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Posted 9/6/2013 7:40 AM (GMT 0)
Hi all

I know this has been discussed before, but I can't remember what we said about it.

on and off I have been getting a really sore tongue...like today really sore with a small red patch on tip. Plus roof of my mouth feels a bit sore too.

Is this another strange symptom of fibro? Does anyone else get this sore tongue, that just comes and goes?

I have been checked for autoimmune diseases, i take loads of vitamins and all my blood works are fine.

I often get mouth ulcers also

Im on Amitriptyline and propaponol...i don't see doc until next week
Posted 9/6/2013 4:18 PM (GMT 0)
Wackers, have you read lupus.org website? There is a list of the 11 indicators of lupus. You only need to met 4 of them and your symptoms sound so much like me on the lupus side.

I have lupus and I get mouth sores a lot.
Posted 9/6/2013 4:59 PM (GMT 0)
Interesting. When I am super-stressed, my anxiety comes out in biting my tongue (telling, hm?) when sleeping. It gets super-sore. Also, I frequently bite the inside of my mouth, due to small mouth.

Are you sure that it's medical and not accidental?
Posted 9/6/2013 5:18 PM (GMT 0)
couchtater - i have been tested for lupus twice...and both negative. does that mean I could still have it?

Myself - I too have small mouth and do sleep with mouth open, I have always had mouth ulcers, my whole life...It could be more sensitive due to fibro perhaps...Im thinking i have probably burned it on food or something
Posted 9/6/2013 5:27 PM (GMT 0)
i had the ANA test twice and both times negative, also my white blood cells were not low, they were quite high...i don't get the rashes or hair loss. I had a friend who had lupus, its an illness I am quite familiar with...unfortunately she died (not of the lupus) but heart related.

I do however get joint pain and mouth problems, fatigue and swollen glands...Its so hard to determine which condition you can have when so many of them overlap...fibro can cause some of these and so can CFS

I feel like sometimes all these symptoms overlap so much it drives me mad! Does that make sense? I do hope its not that, as I have been taking melatonin for about 5 weeks now and i seem to remember someone saying you can't take that if you have lupus :o(
Posted 9/6/2013 7:40 PM (GMT 0)
Bacteria can help these ulcers along, too.  I have Crohn's and can get mouth ulcers...canker sores.  I use straight rum.  I swish it around in my mouth and spit it out and repeat it about 12 hours later.  It will burn like a son of a gun and then your mouth will feel numb for a few minutes.  The canker sores start feeling better in a few hours.  The second time you do this, it doesn't burn nearly as much.  I usually do this for several days until they are all gone.

 

Fishchris was having a big problem with this and tried everything.  I told him what I did, he tried it, and it cleared up the sores.

 

Sherrine

Posted 9/6/2013 8:41 PM (GMT 0)
Yes, you can still have lupus without the high ANA. What is your CRP, ESR, and Compliments?

When your joints hurt do they swell also? Fibro doesn't make your joints swell any. Do you get strange fevers? Lupus causes fevers. Is your normal body temp below normal? Mine runs 96.8.
Posted 9/6/2013 11:48 PM (GMT 0)
I have Sjogrens Syndrome, which is my immune system attacking my moisture producing glands, especially in my mouth and eyes. In the mouth you can get thrush, but its not the kind of thrush that children get with the white spots. In its later stages, your mouth is an all over bright red. It feels like you put a bunch of hot peppers in your mouth and just leave them there. It hurts so bad that even a sip of water causes pain. There is a medicine or this, its called Fluconazole. I dont know if this is what you have, but it could be a possibility. Oh, also people who take medicines that cause dry mouth can get this type of thrush. Good luck at the Drs.
Posted 9/7/2013 7:45 AM (GMT 0)
Hi Sherrine - Thanks for advice I will try that! My dad used to use something which kind of burned them off, he gets them too and it does hurt but works

Couchtater - ESR was really low, don't get any inflammation at all, my dad has RA and the doc keeps checking me for this as it could run in families...don't get fevers and my body temp is consistently around 96 so yes below normal, but I don't get fevers...just a few hot flashes....Im not sure what is CRP and Compliments?
I read somewhere that 95% of people with Lupus show the positive ANA ...I also am not sun sensitive, can sit in full sun, do burn a bit as im fair with freckles, don't get any rashes on face or body - i dont think it can be lupus...what do you think?

Thanks Leda2...I think its probably due to amitriptyline, this causes excessive dry mouth. Im going to try and visit the dentist also as sometimes they can help better with mouth problems other than doctors...I also have ENT appointment in October - will mention to them

Thanks everyone :o)
Posted 9/7/2013 6:00 PM (GMT 0)
Maybe not...
You're complaints just sound so much like my lupus.
Posted 9/8/2013 11:43 PM (GMT 0)
Wackers, I've gotten that a few times...especially after taking a high dose vitamin D for some reason. For me it feels more like an irritated tip of the tongue. Other times, I've actually burned it slightly and it gets "sore" or "irritated" for a few days..longer than what it should be based on the degree of the burn.

So basically, to me, it just sounds like more of the same...fibro hyper-sensitivity.
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