I can't take this much longer!

Hi Mrsmop, I am in the USA and I did have reflux when I was in my thirties. I don't have heartburn, but my doctor said I could have reflux without the heartburn. I am taking a fourteen day course of Prilosec to see if it helps. It states that a person may not feel any affect for four days, but after the two weeks, you must stop taking it and wait four months to take it again for 14 days. At one point, I was seeing a pain management doctor before I had Sjogren's for nerve damage in my lower jaw. I was on oxycontin, oxydcone, and morphine (not all at the same time). These drugs really don't help nerve pain and were too upsetting to my stomach so I stopped all of the drugs. My doctor prescribed hydrocodone, which really doesn't help the lip burning and binds me up, so I don't take it. I have to live with this pain and it truly ruined what is left of my life. I appreciate your kindness. Blessings, donna

Dear mrsmop,

I finished the two week course of Prilosec and it did not help me at all. The label warns to only take for 2 weeks and stop for 4 months. It also read that one may not feel affects for 4 days. I kept spitting up liquids all through the two weeks, and I don't have heartburn. Blessings, donna

You might find that Ranitidine [Zantac] is a better option Donna, it doesn't do as much damage to your body as the Prilosec. I was prescribed the Prilosec equivalent in the UK, for 3 months & it did help me but I will not take it because of what it does to my bones, hence the Ranitidine.

Good luck Donna

Thank you mrsmop,

I took Prilosec for the 2 weeks and it didn't change anything. I don't get heartburn, but because I spit up liquids (not food) including water, my doctor said I could have reflux without heartburn. I guess that rules reflux out. If it did stop me from spitting up, I then would have tried Prilosec. However, I believe the instructions on Prilosec are the same with the 2 week rule. Before these were over the counter drugs, a doctor would prescribe it for as long as needed. Most doctors are not aware of what the directions are unless they take it themselves. I thank you for you kindness though. Blessings, donna

Thank you for the hugs; they are certainly appreciated. take Pilocarpine to help me salivate and I also use Biotene spray, gum and mouthwash. I did see a rhuematologist that I have no faith in. Because my blood work came back negative for antibodies, I had to ask her if a lip biopsy might reveal if I had Sjogren's. She said yes it could and told me should could prescribe Salagen which is what I am taking the generic of; Pilocarpine. I asked where I could get a lip biopsy and she said an oral surgeon, which I do not have insurance for. I asked if a dermatologist could do one and she said perhaps. I got in touch with my dermatologist who is also a surgeon and she gave me two lip biopsies because she one might not show the antibodies. She was correct; no antibodies, but changes consistent with Sjogren's. Because I don't have rheumatoid arthritis I will not take Plaquenil which has so many side effects and I doubt it will help the lip burning. Blessings and thank you for your advise and kindness. donna

Well, the terrible joint pain also takes a back seat to the lip burning that is constant for two years now. I have no saliva without Pilocarpine and even with that my saliva is still so thick and sticky. It is 11:15 PM and I haven't even eaten. I don't enjoy eating because of the food sticking to my teeth. My tongue is now starting to hurt from being so sore. I can't even cry tears anymore. I certainly feel for you and I hope that you will feel better. Blessings, donna

Thank you for reaching out to me which I find very kind. I do have a psychiatrist who is well aware that I have suicide ideation, but I won't do anything about it. I just really wish my time would come and I hope I just don't go through worse than I already am going through. I realize that a lot of people have it much worse than I do, but that causes me more depression; for them and also to realize that at my age, I am degenerating. I am doing my best but my best is not enough. Please be assured I will not harm myself as I am trying to get better and not worse. Blessings upon you, donna

Hi Jalanez,

I have tried Biotene spray, gum, mouthwash and Sensodyne toothpaste as well. It does not stop the constant pain. I try to eat only glutene free foods and I have done so much research to no end. I have tried the "magic mouthwash"; nothing stops the burning! This is due to not only the Sjogren's, BMS, but also the nerve pain. There is not much that can be done for nerve pain in the lip. I was an EMG technician about 30 years ago which is nerve conduction studies. I am highly aware that nerve pain from trauma; which I had to my lower jaw, and infections; from a resident surgeon who ripped a stitch out of my mouth when I told him to stop, caused three months of infections. I have been living with pain for over ten years but it got much worse from the BMS and the Sjogren's, combined with Hashimoto's. I can hardley swallow, have seen so many doctors, and my son who is what is left of my family, moved so far away. I am on my own and have a house that is so large and I am the one who does everything here; even washing the outside windows. I need to get off computer as it is 11:30PM and I haven't eaten anything and need sleep badly. I have a lot of nerve damage which is affecting my feet and a few weeks ago fell because of no sensation in my foot. I couldn't recall falling but needed stitches above my left eye. I don't like to go out at all and I know I am becoming agorophobic. I just am sick of feeling so much pain day in and day out and the only relief is sleep. Blessings, donna

I remember you wrote to someone that this goes into remission. Has your Sjogren's ever gone into remission? I feel that everything is getting worse between the Hashimoto's, Facial neuropathy, Sjogren's and BMS. I read about LowFod, but it is mostly for irritable bowel syndrome. Some of the food that is on the diet, like tomato tends to burn my mouth as does any high acid food. I do try to eat only gluten free foods. I truly believe the nerve damage is why my pain will not cease. Blessings, donna

Hi Donna, I really feel for you and all the pain that you are experiencing, it can really wear a person down. I am unable to use pain medication for several reasons and I do use Gabapentin but a very low dose now that I rely primarily on diet and CBD oil. Diet has played a much bigger part in my health than I ever thought possible. The searing pain I get that radiates out of my feet non-stop, the horrid swelling, cracking, and bleeding sores on my tongue can mostly be traced back to my dietary choices (unless I've been hit with stress, lack of sleep, or get a minor illness- these tend to set off flares for me).

What I am calling "remission" is a period of time in which I am feeling most like my old self. I feel like I can actually take a full breath without gasping, I have energy to take a real walk, the light doesn't burn my eyes, I'm not avoiding people, etc. Also, after having spent literally years in bed and housebound I am working on mindfulness techniques to try to work past my anxiety and depression, both of which have really taken a hold of me since becoming so ill. My new favorite thing when I cannot sleep (most nights) is to light a smell good candle and listen to soothing music. This might not seem like much but it makes me feel pampered and feeds my senses with worthiness., something I think I really need to be reminded of these days. I hope this helps, I know this is a huge struggle, your pain sounds unbearable at times. Reach out anytime.

Hi Jalanez, I feel for you as well. I have tried everything. Nothing seems to help except sleep. I shouldn't even be on the computer right now, as I have to accomplish so many things which exacerbate my pain. Thank you for your sweet kindness. Blessings, donna