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    Mouth/ Throat Sores?
    lisaisweavebee posted:
    Hi All,

    I am curious if anyone else out there gets sores in their throats? I know that many lupus patients get mouth/nasal ulcers (I get nasal ulcers) but I keep getting what feels like sores where the tongue attaches in the back of the throat. Where you can't see - of course - and will be quite painful for a day or so and then go away and then come annoying and painful!

    Maybe the rheumy at the Cleveland Clinic will have a idea. I see him this Tuesday ....wish me luck!!

    allie_bf responded:
    I get sore spots on the roof of my mouth, like you would get if you burned your mouth with pizza (minus the fun of actually getting to eat said pizza, of course.) Like yours, they last for several days then go away on their own. If they get bad enough, I just treat them with OTC spray, or (on occasion) lidocaine mouthwash. I don't know if its lupus (or the Sjogren's that I also have) but I've had this problem for years, and it's neither resolved, nor gotten any worse.
    Deb2755 responded:
    Yep. I get a burning sensation too in my mouth and tongue separate from occasional ulcers. I also have a clogged salivary gland.
    K2isKsquared replied to allie_bf's response:
    When my tounge / roof of mouth feel burnt it usually means I have thrush, which is a common problem for Lupies and is actually a yeast infection. Thrush can have a white or yellowish coating in the mouth, but sometimes mine just looks like bright red skin.

    If your issue is thrush, I think there is a rinse your doc can prescribe, but my doc prescribes pills -- the same ones used for yeast infections down below. Fluconase or something like that (sorry, bad memory).

    Good Luck,

    Vegreen responded:
    Hi Lisa,

    I get sores on my tongue that are pretty painful they come and go. I also wake up with a mild sore throat just about everyday. I was told to take folic acid for the ulcers on my tongue. I take one pill every day. I do not know if it helps because I still get them.

    squirmy1963 responded:
    Could be a lot of things. Do yu have GERD? I have similar issues and even loose my voice because of a stomache ulcer. folic acid and strong prescription prevacid are helpful. I also have sjogrens that causes my throat to get so dry it feels like it is sticking together. I take salagen for that. Saliva glands are continually swollen. See your doc and let us know.
    lisaisweavebee responded:
    Thanks all!

    I saw a Cleveland Clinic Rheumy last week and he is presenting my case at his conference with the other rheumies to see if they have any ideas as well. He is suppose to call this week and let me know what they have come up with concerning my care.

    I am just so sick and tired of being sick and tired.

    Lupylisa44 replied to lisaisweavebee's response:
    I was just going to ask: How did your appointment go in Cleveland?

    An_206363 replied to lisaisweavebee's response:

    Please let us know when you hear something from your doctor.

    I know you are tired of being sick and getting so little progress with treatments. Just don't give up! Please remind yourself that despair causes a lot of "nasty" bio-chemical reactions in your body that result in more physical manifestations of illness and even deeper valleys of hopelessness. (;-(

    I am convinced that I'd have died during three seperate episodes of severe illness and debility had I not kept an "expectation of recovery". (Mind over matter wasn't enough to fight against the will to die.)

    What has worked for me was I've always had a deeply held spiritual belief system that my life had a purpose and I hadn't fulfilled it yet. (E.g. I had a teenage daughter. My girl had no other adult women in her life. My disabled/widowed mother relied upon me, I was her only child.) See, I had important work to do!

    I also had to believe in something "bigger than myself" to just keep putting one foot in front of another, when I've really sick. This was particularly true with tolerating severe pain.

    I read while I wait in my different doctor's offices. This is sometimes hours every week. I am currently reading a book entitled, "Knowing God By His Names: A 21 Day Exercise".

    The night before I was scheduled for the surgical procedure that I had 2 weeks, my spirits were really low. I said "God, I need you to make me mindful of your presence. and that stuff about your having a "work" for my life, cause I AM REALLY TIRED!!!"

    During a break in my presurgical admission workup, the next morning, I opened my "doctor's appt. reading book". I'd inserted as a make shift book mark a note I'd written some weeks back that said "I shall live and not die and declare the works of the Lord". Psalms 118:17. I don't know why I'd written that down. However, that note that I'd written a week or so before, spoke so loudly to me personally, I said out loud, "Thank you God, I forgot, I am still my husband's wife, a mother, and an aunt. I needed that".)

    Lisa, I care deeply about you. I shared my heart with you in the hope that something that has helped me might help you, my friend.

    lisaisweavebee replied to An_206363's response:
    Thank you for your is so sweet of you!! Please don't worry, I am a longgggg wayyyyy away from being at the end of my rope...I'm just too darn ornery to let lupus (or whatever the heck I have) keep me down! And I have God to thank for that orneriness.

    That said, I do get tired of always being in pain and having something wrong with me (don't we all!!)

    I got a rather useless call from the Cleveland Clinic yesterday. The nurse called because the rheumy wanted me to know that my labs results were exactly the same...same as what, I asked?? She didn't know because he didn't say...I asked if he meant the same as the last labs he ran three years ago or the same as the last lab results I brought up with me when I went to see him...she said he didn't say and she didn't know what he was talking about... I then asked about the actual results, but she didn't have a copy or know any specifics about them...she did say he was going to present my case before the conference (I already knew this) but when I asked when that will be, she didn't know because....drum roll please..."he didn't say".... but she ended the call saying that the doctor was just wanting to keep me informed!! LOL>>>I just thanked her and hung up.

    So, my understanding is that my labs are the same as they were at some past point in my life, that he is going to meet with a unspecified group of individuals at some undetermined future date and will call me after said meeting takes place. Don't know if it will be this week, this month or this year but I'm sure they will keep me informed!!! to love em!

    Lupylisa44 replied to lisaisweavebee's response:
    You should go to University of Michigan...I had a great doctor there who was ranked #2 in the country...send me an email, I'll give you his name

    HG1948 replied to lisaisweavebee's response:

    I'm at exactly the same placeas you are with regard to my frustration level......particularly with my doctor's current office personnel. I the people who take and make patient and general public phone calls arn't trained. I am certain none of them are medical assistants, because they'd be trained to take notes, write down questions, and know what the parts are of a medical record. I think that they are just "the same people who answer the phones" in business offices everywhere, that employers consider temporary workers. However, when faced with the alternative of talking to a computer, I don't know which I prefer.

    I glad you've not lost your "rightous indignation", and ornierness, that is what I call my anger after I've calmed down. My grandma used to tell me, "You are such an ornery little girl, I don't know what will become of you!".

    Girl, littlel did I know that I would need that orneriness to just survive.

    Continue to hand tough.

    HG1948 replied to HG1948's response:
    "I think that the people who take and make calls...."

    "Continue to hang tough"

    I am not going to try to type anymore today. My brain thinks one thing, I type and different thing, and my eyes read something entirely different each time I read it.

    HG1948 replied to allie_bf's response:

    Have you ever tried niacin? I think I didn't get a strong enough strength. My sores arn't on the roof of my mouth when they arrive buy can be on my cheeks, and gums, it just makes sense to me that they can be anywhere, the mucus tissue is the same.

    I bought a product called "Kanka" sore relief. It coats the area and stops the pain for several hours.

    HG1948 replied to Deb2755's response:

    Did anyone ever tell you that your dry mouth caused your ulcers?

    My dentist told me that my dry mouth causes my cavities. I know it causes me to bite my jaw sometimes. For this I rinse my mouth out with Peroxidil mouthwash until the wound heals.


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