hi! i´m from peru (28 years) and i have sjogren and scleroderma, and BMS but my bms is really hard, very strong and expanded to the lips and even the cheeks, some parts of the face and all around the mouth. Over a year ago I stop talking completely due to pain, i have to eat very soft food and the pain is permanent, since I wake up until I fall asleep, it's really a nightmare, i cant work, i don´t go out of my house, i feel hopeless and not even sure if is BMS and a mix of all my diseases... can someone help me? does anyone else have symptoms or pain like these till the point of stop talking at all? I'm traveling to philadelphia in a month because there is a specialized clinic in scleroderma and also my husband who is a doctor have been reading and researching of a laser therapy, someone heard of this?
I am so very sorry for you. All of us feel some sort of pain but I have never heard of the trouble you are going through. I was happy to read that your husband is a doctor. He knows its all real and not something you made up. I will pray for you as well as some sort of break through for the rest of us. Hang in there. My thoughts are with you. Margie
I am so sorry you are in this much distress. When I first came down with BMS I was very very sick with it. After 2 years it has reduced but still with me. I have been to numerous specialist and had many many test done and no one knows how to treat BMS. This is what I do for myself to get through the high burn days. I currently take an antidepressant, anxiety med, Benedryl in pill form 25mg every four hours and I use Magic Mouthwash prescribed by my ENT Dr. Although this works for me every one is different but wanted to let you know your not alone. MAYO CLINIC in the USA has seen many patients with BMS. You may want to consider looking into them. Also there is a very active BMS support group on FaceBook. Lots of good advice and caring people on it!
Hi. I have had BMS for almost 8 years. And yes. I have days where I have to limit my talking. If the pain is too strong I don't talk and need to do a quiet activity such as rest, nap, read, meditate or watch a show. I am 45 years old. I have a family. My husband, two children (14 and 12) and friends have been so supportive. Plus I have a dog I love I really have faith that this will go away. Some days are increadibly hard, some are ok and others are wonderful. I used to work but had to stop. I have chronic BMS. It's always there. With varying degrees of pain. I do what I can to stay healthy, if the pain is really bad I try my best to take care of me. I've learned to say "no I cant" to people and my kids through having BMS. I've been to so msny doctors and they dont have solution or reasons.
But I do believe things happen for a reason and trust that my pain will go away one day. I never give up. After almost 8 years of BMS I've learned to manage. And I've learned to trust myself. And know I can handle whatever comes my way. Even through the rough patches. Never give up! There will be a cure on day. -Raquel
I don't have the same issues as you I am a chronic pain sufferer with herniated disks, fibromyalgia, chronic fatigue syndrome, myofascial pain syndrome, spinal stenosis, bipolar and the list goes on. I have definitely sometimes just don't want to talk about (or think about) any of these. If someone initiates a conversation about any of them I will just tell them I don't want to talk about it, maybe another time. I do usually want to so I can inform them cause unless you have walked in my shoes you can't begin to understand. You should read a story called the spoon theory (search goggle for it). It applies to any disease that is invisible to others. I even have a neighbor that thinks bipolar is the same as being mentally challenged so I felt the need to talk to her even though I didn't feel like it.
hi, I have had burning mouth syndrome for 12 years now. it started after I had some dental work done. my mouth hurts all day every day. it is worse in the night. starts off in morning with low pain and continues to get worse all day. there are days that I cant talk at all and I cant answer phones sometimes. I have been seen by every type of dr. out there but to no use. sorry I could not be of help.
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