I remember the first time I connected my mouth sores to lupus. I was 17 years old. I have been suffering from lupus symptoms for over two years at that point, and after this weekend away is when I knew something was wrong.
I was on a family vacation and we were camping. My mouth was filled with sores. I was not receiving any treatment for lupus and didn’t even have a diagnosis yet, so my disease was ruling me.
I sat down to a family dinner inside of our pop-up camper and looked at my plate. My stomach was rumbling, but my mouth said “don’t you even dare put something in here, or you will be SORRY.” I fought that fight for a minute, then my stomach said: “just do it.” I put in a small forkful of food and tears welled in my eyes. The pain was intense. I had sores along both sides of my tongue, on the lining of my cheeks, under my tongue and some along the tooth line on top. I tried to hold the tears back, but I couldn’t. My mother stared at me wondering what was wrong with me. She told me I needed to keep eating. Another bite felt like it would end me from the pain.
Aphthous Stomatitis – or Those D**n Sores In Your Mouth
Needless to say, I did eat my meal and I made it through. These lesions affect 5-40 percent of lupus patients. They are not supposed to be painful, but I am not sure how any open sore in your mouth isn’t painful.
As my disease progressed I had to find a way to deal with the mouth sores when they set up shop in my mouth.
Tip 1: Change your toothpaste and mouthwash – specialty store-bought brands can help
The first thing I tried helped the quantity and frequency of the sores and that was changing from standard toothpaste brands to Biotene brand. Biotene is made for people with dry mouth, and if you know anything about lupus patients, dry eyes and mouth are common. I used this toothpaste for 10 years. It worked great for me, that is why I share this tip with you. I preferred the regular original flavor over the mint, but if you need mint they make a mint flavor. Let me give you a heads up I didn’t have… Biotene does not foam. It’s not this amazingly fresh awesomeness you are used to with standard toothpaste. It’s flat and bland. It’s supposed to be! That’s what keeps it safe for your mouth. Your mouth is different and needs to be treated accordingly.
Lucky for you, Biotene also makes a mouthwash. I will warn you here again. This is not a “kick you in the a**, feels amazing in your mouth” kinda mouthwash. This is a very soupy, thicker rinse. It will help your sores, frequency and intensity you will overlook the consistency of this product. It made a world of difference.
Tip 2: Make your own toothpaste and mouthwash
I used Biotene for 10 years. It did help me very much, but after awhile I decided I wanted to try something even more unique and make my own toothpaste and mouthwash. This was a big step because all I could remember was the pain of that day in the camper.
Here is what I did:
2 tbsp. coconut oil
2 tbsp. Bentonite Clay Powder
1 tsp. Bob’s Red Mill Baking Soda
½ tsp. Calcium Carbonate Powder
1 tsp. of distilled water
½ tsp. of peppermint flavor
Put it all in a small container. I scoop a small bit on my toothbrush with a clean finger. I use a small travel sized container like this.
A warning again. This is not your average toothpaste. If you were a little hesitant with Biotene, your first try of this will be similar. But if you are used to Biotene and have liked it for years, you will be fine. Don’t give up after the first try. It gets better. This toothpaste, not only helped with decreasing my sores by about 50 percent in frequency and length of presence, but it has helped with my tooth sensitivity issues, as well as decreased and healed cavities!
This toothpaste is also safe for kids! That’s right. Start your babies out with this and they will never know the difference. I have been using this on my son since we started brushing his teeth around 15 months of age. He has never had another toothpaste. He actually likes it. It’s safe if they swallow and has no added chemicals. My son is diagnosed with PFAPA, an autoimmune condition, and he also has mouth sores as part of his disease, and this toothpaste helps him too.
Want to learn more about PFAPA, and learn about tools that can help you stay organized to work with doctors to get a diagnosis for an unknown medical condition? Hop on over to my NEW site, itsnotjustavirus.com. We will be officially launching in 2016. Add your email to the list to be the first to see it launch and get valuable tools to help you with your disease, or your child’s.
This one is so simple you will be shocked. I literally use the same type of small travel container, fill it with baking soda and when I want to rinse, I take the lid off, put in about ½ tsp of baking soda (on the lid) fill the lid with a bit of warm water and stir with my finger, then sip it off the lid, rinse and spit. It’s that freakin’ easy! Helps heal sores far faster than anything I used before. I always use Bob’s Red Mill Baking Soda. I use this because it is finer and more delicate than other brands.
Let’s talk about these pests. I haven’t had nasal lesions as long as I have had the mouth sores, but they have been a regular symptom of mine for over 10 years. Again, these are “supposed to be painless” but once again – how can an open sore in a major pathway of your body be painless? They can’t. Mine range from sometimes annoying, to extremely painful depending on my disease, and the season and weather.
The act of just breathing with a bad sore is a chore and causes stress. I found an amazing, amazing product I cannot live without. As you will see, I am using affiliate links in this post, but I have purchased and used all of these products for years, and in fact became an affiliate to promote them they are so good.
So drumroll… Nasya Oil! It is the most amazing thing I have found for my nasal lesions. This is an ayurvedic oil made by Banya. It contains sesame oil, olive oil, Brahmi, Calamus, Skullcap and eucalyptus oil. It is a certified organic product.I have been using Nasya for three years now. The instructions call for you to put drops into your nose, but I take my pinky finger and dose it with the Nasya Oil and then rub the oil directly on the lesion in my nose. If your finger won’t fit in your nose to reach your lesion, a q-tip would work. Remember to always use the eyedropper in the container to place oil on your finger or a q-tip to prevent a germ factory in your bottle. Inserting a finger or a q-tip into your Nasya bottle is not sanitary.
Why Nasya Oil?
I have not seen or heard of another product like this one (but there very well could be). But I can tell you from my personal experience over the last three years, that once I put the oil in my nose I have immediate relief for a few hours. I reapply after that and use continually until the sore is healed. Not only does it provide with immediate relief, it heals the sores in about half of the time (and has a pleasant, calming smell).
So let’s all stop suffering from mouth and nasal sores. Take the bull by the horns and stop them in their tracks.
Let me know what you do to help ease your pain.
Please remember these recommendations are made based on my experience using them. None of these companies have contacted me to promote these products. Although I am an affiliate of Amazon.com where I purchase my products from, I have not been contacted to promote these products to you. I do so because I like them. I am not a medical doctor, and before using any new product you should always consult a physician, or dentist, to be sure it’s safe for you to use.
PAID ENDORSEMENT DISCLOSURE: In order for me to support my blogging activities, I may receive monetary compensation or other types of remuneration for my endorsement, recommendation, testimonial and/or link to any products or services from this blog.
If you would like to check out the brands and products I like on amazon.com – please check out my favorite brands page here.