I do get these occasionally .... they feel like I bit the inside of my mouth or something. I also get them in the winter where my lips "hinge." I can tell when I'm going to get increased symptoms because the rim of my upper lip gets RED and so sore/cracked that it bleeds. Then it peels and eventually goes away. I never knew what it was before but am now pretty convinced it's associated with CFIDS.

I have this problem too, I can't actually say that the other CFS symptoms get worse at the same time. But I get sores in my mouth and my lymph nodes act up!
My tests showed that Epstein Barr Virus(two of these levels were high) & CMV levels were both high.
Did your doc check for CMV ?

I also had high levels of the EBV in my system. I get canker sores in my mouth and it concerns me . I wasnt sure if they were related to CFS. I use an Oral Analgesic and Crest Pro Health mouthwash (acohol free) and it helps they clear up but theycome back? I dont think my CFS symptoms get any worse...havent noticed it.

I get sores -mostly on my tongue and my tongue gets all the taste buds sloughing off from time to time. My mouth almost always hurts-sometimes more than others. It started after I had my PE in Oct. and started taking the anticoagulant, coumadin. They tell me it is not from the coumadin, so I am wondering if it is an underlying yeast infection, which I am told can contribute to CFS/FMS. My F and F doc. suspects so too -he just started me on a 6-12 week course of Diflucon -I would be exstatic if it would go away. I just had the infectious labs drawn at my last visit -so will find the results to those out in August.

Your story sounds exactly like mine. I KNOW my CFS was triggered by EBV. I had it in my eyes first, then it showed up on a mono spot test as a high positive. But instead of throwing off the mono like a normal person, it kept recurring.
TO THIS DAY, when I am stressed several days in a row, I get the sore throat, achiness and total exhaustion. It's mono, over and over and over again. My immune system refuses to throw off that virus. That is CFIDS. Our immune systems don't throw things off, or they don't for years . . . . . Viruses lie dormant and come up to bite us when we least need them to . . . .
And YES, mouth ulcers and blisters have been recurring part of it for years . . . . .It's viral. Don't even bother with antifungals and certainly not antibiotics . . . . .

P.S.

Don't apologize for your questions. WEIRD is the definition of CFIDS!

You wouldn't believe the WEIRD skin problem I had 2 years ago.

My lips swelled up, my mouth was full of blisters, AND I had an incredible rash--I mean millions of angry red bumps--outside my genital area . . . .

The ignorant jackass of a doctor I went to at that time (I'm still paying for that mistake, since his notes sunk me with social security)
first prescribed an antibiotic, then an antifungal, then said, "maybe it's mouth cancer. I want you to see an ears nose & throat specialist."

Me: "Uh, doctor, aren't you forgetting the bottom half of my body . . . . .??!!"

Idiot M.D.: "You need to see an ENT and get a biopsy."

Me: "I've had weird rashes before, maybe nothing as weird as this, with my lips looking like a clown, but weird . . . .

And CORTISONE = PREDNISONE has always been the ONLY treatment."

Idiot M.D.: "I don't want to give you prednisone because it will get rid of the problem and I want you to have a biopsy first."

So I went to the ENT. I still had insurance then and could waste everyone's time. The ENT laughed at the biopsy idea and said, "What you need is PREDNISONE."

A month later the rashes were gone.

However, I haven't been able to use normal toothpaste or wear lipstick ever since. Lips and inside of mouth are too sensitive.

How's that for weird?

The idiot M.D., who, I found out too late, doesn't believe in CFIDS (must be living in 1982), actually diagnosed me with Bechet's Disease. Was willing to do that but not diagnose me with CFIDS.

I don't have Bechet's Disease. What I have is a WEIRD immune system that serves up WEIRD reactions, including skin reactions, every other week. . . . . . . . . .

I don't recommend prednisone for a couple of sores. I always have a couple of mouth sores.

But if it gets as bad as mine did in 2006, then prednisone is the only treatment that works.

Hey you all I agree so much with worm cause I felt better for 3 days and I kinda overdid it - the end result was a fever, swollen glands, hoareness, sore throat and aching body..I use that as a warning sign: REST, CHILL, AND SLOW DOWN.
I also agree that this stuff makes our immune systems supressed and I also had all these bacterial infections in the beginning. In my small bowels, uterus, stomach, and sinuses. My mouth I worry about at times cause I have so much trouble with it. There is a toothpaste you can buy that helps with canker sores, but like everything else It costs extra money.

Anytime my system has been run down my lips get dry, and i get ulcers constantly, it's the same with the CFS. When you're run down it happens

I get these cold/canker sores as well and I notice they seem to break out whenever my CFS symptoms increase or if I am having added stress as well.. My body and immune system just crashes and this happens. I take L-Lysine and Monolaurin on a daily basis to help my immune system and if I do get these I increase the dose and it helps a TON! They heal and go away alot quicker

Thanks for your replies everyone. I appreciate all the advice.
Worm, thanks for sharing your experience as well. I guess this CFIDS comes with alot of weird things - Glad to know I can come here for advice on those!

Hi Not sure if it is the same thing as canker sores but I get mouth ulsers whenever I eat more than a tiny but of sugar. ie if I drink sweetend drinks several times a day for a couple of days instead of herbal tea or water. They clear up in a few days if I stay off the sugary foods & get worse if I do not.

bump

I have "suffered" from a "sore mouth" ever since I started taking ALL the medications I have been on for MANY things, including ALL of these! and my mouth is VERY DRY, due to all the Medications, AND that can make your mouth VERY sore!!!
PLEASE! DON"T ever feel that anything you "ask" is dumb!!! IF "I" haven't asked it before you, then NOONE has!!!!!!!!!!!
They ,have yet, to do ANYTHING about tha,but I am "VERY IN TUNE" to my own body and I know that all of this relates!!!
God Bless you:)
Nancy

For years, like forty years, I got quite a few canker sores, an outbreak every four to six weeks. After adopting a mostly organic diet in 2004, they stopped, for the most part. I get a few outbreaks here and there, mostly if I start eating junk. I think chemicals in foods caused them. But also, I do think the CFS/immune problems contributed. Strangely, my brother, who has MS, would get canker sores at the same time as me, and we only see each other a few times a year! When I get a canker sore, the gland in my neck on the side the sore is located gets swollen and hurts.

same symptoms with me.All my life had canker sores or 'tonsilitis' looking stuff in throat. then painful mouth sores seemed to be bigger , more frequent, soon all the time.. then tongue. last fall diagnose with active epstein barr. Always before ,prevailing thought was ,'oh it is just a canker sore.
But I adjusted some things and for ME it is helping enormously, not only with sores, but seemingly with the fatigue that accompanies them. basically i quit acidic foods. of course citrus, but then tomatoes,bananas, most fruit, acidic coffee and tea. went to herbal tea and a caffeine tablet.
I will have frozen berries, occasional coffee.
i learned to notice the 'pre-sore' sensation in my gums and mouth. you can feel it, before a lesion erupts. as soon as i feel it i get back on mint or soothing tea and no acid. Many times the lesion will never break the skin and will recede. also i zap any small lesion immediately with anbesol, because if it gets going , it will grow.
also i changed toothpastes to one without SLS, sodium laurel sulfate. even natural brands have it. "Jasons' is one brand that does not have it.
hope this helps.. so many factors, but the above routine has kept my mouth lesion free for 7 months now. hope this helps