This process had continued for over a year and the white lines and soreness did not heal.
Later that month, I went to an ENT who made the same diagnosis independent of the periodontist. While the periodontist had told me the condition could go into remission, the ENT was not as optimistic.
Since then, life with OLP has been challenging at times.
I have been an insulin dependent diabetic most of my life, so I was familiar with diets and food limitations. However, diabetes never limited my choices like OLP.
I have always been an avid gardener and over time found tomato varieties that were low acid and I can actually eat some of these fresh. They are the older varieties, often white, yellow or orange in color. I am happy now!
Other foods that bother include most spicy items, mint, sharp crackers, which poke the sores in my mouth, and as of late, sugar. That last one is a problem when I get hypoglycemia.
If I can’t get the lows to stop, my mouth gets very badly broken out. It helps to rinse after eating and if all else fails, I can usually get enough milk with chocolate flavoring down to raise the blood sugar.
This has encouraged me to always check for low blood sugar before treating using a test strip rather than guessing. It’s a really good incentive to not eat anything sweet unless I have no choice.
Now I just know that sometimes, no matter how well I plan, things are not going to work out and that I just need to accept that some food items will end up composted instead of eaten. It’s nothing I can control.
People ask what the sores feel like—I usually say it feels like every morning one starts out with a really hot cup of coffee, one takes a big swig of the coffee and burns the inside of their mouth.
This is the erosive state, which my OLP seems to stay in much of the time. Sometimes, the sores are similar in feeling to canker sores. It varies.
Since there is no cure for OLP (as with most auto-immune diseases), one can only manage the symptoms. There are steroid creams that help. Local anesthetics, such as Lidocaine, are used sometimes, but my ENT is not fond of using lidocaine, so I don’t do that.
Over time, I have developed a self-care routine using OTC and herbal medications. I use three or four different mouth washes (Act: children’s flavor, Listerine, Biotene and an herbal one with aloe and tea tree oil), toothpaste without mint (prescription fluoride berry flavored and Biotene toothpaste).
I have recently added aloe gel (after reading on this blog about the studies that were done) and am trying a mouthwash and toothpaste. It’s necessary to keep the routine at all times. If I start slacking off, the sores get bigger and nastier.
The reason for the over the counter routine is I am allergic to a large number of medications and I don’t tolerate most medications well in general.
However, with OLP, one usually has to make a lot of mental (or physical) notes because there are so many things that affect the condition. Many doctors and studies tell us that stress affects OLP. I am not sure on this in my case.
A physical stress-especially problems with teeth and low blood sugars—definitely do. Other stress is not so clear. The sores can erupt when I am happy and things are going very well. They can clear when I’m miserable and everything is going wrong. I personally have not seen the connection.
In addition, I tend to cut my food into very small pieces so chewing is easier and there are fewer sharp edges to poke the sores. At times, I really do feel like I’m eating like a two-year-old.
This entire routine can at a times be very challenging. I try to maintain a good attitude, learning to just yelp when things hurt and accepting that foods I want will not always be something I can eat. Honestly, if I could cure one disease I have, OLP would be the one. However, for now there is no cure so I just deal with it.