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Posted 6/19/2008 12:44 AM (GMT 0)
After reading so many of your posts here, I feel like a lucky person but I am having a terrible day. I can't complain to anyone in my real life as they have endured enough with me this past year. So for anyone unlucky enough to be reading this, here goes:

I turned 49 a couple of days ago. This past year was easily the worst of my life. A year ago in May, I had a terrible bipolar episode which landed me in the hospital for a month. I believed trash cans and dogs were talking to me. After I got my meds adjusted I came home, but was down in bed for three months, paralyzed by depression. I got on my feet and went back to school for some recertification and started back to work in early December. A few days later I started choking and found out I had a stricture in my esophagus. I had some minor surgery on this...no big deal. But something happened during the surgery to my lower esophagus valve and I wound up with the worst case of GERD you could imagine. I've dropped 45 pounds since December. I started only on liquids. I'm off any coffee, soda, or alcohol. No tomatoes and not many vegies. Tiny meals. A big fear of eating in public. Things have gotten better but I still struggle some with the GERD.

Next came the discovery of a small freckle on my back which turned out to be a melanoma. Another stress! Got it removed.

Somewhere back when my bipolar episode hit, my teeth and gums started hurting. Really bad. I couldn't figure out what the heck it was. I thought it had to be all the psych meds I was taking. I jiggled my meds and the pain came and went . And came back and got worse. Spread over my tongue and started burning. Seriously painful. I talked to all my docs to no avail. They thought I was crazy. (Probably cause of the talking trash cans).

I got on the net and kept looking and found something called "burning mouth syndrome". I had never heard of it but the symptoms fit  exactly what I had. And I had like 5 of the risk factors. I networked and found a doc in my town who treats it. An orofacial pain doctor. I see him on June 30th.

To top it off, I have a bladder infection.

So why am I writing all this? First off, I am NOT the sick type. I am so embarrassed to be going to doctor after doctor. I hate it. I feel like such a hypochondriac. It's like one thing after another. I feel like my life is spiraling out of control.

And today the mouth burning is just so bad. It's late afternoon here and this is the worst time of the day for it. It's gone in the mornings and fades also by bedtime. It sounds like a stupid problem, but when it's you, it hurts.

To any poor soul who read all this, thank you for letting me vent.

Many hugs,

sophie

Posted 6/19/2008 1:06 AM (GMT 0)
Sophie:

I am so sorry you are having such a rough time. You needn't apologize at all, and you certainly shouldn't feel like your problems are stupid! I am glad you were able to find information about your symptoms and a doctor. I hope your appointment on the 30th will be a real turning point for you.

My prayers are with you.
Ry
Posted 6/19/2008 2:12 AM (GMT 0)
Dear Sophie,
I, too, am sorry to learn of the difficulties you're having. I know for a few years now I've felt like this dark cloud was hanging over me and I can't get it to move. Things, especially with health, slowly spiralling downward into some abyss. So I truly empathize.

Don't feel guilty about sharing all your feelings and problems. That's what we're here for, and most of us do the same thing in our times of need. I hope your appointment on the 30th leads to some relief, as it seems like the burning mouth is the worst, untreated problem you have.

Sending hugs your way,

PaLady
Posted 6/19/2008 4:00 AM (GMT 0)
1) Congratulations with your birthday Sophie.
2) Pain isn't stupid, it's just painful and needs to be treated. Not going to the doctor is stupid, besides, they have to earn a living as well right?
3) Looks like the worst part is over. The bladder infection will heal, and the treatment of your sore mouth is only a question of time.
4) If you feel you need to vent some more, feel free to do so; this forum is also known as Venting Shaft #17.

Take Care and keep us posted will you.
Posted 6/19/2008 10:13 AM (GMT 0)
Vent on Sophie! There are days it is the ONLY thing that helps and exactly what the Doc ordered.

Here is hoping you find some answers with the new Doc.

Hang in there as we all know better days come to us but not always when we need them to and patience isnt a virtue when your hurting.
Posted 6/19/2008 6:53 PM (GMT 0)
Thank you all so much for your kind thoughts. I've had a good morning so far....it's 11:15 here, but the burning is just starting up now. Fortunately, I have everything done I set out to do today. I just will rest and read and fold some clothes and get dinner.

It REALLY helped me to vent yesterday and to read all of your nice answers. It is so true that no one understands like someone who has been there. My husband tries hard, but he's never had constant returning pain. Although mine isn't exactly pain, it's a burning feeling. But it is terrible and a form of pain for sure. Sometimes I just give up and cry a little.

I've tried tylenol, aleve, etc. and xanax. Once I tried some pain meds left over from dental surgery but they just made me sick to my stomach. Ice chips help some. This morning my gums felt so raw I didn't want to brush my teeth. So I did it very lightly.

This is such a bizarre problem. I wish I could talk to someone else who has had it. I've found a couple of websites and posts from fellow sufferers but they are all really old posts. I figure they probably all went and leapt off a bridge or something.

Thanks for all your support :)
Posted 6/19/2008 7:11 PM (GMT 0)
Huge HUGS Sophie! Hang on and you'll make it. We'll be right beside you.

Chutzie
Posted 6/22/2008 12:25 AM (GMT 0)
Having a lot of mouth pain today. Only ten days till I see the new doc.

The new doc's office sent me the new patient questionnaire. It was pretty extensive. I wonder if they really read all that.

Took .5 of xanax and some Tylenol and am chugging ice water to try to settle down the mouth pain. Sometimes I just want to dig at my gums with my fingernails for relief. (I know that sounds gross!)

I am praying for all of us in pain. I need to get a handle on it.

Thanks for letting me vent.

sophie
Posted 6/22/2008 12:40 AM (GMT 0)

sophie,

I have not met you before, I am Kitt and I don't post much here but I do read.  I have some pain issues but not near as bad as most people here go through.

I have to tell you that you, my dear, have the one thing that will always get you through.............you have a wonderful sense of humor.  You can laugh at your talking to trash cans.  That is really awesome, even if your crying as you remember it, your still laughing at how it sounds to other people.

Never lose that sense of humor.

Gentle Hugs to You.
Kitt

Posted 6/22/2008 12:49 AM (GMT 0)
Martha,
Your last post reminded me of when I had gum surgery about 15 years ago. It was actually some of the worst pain I'd ever experienced up until recently. All I did was put ice packs on my face and go to bed. I changed them a couple of times an hour. It sounds like your drinking ice water helps, but I don't know if you've tried ice packs pretty much around your face. You may have mentioned it but I can't remember (forgive me, not one of my best weeks, either).

I hope it eases up for you.

PaLady
Posted 6/22/2008 3:39 AM (GMT 0)
Nice to meet you Kitt. Yes, it's either laugh or cry and at my age...you may as well laugh!

PALady, I will try an ice bag right now. It certainly cannot hurt. The xanax and Tylenol has taken the edge off a bit. The pain also gets a bit better toward late night. Thank god, right?
Posted 6/22/2008 8:31 AM (GMT 0)
Sophie, just what the others said - hang in there! As for sore mouth - when I was undergoing Chemo and contracted thrush (painful) I was given something called "cool's solution" - it was very soothing - maybe you could get it without the nystatin (that's the medication that cuts the thrush).

You know, you think you've been through something until you read these boards...my God...I am a breast cancer survivor x7 years and it just seemed as if I fell apart after chemo - one thing after another - a HUGE ovarian cyst (cancer thought of, but negative), appendix, multiple biopsies on alreaay treated breast due to suspicious lumps (I woulda had a mastectomy, if I'd known), hernia, then...layoff after being off work 6 months (to their credit, they had reorganized, and I was already one of two on the chopping block - I just made the grade due to my absences, and they kept my insurance going as long as they could). Then, in 2004, the day after an EGD, I woke up violently ill. Thinking it was the anesthetic at first, I ignored it but after 4 hours of non-stop vomiting, decided to get a ride into the hospital - diagnosis? Pneumonia and septicemia. This began an 8 month journey to the hospital one-two weeks/month with repeated pneumonias. I'd wake up sick to my stomach with a fever of 103 and it was an automatic beeline into the hospital. Finally, a bronchoscopy was done, and for 6 months I was pneumonia free. In that interem, I found a new doc and when I landed at his hospital once again, he did another bronch. This time, it bought over a year free of pneumonias. Now...starting last spring, I'm back to 'square one' - I had one pneumonia in the spring, 2 in the fall, and 4 since Feb of this year. We're looking and trying to figure this out - is it aspirant pneumonia brought on by sleep apnea (I am testing for that), or is it relative to my GERD, or as one doc said, are we just going to have to treat it when it hits, and transfuse me when my blood count drops - btw, when I become very ill, my blood counts drop, last hospital stay required a transfusion. All hospital stays now require an automatic PICC line - my right arm (where I had the nodes removed) is acting funny re swelling, and I'm a bit scared of lymphadema, but I can't talk 'em into keeping a PICC line in or reinstalling a port, even though I have NO veins left to speak of - IV stay before last was in shoulder; and this last stay - in thumb until PICC could be scheduled! Whew!

Hang in there Sophie! BTW, I'm relatively new, too. I have chronic back pain which is being WELL controlled by a medtronic morphine pump. check it out! This is NOT an advertisement - but a kudo to this wonderful piece of machinery that has freed me from my house for much longer periods. I had gone from about 900 mg morphine/day to EIGHT milligrams/day - quite a change!
Posted 6/23/2008 6:54 AM (GMT 0)

Hi granny,

Well, you have certainly been through the mill! I am so sorry to hear of your bad times BUT hearing them does remind me that I am fortunate to have the troubles I do.

Thrush can be one of the causes of burning mouth syndrome. I've looked all over my mouth and so has my dentist and no one suspects thrush. I did have it once when I was pregnant so I know what it looks and feels like. Ouch, it was awful! That cooling solution sounds really good.

I just read a post from some gal in the UK who went to a pain doc over there. I'm summarizing, but he said that BMS is a nerve dysfunction where your pain receptors are interpreting different sensations as pain. That's why different foods bother your mouth and toothpastes and mouthwashes make it so much worse, etc. Also, the area where these nerves are centered is right by your area for mood. So when you are depressed or upset your mouth feels worse (more burning) and when you have less stress the burning is better. This is true for me but I thought I was just psycho.

One of the main risks factors for BMS is being menopausal (I am 49, but have no idea if I am in menopause as I had an endometrial ablation done.) Another is having depression. (I went through that severe bipolar episode a year ago). Another is having GERD. (Mine is bad and flaring a lot). I have the perfect storm of BMS! They should take a picture of my mouth if they develop a national foundation for it!!!! I could be on the telethon.

One annoying thing about chronic pain (as you all well know) is how well it hides. If you open my mouth and look at my teeth and gums they look great. All nice and pink and healthy. All the teeth are there and looking good. No swelling or bleeding or redness. And my tongue looks perfectly fine. But the darn thing feels swollen and on fire. And my gums burn and burn.

Do you know how you go to the dentist and they sort of dig at your gums when they clean your teeth? Then your gums are sore after? it feels like that about 10 times worse. Then add in some throbbing. Next, pretend you took a bite of scalding cheese pizza and you burned the tongue and roof of your mouth. You're getting the idea of BMS. Somehow the burning also gets up and down into all your gums around your teeth. Absolutely bizarre. In the morning you wake up perfectly fine and by noon it begins. By dinner you are ready to cry and by bed it hurts but you can make it till sleep. Talking makes it worse cause your tongue swells so work is awkward as you stumble over words.

Plus, how do you tell people about this problem? I sure don't want to have back pain, but at least people have heard of it. if you go to work and say "OMG, my back is bad today..." they get the idea. But who believes someone who says their mouth is burning? Crazy.

I hereby nominate BMS for the most worthless and bizarre ailment on the chronic pain forum!!!(Yep, it was another bad pain night, can ya tell?)

Many hugs to all those suffering tonight--may tomorrow be better:)

sophie

Posted 6/23/2008 4:50 PM (GMT 0)
Dear Sophie,
Your description helps me to understand a bit more what you're going through. Many of us have one thing in common with our pain, and that is that it's "invisible' to other people. Especially nerve pain. But to hear all you feel in your mouth, only to have someone look inside and see perfect teeth and gums really sums it up.

Is this something like trigeminal neuralgia? (I think it's TGN) I say that because of your mention of the nerve. A friend's mother suffered with that for years and finally went down to Pittsburgh (even though they lived in Cleveland, the Cleveland Clinic docs didn't help!) and had a radiofrequency procedure to cauterize the nerve and her pain finally subsided. Is this kind of treatment recommended for what you have?

And yes, you're right about things being close to the area of the brain that affects mood. And pain that's so close to the brain has fewer places to be interrupted, so it makes it even harder to control. That's what I remember from gum surgery, which was horrific. They would only do your full mouth at one time because people who had half their mouth done wouldn't return for the other half!

I do hope you find some answers soon.

PaLady
Posted 6/23/2008 5:54 PM (GMT 0)
Thanks PALady for your good wishes!

I am not familiar with TGN. I've never heard of anyone doing a radiofrequency thing for BMS. Mostly what I've read is antidepressants and Klonopin. Of course, I already take a lot pf psych meds and Xanax, so I don't know if this new pain doc will want to change my meds or not. For some reason Klonopin works well for this (for some people) as opposed to Xanax. Some people also use a mouth guard or splint to take pressure off the tongue and teeth. This helps. There are lots of different small things that give different relief to different people. There doesn't seem to one answer for everyone, at least according to the internet. However, maybe this new doc is really up to date and has some new treatment ideas.

There can be a lot of causes of BMS from what I have read. Sometimes it just goes away on its own. Maybe I will get lucky. Some people find no relief. I do think I am lucky that I at least have found a doctor who treats it in my area. He was recommended by a specialist in Canada who has done extensive research into the disease. It's been awful to talk to my dentist, neurologist, and psych doctors and have them sort of stare at me when I tell them my mouth burns. When I contacted this doc by e-mail, he gave me his receptionist's number and told me to call for an appoinment. He said if I couldn't get in to call his personal cell number which he also included. At least he seemed relatively patient friendly and he knew what the heck I was talking about.

Yeah, gum surgery sounds awful. Gums are really a tender area. I've had back pain before and this is nothing like that, of course. This gets bad though in its own way. I guess the thing is...its the kind of pain that doesn't get you down in bed...you have to keep going and working, but you can hardly stand it...you just want to cry. Also, because I have no pain in the mornings, I always get up and think..."Gee, why are you making a fuss...this really is not so bad". But then the afternoon and evening rolls around and I'm back to disaster and desperation. A bad cycle.

Yuck, what a pity party.

I can't tell you though, how nice it is to vent on here. If this is bothering anyone to hear me whine, just ignore this thread.

And if anyone else needs to whine, I'd be glad to read it!!!!!
Posted 6/23/2008 11:20 PM (GMT 0)
Well Sophie, you have accomplished half the battle with finding a doctor that knows about this condition and who seems like a concerned individual. Finding a doctor you need when you need him is a wonderful thing. Keep hanging on, just a couple more days and you will be there. I hope and pray you get the relief you deserve. You poor thing. You have been throught the ringer with this thing.

I would be happy to continue to attend your pity party and I'll even bring a gift. What do you want? A gallon of water? A mouth guard? A good bottle of scotch whiskey?? Let me know and I'll meet up with you.

Do let us know how the doctor's appointment goes and how you are feeling from day to day. Sounds like there a quite a few people interested in what goes on in Sophie's life! We care.

Gentle Hugs,

Lindaloo
Posted 6/24/2008 9:11 PM (GMT 0)
Thanks Linda...this forum has been great!

Last night was a great night! The pain was definitely at a lower level. It was there but not incredibly bad at all.

It's 2 pm here and today is burning bad. I'm wondering if it will increase quite a bit by tonight or maybe stay the same.

I see my psychiatrist today. I'm going to tell him I am going to a orofacial pain guy for my burning mouth. I can't wait to see him stare at me again like I am crazy. Good times!

I've been reading in some other threads and am so amazed at other people in this forum and the pain they deal with. God bless these people!

sophie
Posted 6/24/2008 11:15 PM (GMT 0)
Hi Sophie,

I'm so sorry to hear about all you are going through.  You've definitely had your share of medical problems.  I am replying because my best friend and her daughter (16 yr. old) went through the same thing with their mouths.  Unfortunately, she is on 2nd honeymoon but I am going to send her an email anyway!  She is over it now, and it has been probably a year or so ago.  She did go to a specialist and I do remember she was told to try different toothpastes and to try some natural ones....Toms of Maine I believe is one.  He said sometimes they change the formulations a tiny bit, you won't be aware it's so slight but it can cause problems for some.  I wish I could remember what finally worked for her, but I'll find out.  I do know that neither of them were on any meds at all, so that obviously wasn't the cause. You hang in there, and I will give you a shout as soon as I find out any info.  Take care. 

Posted 6/24/2008 11:40 PM (GMT 0)
Thanks a lot Holly. I appreciate any info.

My psychiatrist actually asked me to send him any links to BMS I could find. I was really surprised.

So I am off to search for some quality articles about BMS.

Thanks all.:)
Posted 6/27/2008 5:29 AM (GMT 0)
Rough day/evening again today, but things have settled down. It's 10:23 here.

Isn't it weird how there is no pain in the morning, starts up at noonish...get worse in the afternoon and you're desperate by dinner time.

It peaks about 9pm and the calms down and I can fall asleep (with a Lunesta).

an odd pain pattern.

Talking has gotten difficult between about 2pm and 9 pm. My toungue is so swollen and burning, my words trip over each other. Ick.

Saying serious prayers about this doc on Monday, but trying to be realistic.

Many prayers to all who are suffering tonight.

sophie
Posted 6/27/2008 6:55 PM (GMT 0)
Hi, Martha,
So sorry you had another rough day and evening. Usually when we have a pain pattern it's telling us something. I know my pain gets worse as I go through the day, too, so it's probably related to movement, something I'm doing, etc. Just a guess but you probably talk once you're out of bed (like most of us do - kind of normal!!) and then your mouth pain worsens to the point where talking gets difficult. Be sure to tell your doc that.

I also hope your doc turns out to be just what you need. It's such a relief to know we have a doc or other health professional who understands and is willing to treat our symptoms. Takes away so much anxiety, which I know increases pain for all of us.

By the way, I saw your comment on the other thread about remembering to see the positive benefits of medications, and I totally agree. There's nothing that doesn't have some side effect, but where would we be without any of these medications? I hate to think!

Good luck on Monday - and let us know how it goes!

PaLady
Posted 6/30/2008 9:02 PM (GMT 0)
Hi all,

I just got back from my appointment with the specialist.

I was REALLY impressed with this guy's credentials. He is a specialist in orofacial pain and it looks like he is heavy into TMJ type disorders and migraines, atypical tooth pain, etc. His assistant did a really thorough check on my jaw and bite...which seemed a little off but within the normal range. I didn't have any soreness or tenderness around the jaw.

The doctor himself was friendly but not over friendly if you know what I mean. He had just gotten back from a week in Boston and a seminar thing there. He said there was a breakout on Burning Mouth Syndrome. Supposedly the latest thought is that in BMS there is a nerve that gets inflamed. In most people there is another nerve that causes the inflamed nerve to settle down, but in some people it does not and you feel the burning.

The biggest population for BMS is menopausal women. (I am 49, but am not sure if I am menopausal or not as I had an endometrial ablation done.) My symptoms are really "textbook" for BMS.

The doctor says the treatment for BMS is...you start with the least invasive treatments and progress from there. The first thing that could cause it is thrush..a fungal infection in the mouth. Although no one can see anything, he says I can have thrush and not see it. So he gave me a mouth rinse to use...a script for mycostatin or something. Next, he started me on a multivitamin and a B complex vitamin. BMS has been linked to low levels of B vitamins. He also started me on .5 mg on Klonopin per day. Finally, I am to ask my gyn to run a blood test for my estrogen level and take estrogen for a short period if my level is low. Then we will see where I am at. I go back to see him in two weeks.

Other treatments include tricyclic anti-depressants. Frankly, that is out in my case. I am bipolar and tricyclics are a no-no for me. Plus, I am already on a ton of psych drugs. He can also increase the Klonopin. He says some people are on up to 6 mg of Klonopin a day! HELLO! I'd be under the table and unconscious on that much meds. I already take a crapload of psych meds.

Any way I really liked him. He was no-nonsense, but kindly. He totally understood my complaint. And he at least started me on some things.

So that is my update for anyone out there who was following along.

I'm curious to see if any of this helps at all. Will keep you posted.

hugs to all in pain and hurrah to all those doing well:)
sophie
Posted 6/30/2008 10:41 PM (GMT 0)
Sophie,
Thanks for the update - and the information on BMS, which I had never heard of before. Now at least I know a ittle something. Let's hope this early round of treatment does the trick for you.

Yes, do keep us posted!

PaLady
Posted 6/30/2008 10:56 PM (GMT 0)
Thanks PA Lady. It's 4 pm here and I am feeling pretty good. I did take the Klonopin and the vitamins. The mouth rinse is coming home this evening with my husband. My mouth feels better than normal for this time of day. I think that is probably psychological. Obviously the vitamins haven't helped yet. Of course, the Klonopin could have helped a bit already. Hey, anything is progress!!! My tongue feels numb but is not burning or swollen. We'll see how it goes tonight.

Thanks so much for being here and for listening.

This is the dumbest problem. I feel silly even with my good friends saying..."hey, ya know my mouth is really burning!"
Posted 6/30/2008 11:19 PM (GMT 0)
You're welcome. And it's not dumb or silly at all. Pain is pain there's nothing silly about it no matter where it's located!

If the klonopin has helped, then that may tell you using relaxation strategies may at least help manage the pain better! I'm guessing you also feel relieved now that you've found someone to help. Try to do something enjoyable tonight - a little celebration even. Maybe a favorite tv show or something small.

Take care,

PaLady
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