HAS COME OUT IN PAST 6 MO, AS PEOPLE USE TO SAY THEY COULD NOT

BELIVE I HAVE GROWN CHILDREN, NOW THEY PROBABLY WOULD SAY CAN'T BELIVE I DON'T

HAVE G.GRAND CHILDEREN! WELL HOPE YOU FIND A BETTER DAY. IT IS ONLY 8* HERE AND

CAN'T STAND THE COLD ANYMORE REALLY KNOW IT IS NOT HELPING ANY. YOU WERE ABLE TO

TOLERATE ALL THOSE MED'S AT ONCE? I GET MY MOUTH ALL MESSED UP WHEN I TAKE MY

MED'S REGULAR??? BURNING TONGUE, AND MOUTH ALL ON FIRE, BELIVE IT COMES FROM MY

STOMACH HUH? I DON'T EAT, WHICH I KNOW I SHOULD, BUT DRINK DIET SODA AND WATER

ALL DAY,

AFTER SO MUCH PAIN, TAKING MED'S EVERYDAY AROUND THE CLOCK MOUTH AND TOUNGE GET

ALL INFLAMMED, NOW THAT DRIVING ME CRAZY!

TAKE CARE SHARON

debra van ness wrote:

No. I am not going off my pain medication. I just wish it would help more than

it does. I really don't want to go to a more potent narcotic. I just wish I had

an answer. The never ending exhaustion on top of the pain is just too much some

days. It is unbelievable what we can go through that others cannot possibly

imagine. I have aged 10 years in the last 4 years. I guess it is the constant

tired feeling, pushing myself to go on, and the pain.

love and hugs,

Debra V.

P.S.--- I reread my post. I left out the 100mg of Tramadol I took along with the

hydrocodone, aleve, and aspirin and the muscle relaxer.

sharon studley wrote:

Just want to say I did almost the same, only no naproxen, goes right to an ulcer

for me, no asprin either, just did the oxcycodone last 15mg now out, a muscle

relaxer, and a diazapam, had the icy hot all over my legs and arms and boy never

again had me freezing and in no big relief. burnt my legs actually in a.m. I

feel wih you, it get;s so much and you just need to try and get some relief. I

know as you this should not be done always but sometimes it is just to much and

I take some extra, not like I am doing any overdose amt, and the strentgh needs

to be upped or they offered me a stronger pill anyway. I wish now I could lay

down and get my little sleep I get without waking in enormous pain on my right

lower side! and I don't even lay on that side, and once it starts no stopping it

the only way to back it off is to completly sit up. Anyway hope you lighter

days,and Debra have you done a second thought on stopping the pain med now, as I

believe we need them? Take

care Sharon

debra van ness wrote: I was washed out, tired and in

constant all over body pain today. It was bad. I finally got tired of it and

took a mixture of meds and it did work.... but it is too much I am sure.

Ok.... I took a total of 15mg of Hydrocodone, 440 mg of Naproxen, 650mg of

Aspirin, and a Robaxin muscle relaxer. ALL at once. It did it for a while. I was

able to move without pain finally, participate in life with my kids a little bit

instead of laying on the couch like a pile of lifeless matter, and I even bathed

my little boy and cleaned to kid's bathroom. I cleaned the toilet, the tub, the

sink, the counter and the floor and the mirror. That was alot for me.

Just saying, it seems it gets harder and harder to put symptoms at bay. I could

have chosen to not take all those meds and just lay on the couch. But just for

today, I took that amount because that is what it took to get me out of pain. I

took some tramadol last night and a couple of flexerils because I did not want

to take any more hydrocodone after work. I also put some icy hot all over my

legs, arms and neck and upper back after my mineral bath last night. I woke up

feeling just as crappy as I did before I went to bed. Well, so be it. I guess if

I have to concoct some formula of pills once in a while to feel half way

functional, then I will. I know that any one of those meds alone would not have

done a thing for me. But together, I got some results.

It is also not good to take naproxen and aspirin together as they are both anti

inflamatory drugs and also are anti platelet drugs can make you bleed. But, I

don't do that every day.

Well, Thanks for listening,

hugs,

Debra V.

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