I'm writing about my daughter again. She hasn't been diagnosed at this point. Her rhuem. still is telling me that "Up to 5% of the 'normal' population has a positive ANA' ". (I have to say that every time he says that, he's minimizing our concerns). I read that when its a positive ANA and the person doesn't have lupus, its usually weakly positive, not grossly positive.
Anyway, I'm wondering if anybody suffers from sores in their mouth? My daughter has sores so badly that she cant' eat anything with spice or salt (ketchup, popcorn, cinnamon, you name it). She cries out if she tries to eat it anyway(for example, she loves ketchup....she's five), but it burns her mouth.
She has white sores on the underside of her tongue that don't hurt. She says the pain is on top of her tongue, her lips, and on the insides of her mouth. I don't see any sores there.
When I tell her rheum., he tells me that lupus mouth sores are painless. Would you agree?
Sorry your little daughter is having these bothersome symptoms at her tender age.
In my experience, the sores I had in my mouth were completely painless and were so small I didn't know they were there. My dentist found them and told me about them. At that time, I was in the self-diagnosis mode and that made odd symptom #4 out of the 11 usual lupus symptoms. There is a sticky at the top of this thread that lists those 11 symptoms if you haven't seen it.
I remember that two oral problems that cause white patches are Thrush and Candida Albicans. I don't know if either of them make eating some foods painful as your daughter is experiencing. I wonder if an ENT doctor or a dentist could make any helpful diagnosis? I think it would be worthwhile to ask.
Sorry to hear about your little girl. I get mouth sores too. They are painful. Salt, any thing spicy, and anything acidic--even acidic fruits like tomatos, strawberries, cranberry juice cause them to really hurt. Toothpaste really hurts also. I went to my primary doctor because I kept getting them and they would not go away. He said they were canker sores, that basically it is a sign that something is off in your immune system if you keep getting them or they don't go away. He prescribed Methylprednisolone (a week long steroid treatment in pill form) and Triamcinolone Acetonide a paste to put in the mouth. It takes it away. My mouth sores would start under my tongue and be red and then would go to my bottom lip. For some relief now I would give your daughter ice cream, cold pudding, cold milk and let her keep it in her mouth for awhile. It is truly painful when you eat salty and if you eat to much the pain lasts all day, long after you are done with the meal. For me, they keep coming back, the doctor ran some tests and because of my strong family history of autoimmune disorders I was eventually diagnosed by a rheumatolgy specialist with lupus. I too get frustrated when I read that the mouth sores are painless. I think that their must be two different types and unfortunately we have the painful canker sore or mouth ulcer that shows an overactive immune system. I hope this helps but I hope even more for your daughter to feel better. On a hopeful note: some people and children just get canker sores (or mouth ulcers) and that is all it is, change of weather, cold weather, stress, recent dental work and other factors bring them on. Hope this was helpful.
How terrible to have to watch you very young daughter go through this agony. I was diagnosed with Lupus about 5 years ago and I do get mouth, nose and ear sores....and they ARE painful. I can tolerate them most of the time but I try not to aggrivate them by eating soft foods and non spicy foods. My sores are usually around the rim or my tounge and look like tiny white heads surrounded by red ulcerated area, very small area. They are sore but sort of reach a peak where they are extremely sore and then fade away, lasting a total of maybe 3-4 days. I hope you daughter gets a diagnosis soon and they are able to help her out to ease her pain. Poor little thing!
Oh, wow. Thanks so much for responding. That sounds exactly what my daughter goes through. The dr. swears that it cannot be related to lupus though. He swears that lupus mouth sores are not painful. When she has the sores and eats something spicey or salty, she cries out in pain.
They are very small. But I think she gets them alot. Inside her cheeks, and on her tongue. Sometimes on her lips and in her nose.
Her next appointment is June 7th. The bloodwork is terrifying for her. Poor kid. The dr's make me angry though, because they tell me "don't worry, its probably nothing".
I hope the blood tests give some evidence of what is happening with your daughter. I can only imagine your frustration and your daughter's pain. I also get mouth sores of all sorts:canker sores, cold sores, and then these other ones that are sometimes painful but not always. I don't think they've ever been noted by a doctor though. I also get the nasal sores and they definitely hurt. I find it interesting that the sores aren't supposed to hurt...If true, it's surely a poorly named condition, I would think. Btw, I am not dx'd with lupus at the moment but have that or something similar developing. I'm seeing a rheumy/immunologist next month about it.
With regard to the doctor telling you not to worry...what a stupid to say!
Hi there. I've got SLE and get the non-painful mouth sores on the insides of my cheeks. The nose sores hurt though! I can't remember the condition, but I was just reading about some other serious condition that manifests in painful mouth sores, swollen cracked lips and something else.
I would take your daughter for several opinions from several specialists because the doc you've got does not seem to be sharing your sense of urgency and concern, and because a rheumatologist may only be looking for an autoimmune cause when there could be some completely different cause. Maybe an ear, nose and throat doctor? Any other specialists? You can also run an online search of her symptoms and see if any other illnesses come up that sound possible, and see what specialists deal with those.
Well I am not diagnosed with lupus but I could have it and I always have sores in my mouth.I do have a positive ANA, but that is the only positive test I have. I have other symptoms bla bla bla.
I can say that my mouth sores are extremely painful. I have on occasion found some tiny blisters that were not painful, but for the most part I get sick and then I have mouth sores that hurt really bad.I usually feel tired and achy when I have them, but not always. No step throat or nothing that the Doctors can find wrong with me so I just feel crazy and like a hypochondriac all the time. They are blisters on the sides of my tongue and then I get ulcers that reoccur in one particular area of the roof of my mouth. They occur beside of a tooth on the roof of my mouth beside my gums. The dentist has no explanation for this as far as his field goes. Anyway one urgent treatment center doctor saw the sores and blisters but all tests were negative and she felt very sorry for me so she prescribed some rinse called magic mouth. It is a rinse that they give cancer patients I believe for mouth cancer. Anyway I know it has lidocaine (numbing) and bendryl. It does help. I don't know the other ingredients it has or if there are any other ingredients in it. I hope things get better and doctors can be so upsetting sometimes. Search until you find one you are comfortable with.