I have changes consistent with Sjogren’s, along with Hashimoto’s thyroiditis, and burning mouth syndrome. I am 66, a widow on my own and I am so fatiqued, depressed and in constant pain which is in my lower lip. My mouth doesn’t feel like it’s mine anymore. I don’t have thrush, I am taking Pilocarpine to help me salivate and I can’t even cry with tears. The worst part is not only the pain but the fact that everything sticks to my teeth so I am always flossing and rinsing with water. I also keep spitting up water and other liquids, but not food. My doctor thinks I have reflux but I don’t have heartburn. Even if I did, one can only take Prilosec or Previcid for no longer than 14 days, so after that then what? Does anyone else have a problem with spitting up liquids? My joints in my thumbs are so painful and a thumb brace doesn’t help. I can barely open anything. I also have terrible joint pain where my large leg bone meets near my butt. It is painful to sit or even walk. However, the greatest pain is in my mouth as I also have facial neuopathy. I don’t know why I am even here anymore. I just want to sleep forever. Blessings to all of you, donna
Hi Donna, I am sorry you are going through such a rough time at the moment.
Are you in the UK? I get the feeling that perhaps you are elsewhere in the world.
I don’t have Hashimotos or any thyroid problems but I do have what was diagnosed as Sjogren’s but then they decided it was something else. One of my clinicians told me I had reflux disease - like you, I didn’t think I did but, I took the drugs he prescribed. Initially, I took Lansoprazole, which helped a lot but then I read up on it and found that Ranitidine [Zantac] was a much better option. I was also prescribed Gaviscon Advance 4 times a day after meals. I now recognise when I need to take Gaviscon or Ranitidine.
I can’t really advise you about Sjogren’s but, do try Ranitidine & Gaviscon Advance, you might be surprised. Can your GP give you some analgesics for your pain?
I am sending hugs to you. I don’t have all the answers for you but want you to know we care about your struggles. I use xylimelts at night for sleep and during the day. Initially, I hated them but forced myself to use them. I did get use to them & find they help. I have the reflux problem and take 40 m g of nexium daily. I have been on it for years. Do you have a rhuematologist? Plaquinal might help for some of your pain. I was diagnosed with Sjogrens in April(of course, have had it much longer). I feel your pain because different symptoms pop up frequently. It is hard learning to adjust to it all. There is lots of support on this site. I am sure you will hear from others with more suggestions.
hi. unfortunately i relate to much of what you wrote. just when i think ive had the worst symptom EVER, i am graced with a new one. thankfully, i have only had the burning mouth a few times, but it was truly awful. woke up a few times with a “scalloped (sp) tongue”. gross! those of you that have not have the pleasure of it is when your tongue lays on your teeth all night with no saliva, so you wake up with tooth imprints on your tongue. hurts very much. for me, joint pain takes a back seat to having trouble swallowing anything including water, eternal “gack” in my throat. so i really do want to support all of us with this. it can be much more than dryness. things people take for granted. as i did in the past. i feel like hell most days and i also want to cry. its godawfull! there i said it. i am sad for us all. there is hope but i too feel like hell and also want to give up. worste symptoms ever. i wish you all will feel better.
Hi donna57006
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: Dealing with Suicidal Thoughts: Where to get help, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you’re going through and will be able to help.
Kindest regards
Patient
Donna, I’m so sorry you are going through so much, I can relate to so much many of your Sjogren’s issues that my heart just aches for you. The tongue, the swallowing, the facial neuophathy and that’s just one small area where you are trying to preform so many day to day, ALL day, every day, life sustaining functions!! Who would not get absolutely sick and tired of that but then add in all the other symptoms i.e., the emotional exhaustion and of course it’s overwhelming! I have been completely over it many times and will be again then I will reach out just like you are because I know that I am not alone and neither are you.
I alternate Biotene and Sensedyne toothpaste to help control the pain and dryness from brushing my teeth. I also use the melts and Lubricity spray. When I got nowhere with my gastro drs 2 years ago I researched autoimmune diets including LowFod and found that those changes along with medication helped a lot of my issues. This really shows when I deter off of my meal plan which, of course I have done LOL.
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
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 have only been diagnosed since april of 2017, so rather new to this, but i have had weeks and some months almost symptom free. I tend to start to flare up if im not sleeping or something stressfull happens. i eat pretty healthy, but havent yet had to make any dietary, significant changes. i take plaquinil and vitamins and antidepressant and sleep meds. for awhile i was only getting 1-3 hours. thankfully dr. uped the med and i am getting 7-8. not necissarily my life plan, but its helping me greatly in order to get stronger. so for me, i have had periods symtom free and expect to have many more. there are some who occasionally are able to visit the site that share that they have been symptom free for years. I hope this gives you hope. I know how horrible symptoms can be. sending lots of positive thoughts your way and to all on this site
I hope today was a better day for you. I know lyrica, cumbalta or gabapentin are medications used for neuropathy in your extremities. I wonder if it could help facial neuropathy? You probably are already on e but mention it just in case.
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
Hi Chris, thank you for your comment. I have never been symptom free mostly in my lower lip. Yes, I do have facial neuropathy which is most likely what is causing the terrible pain. I am on pills to help me sleep and I will not take plaquinil due to the side effects. I take vitamins and try to eat gluten free. Most of this is from nerve damage but it continues to get worse with aging and with oncoming autoimmune diseases. Blessings, donna
I have already tried all of the meds you mentioned and I do have facial neuropathy. Nothing has helped and the meds make my mouth even drier. Blessings, donna
I am sending healing energy to you. I wish we had suggestions to help you. I do find it helps to know you are not alone. Sjogren’s does like to kick our butts. Chatting to others and reading conversations helps me. We are all here for you.
hi Donna, i fully understand your misgivings about taking plaquinil, but id encourage you to reconsider. i read all about it and was very unsure if i would take it because of the side effects. i thought and prayed about it and decided to give it a shot. i take 200 ml a day. since you are absolutely miserable i would seriously consider plaquinil. just something to think about. for me the only possible side effect i may have had was thinning hair, but now my hair is normal. i have taken it now for a year and a half. hope you feel better soon