Lifestyle change
Posted , 7 users are following.
Bit of a pointless post but i I just thought id share with you. i have had OlP for about 5 years now.
my triggers are most deffinately the good things like, beer, wine, chocolate spicey and salty foods (the good stuff)
i joined slimming world in January and am being fairly good with sticking to it my OlP has been soo much better since, no big open ulcers. If i cheat and have too much nice stuff i get a little break out and maybe a small ulcer but quickly getting back on the wagon helps almost immediately.
im guessing its what they call clean eating but its working for me, its not easy as i love my food but being relatively pain free certainly makes the sacrifices/restrictions worth while and ive found i can eat more fruit which was a trigger before but if im not eating all the other good stuff its kind of not tipping the scale if you know what i mean.
i suppose im saying there is hope, takes time to work out what works but i hope you can all come to an agreement with the condition and have less or no breakouts .
peace out xx
3 likes, 14 replies
melhell daniela66254
Posted
I have been diagnosed with LP of the skin but suspect I have the oral form as well although I have not had a biopsy to confirm. ALL the things you mentioned are triggers for me too. I try to avoid those things in excess since my outbreaks can last for weeks. Don't know which is worse the oral or skin version.
daniela66254 melhell
Posted
i do feel for everyone with this condition, there doesnt seem to be much anyone can do for either forms 😦
i hope you can get to grips with yours and beat it!
Esuma daniela66254
Posted
It's such a frustrating and complex thing to manage. Ive had OLP for two years now but haven't had any relief with it, only times it's been worse than others not better! I was on a strict Slimming World diet but never found it helped my mouth. The only thing I have found is that it's much worse when I'm stressed or ill. I have it on my tongue and sometimes when I've been poorly it's unbearably painful to the point it hurts to just have my tongue in my mouth!
Sadly I've not found any medication helpful. I had two treatments on the immunosuppressant cream, now I'm back on steroid rinse and anti fungal tablets as a preventative since the steroids can cause oral thrush. I'm having another biopsy next week.
I wonder about other autoimmune disorders and whether it's worth being checked for them somehow.
I've cut all spice out not sure I could cut everything else out too!
daniela66254 Esuma
Posted
it unbearable isnt it 😦, i totally get that feeling when it hurts to even move the tongue i resort to sucking ice when it gets that swollen and has the open ulcers nothing else works for me, when the saliva dries it just feels like its ripping the skin when i move my tongue, thankfully its not been like that since my last binge at Christmas and im going to stay strong this easter and stick to the diet! i hope your biopsy goes well! how often do you have them?
Esuma daniela66254
Posted
It really is a horrid condition. I might try ice next time it's really bad, last time I just had to keep spraying aloegel spray which didnt really help but was a slight relief!
This is only my second but my consultant just wanted to check it is the same thing still. Apparently I don't have any ulcers at the minute but it's still sore so I'm not sure what stops it being sore!? I see a consultant about every 3-6 months but he just keeps giving me the same things I've had before!
Mollyjr daniela66254
Posted
I don’t know if this works for others, but I have found a minty rinse helps after eating spicy or acidic foods like salad dressing.
daniela66254 Mollyjr
Posted
is that a herbal/homemade one or shop bought?
Mollyjr daniela66254
Posted
i’ve used essential oil peppermint and just different over-the-counter mouthwashes. Sometimes they work and sometimes they don’t . if I rinse right after eating in offensive food I have better luck .
Esuma Mollyjr
Posted
The problem I have is if something is the wrong kind of spice (still learning what is ok and what not!) then it burns and nothing relieves it so it ruins the meal and I lose my appetite from the pain. Very frustrating as sometimes it's things not traditionally spicy foods but it still burns like hell - even something in the batter of chicken burgers can hurt it's so ridiculous. My partner has to taste test everything! When my mouth is hurting from a kind of food I've yet to find anything that soothes - has anyone found anything that helps?
richard92537 daniela66254
Posted
The big question is---Has it affected your taste--can put up with the rest but not being able to taste a good steak drives me mad???
daniela66254 richard92537
Posted
ahh thankfully no, tastebuds are all good. I've not heard of it effecting taste before. 😕
melhell richard92537
Posted
Well that is interesting...because in 2007 I TOTALLY lost my sense of smell for a period of two years. I was told by a ENT that my olfactory nerve had been damaged by an upper respiratory infection. Since that time my sense of smell has returned but is not very strong. Taste is related to smell. Is your lack of taste caused by not being able to chew properly because of mouth ulcers?
ellen57898 daniela66254
Posted
I was diagnosed, through Biopsies to have OLP. I have been under the care of a Periodontist, who had inserts made for my upper and lower teeth. They go up to the top of my gums and palate. The inserts are a heavy duty flexible plastic and fit snugly on my teeth. They were made from some kind of sticky substance, like when you get a crown and the dentist has to make a mold. I have a cream, TRIAMCINOLONE, that i spread in the inserts with a q-tip. I leave them in my mouth for 30 minutes. I do that once a day. I had been doing it 2X day, but am now at 1X day. My gums are still red, but much better. My bigger concern is the recession of my gums. She is unable to do grafts, because of the OLP. I do get intense scaling and cleaning 3X year from her. Last year, she inserted antibiotics along my gum line, which has helped with the recession. I am not sure about food triggers, but stress and anxiety are my triggers. Life keeps getting in the way and there is always one or three things that worry me. I also have terrible insomnia ( nothing to do with OLP)
I also have VLP. It took a lot of trial and error, but my gyn sent me to an incredible specialist that only treat issues of the vulva and vagina. My biopsies showed severe VLP. After a zillion different meds, a couple of years ago I started on ELIDEL cream. It has been a life saver. I am now using it once a week and am in remission, after a ten year struggle. Talk to your doctors about those two meds for OLP and VLP. Google them....
I live near Washington DC and can give you the VLP doctor's info, if you are nearby. He has patients that come to him from many cities.
Thank you for listening to my rant. My usually buddy to cry to is my Golden Retriever. Hubby is so tired of my complaints.
daniela66254
Posted
happy to listen to you rant, its such an awfull condition we are in The UK we don't seem to have the specialist here. I dont have any follow ups or repeat biopsy's just left to manage it i can get sterioids from my gp when i need them but thats all 😦