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Debbie Downer
Regular Member

Date Joined May 2009
Total Posts : 62
   Posted 5/16/2009 7:48 PM (GMT -6)   
OMG! I hate mouth sores. I get them way too much. I never used to get them. They always show up after one of my "I feel extra bad" weeks. They hurt so bad. I get them on the sides of my tongue as well and it makes it hard to eat and talk. I feel gross. I gather that they are another of my symptoms and are probably caused by whatever the heck is making me feel so run down. I only started getting them when my energy, health took a nose dive. New to me this week was migraines. I've never had them. I had a headache that lasted 5 days and Tylenol did absolutely nothing to help. Also, I felt dizzy and off balance. I still feel like that, but a little better. It felt like I had pressure in my head. I felt so bad that I had to go and get a cat scan just to make sure that I didn't have something crazy going on in my head. I have a lot of pain in my neck and my muscles are very tense. I've been taking muscle relaxers at night and they seem to help a little. My primary doctor is going to do more tests on Monday. From what I've read on here, it is pointless going to a primary doctor. I feel like my health is declining and I'm starting to get very anxious about the cause. The mouth sores are so bad right now my whole face hurts. Does anyone get these? What do you do for them?

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/16/2009 8:47 PM (GMT -6)   

Hi Jenna, I'm sorry you are feeling so poorly. Yes mouth sores are very common for us. There are different things that people here use. Your dr. can give you a percription for a mouth rinse that is a nystatin. 1 of them is rinse and spit and another is swish and swollow. There is one folks here call greenlizard. (don't ask me). But they say it works well. My pharmacist said that one of the ingredients is malox. She said just swish it around in your mouth and it will help. You might try that for now until you can get with your dr.

As far as not going to a regular pcp. I disagree. I think it all depends on how sharp your pcp is. Mine is the first one to catch my illness.

I hope you feel better soon


Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 5/16/2009 9:07 PM (GMT -6)   
Hi Jenna,

Your headache sounded like what I had a couple of months ago, except mine lasted for a month and a half! The only thing that helped was pred. I tried OTC migraine meds, 2 rx's my rheumy called in, Imitrex gave me chest pains, Maxalt worked sometimes but the Pred worked the best. I've never had headaches like that I don;t care to have another. It was so bad that I ended up missing 3 1/2 days of work, went to the ER and had a CT scan which came back clear (thankfully) and saw a neurologist. I finally determined it was the worst lupus flare I've ever had. My body was racked with inflammation in my joints too! I hope you find some relief soon!

Yes mouth sores are very common. Carol told you about the magic mouthwash there is also a dental paste you can use and you may want to talk to your doctor about folic acid. I take 3mg a day and that usually keeps them away unless I am flaring and right now I have 4 in my mouth! mad

Take care and keep us posted on how you are doing and of course ask more questions if you have them!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Debbie Downer
Regular Member

Date Joined May 2009
Total Posts : 62
   Posted 5/17/2009 12:14 AM (GMT -6)   
Thank you!! I will talk to my DR on Monday morning. Unfortunately, I do not have a lot of faith in her. I took a picture of the butterfly rash that I get on my face so that I could show her and she barely looked at it and then said I had rosacea and prescribed me metrogel. She wants to put me on anti-depressants for depression and anxiety. The only test that has come back positive is my ANA which was 1:320. When I asked her what the pattern was, she told me there was none (?????). She said that it could be a false positive (????). She is going to test for ANA again on Monday. It's frustrating when no one seems to take me seriously. This is the worst week I have had ever health wise. I feel so rundown and weak. I have 2 sores in my mouth and 3 on one side of my tongue. My neck is seriously inflamed and I am freezing. I cannot seem to get warm for anything. My entire body is sore, and I can barely bend my knees. I have a hard time believing that this is depression. I am not happy, but I am not depressed. I have a wonderful husband and two beautiful boys. I'm just so tired of feeling bad. I find myself lying to my husband when he asks me how I feel because I know he gets tired of hearing me complain. I was googling things one day and I came across Lupus and I almost fell out of my chair because it was like someone sat down and wrote out exactly how I was feeling in the list of symptoms. My DR said that I do not have Lupus. She tested my blood for a couple of tests that determine Lupus and both were negative. I don't know what to think anymore. I just want a diagnosis so that I can move on and know how to manage this. I started crying today because I miss the person I was 4 years ago. Whatever is happening to me is ruining me.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 5/17/2009 10:09 AM (GMT -6)   
A PCP is not trained to recognize or treat lupus. It sounds as though she is not capable of treating whatever you have going on even if it is not lupus. Lupus is not determined by "blood tests", see the 4 of 11 link in my signature.

I suggest you proceed to a rhuemotologist, who *IS* trained in these kinds of diseases, as soon as possible.

Depression is NOT characterized by mouth sores, any kind of rash, or 'freezing', or many of the other symptoms you mentioned -- and even if it was, a PCP is not trained in how to treat depression, that is a psychiatrist! And sometimes other drs when depression is caused by an illness or by meds *such as lupus and prednisone).

Your mouth sores and your "freezing" may be a single symptom of fever...if you read in the Lupus Resources thread *2ond from top) you will find what to look for in a lupus dr and what to expect at teh first appointment.

take care,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 5/17/2009 10:51 AM (GMT -6)   

I'm sorry you're going through such a rough time. Lynnwood is should march straight to the office of a good rheumy. And if you don't like the first one, keep searching till you find one that's a good fit. The doctor you describe doesn't sound like anyone I'd want to see either. Believe me, there are plenty of good, knowledgeable, and compassionate doctors out there who take the time to explain things to their patients.

And I agree with Okie that we should all see a PCP and a rheumy. My rheumy makes sure my pcp knows what's going on with me in terms of my lupus and my pcp takes care of everything else. They make a good team. Since I'm on immunosuppressants, my PCP keeps a close eye on me and always gets me right in if I catch a virus or something else that my body might have trouble fighting off. I don't know what I'd do without her. I hope you can find someone you have faith in and who will treat you like a human instead of the next 10 minute appointment.

I hope you can find some relief for your mouth sores. I get them so often (and nose sores too) that I almost forget that they are there.

You'll find that we lupies take charge of our health and don't just put ourselves in the hands of any doctor. Don't stop till you get some answers an some relief.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 5/17/2009 1:14 PM (GMT -6)   
Hey there, I was diagnosed 2 months ago with Lupus based on the fact that I had swollen joints and a positive ANA, I do not have any of the other criteria so I'm not convinced yet that is what I'm dealing with, but I do know that I am having autoimmune issues and both of my doctors agree with that. That is the blessing part because at least I am getting treatment and feeling better so I've had to accept that they are on to the right course of treatment. Haven't had the mouth sores, but they give me folic acid for that to prevent it so I feel blessed, but I know that they must be a pain in the butt. My sister-in-law goes on steroids for respiratory issues and she gets mouth sores all the time and ends up losing lots of weight and becoming depressed. I think there are special mouth washes that you can also use to heal the sores. You need to be your own health advocate and become educated about your symptoms. Please have your pcp send you to a rheumy. I love my PCP but he even admits that he is not the sole doctor to be treating me and my disease. I hope it all works out.

New Member

Date Joined May 2009
Total Posts : 17
   Posted 5/17/2009 8:57 PM (GMT -6)   
I get those terrible mouth sores too! And I just want to say I empathize with you. I HATE THEM about as much as the dry mouth with is just hateful in the constantly annoying...and then having to pee..way!!! I also almost always have sores on the corner of my mouth. I thought they were cold sores. My Doctor (Rhummy) told me they were not they were from dry mouth...which I guess is never ending. With dry mouth the sores hurt even worse when they come. Like you, I get them at the end, or along with a particularly exhausting or stressful time..and I want to curl up and i hear ya!!


Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/20/2009 10:23 PM (GMT -6)   
Hey Jenna . . .

How did the doc appointment go? Are you feeling any better?


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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