So recently I had been feeling less pain. Still couldn't jog around the park or anything and still tired most days, but been able to get out of bed in the morning, no real stiffness, even been able to excercise without a backlash💃 Actually felt almost normal. No clue why the sudden change but was very grateful.
Was indulging in this joy, when I started noticing my mouth was feeling drier than normal. I have had occassional dry mouth in the past along with swollen glands in my throat. So at first I wasn't worried. Expected it to pass.
Except it hasn't. First my saliva dried up then the back of throat swelled up. I had to buy artificial saliva but it evaporates in minutes. Even so if that was it, I would still try to ignore it.
I started to experience strange sensations of my mouth and tongue being on fire or a feeling like something sharp like glass is in my mouth along with an intense prickling sensation. My throat is burning like crazy, inside it is dry, gritty and sticks together preventing me sleeping. Underneath my glands keep swelling up and then going down again. Any physical activity and they swell up again.
It is sheer agony. I'm not really explaining it very well. Feels like I have eaten hot chilli peppers along with sandpaper and a bit of tonsilitis on top. Tongue is painful and throat is excruciating but all looks well inside apart from this. Back of throat a bit red. Can barely speak because mouth is so dry. My lips are cracked. Eating painful but relies dryness temporarily. Have to keep drinking water and wake up to drink and use mouth spray.
Went private doctor as a quick one off. Suggested Sjogrens as a possibility. So went to my GP, saw a locum who said sjorgrens highly unlikely but did send me for a blood test for ssb antibody. Saw a private test on Blue Horizons for all SSA SSb and Anti La antibodies CRPand did it as I just wanted to be sure. Came back negative.
Googled symptoms and Burning Mouth Syndrome came up. Apparently it can be part of central nervous system sensitisation and can occur in people with fibromyalgia but im not sure whether its that or not. But some of the symptoms were tick box. I have thyroid problems so have no idea if thats what it is.
I am in such agony all day and all night i feel really depressed. I think this is finally the thin edge of my wedge. I had to take an exam yesterday I forced myself through it despite being in pain. I'm crying writing this. I dont think I can take anymore. If this is another fibromyalgia symptom that I will just be expected to put up with everyday then I feel like I want out. I can't see the point. I really don't want to live like this anymore.
Anyone heard of this?
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Alanna012
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Hi I haven't heard of this before but I have a dry mouth for years, and it's affected my appetite, everything tastes bland and like eating cardboard, like taste buds don't work. I am concerned how it's making you feel, maybe you go back to GP and say what you've put here and how pointless it's making you feel, is there another GP at your practice you can get a second opinion? Have you got a support network around to sound off to, do they know how it's making you feel. Remember Samaritan's are at the end of the phone. It's horribly feeling you're like your stuck in a nightmare. I admit I have had nights where I pray I won't wake up in the morning, then disappointed when I do, then I feel guilty because it's not fair to my Husband who is a great help and support, so I hope you have someone like there for you. It always looks darkest when in such pain & discomfort and already suffered so much in the past. I do use the Calm website, great tools on there for relaxation techniques, I have it on my mobile and to downloaded music on my earphones at night to relax me for sleep, recommend. Will pray for you, sending all my love & hugs🤗😇
Hello there , reading your reply I would ring the 111 service now , do not wait till after bank holiday get an appointment, write down everything, and tell the advisor how you are feeling right now , you are very low and help is needed, have you any members of family near you at the moment ? Like Sue has said we feel concerned ,normally the advisors are very good they will pick up how you sound and what your mood is like, a lot going on health wise, let us know please , go and dial that number xx
Oh you poor thing sounds awful l do so wish you a little better, l have not heard of it before. I do really feel the same as you right now, l have got a PIP ASSESSMENT got to go to PETERBOROUGH 6th June dreading it,my stress started straight away, enough of me l do really wish you a little better.x 🤔🤔
Just saw your post, got my PIP assessment on 6th June as well in Sheffield. Yes my stress levels gone through the roof, I felt so sick when I saw letter, couldn't eat anything all day. I suffer severe anxiety and struggle to mix with others at the best of times, I'm forever cancelling appointments because I cannot face whatever that day, silly really, of course I can't cancel this but my Husband will be taking me & hold my hand. Do you have support, someone to go with you. Have you read member posts on here with advice on how to prepare for the assessment. Good luck on the day, let us know how you go. Message me privately on my profile if I help in any way. Sending love & hugs 🤗👍
Thank you for your kind replies. I'm crying reading them.
I don't really have any support and don't really think I can cope much more. I hide a lot because I get tired of complaining to everyone. People keep asking how I am and I've run out of things to say. My once beloved husband left me a year ago shortly after my diagnosis and I try to hold myself together so my son doesn't get affected. He's doing his A levels. My eldest is also at university in Liverpool and I act like im ok when he comes down to visit so he doesn't feel pressure to move down.
I want to improve my own life but every time I try, the pain, fatigue etc gets in the way. I'm struggling with my degree...I could just about cope with the daily muscle pain, fatigue etc but now this...Its too much.
My doctors are not always very helpful and I had a bad experience a couple of weeks ago because I fell behind with a crucial piece of university work which is worth 40% of my degree and the doctor outright refused to give me a note even though I begged and explained what it meant. That was where I started feeling low, as I felt no one understands.
I might phone 111. Thank you for taking the time to reply, it means a lot.
Please do as the others have advised, and ring 111. If you have not already done so, please be totally honest with them and tell them how low you are feeling, and that there is no way you can cope over the bank holiday weekend. Often if you are seen by whoever 111 advises you to go to, they can fast track you to the appropriate consultant/department.
If that doesn't happen, make an emergency appointment with your GP, tell them how low you are feeling, be confident and determined and demand that you want seen by ENT urgently.
The only other thing I can suggest is visit your dentist as soon as you can get an appointment. Sometimes they can pick up on things or advise.
I hope you get some kind of help asap. Please don't let it linger on. xx
I’ve just read your post & the replies. They all give really good advice.
I have a dry mouth problem too but nothing on the scale of yours. My dentist has always supported me & given me different samples of sprays & toothpastes. One of the main problems is that your teeth need saliva. I have to use a high fluoride toothpaste (which I hate) & get it on prescription. Even so, my mouth can’t tolerate it at times & I’ve now found that Jason coconut or children’s toothpaste help. I also have Xerostom mouthwash, which I have to dilute, & Salivix pastilles on prescription, that help to produce saliva. Water seems to make my mouth worse but I mainly drink unsweetened coconut water. When my mouth is bad, I often just have a teaspoon of coconut oil & keep it in my mouth for as long as I can.
There are quite a few things I avoid now. I can’t drink anything over spicy or fizzy & although I love nuts (& do eat them) I just can’t get them out of my mouth!
Please seek help quickly & I hope you’ll soon get some relief. Nic xx
I felt the need to reply to you're message as a fibromyalgia sufferer as I too started to experience all your symptoms you're saying in your mouth about 6 months ago it lasted for about 1 1/2 months and then just disappeared but it comes and goes. I also get a metallic taste , it feels like I've eaten a bag of 2 pence coins.
It's definitely part of fibromyalgia.
Some people get it , some don't.
Although I would suggest asking you're doctor for a blood test to check for you're iron and b12 levels, that's what I was told by my dentist when I went to him when my mouth symptoms started, he told me it can sometimes be down to vitamins deficiency.
Mine wasn't it was definitely my fibromyalgia.
I'm so sorry to hear how low you're feeling and I completely understand, I too have been there a few times and like you I put on a front to the small amount family around me. It's hard I know but you're have better and brighter days, you must already be a strong woman to do all what you're doing now, I admire you , I couldn't do half of what you're trying to do
So give yourself a soft pat on the back and keep strong
I have a milder version of your symptoms. Frequently feel as if I have a sore throat, voice gives out, terribly dry mouth ( and eyes but that bit was diagnosed a few years ago) and sore mouth and lips. GP told me I had to see a rheumatologist for test for sjorgrens as not something they could do. She did offer some small tablets to suck but they didn’t really help so not bothered getting more.
I too have a thyroid problem in that I have a goitre and all the symptoms of hypothyroid but nothing shows in blood tests.
Sorry don’t have any answers can understand how sore your mouth feels.
Well, I found out that my water pitcher filter and bottled water may have intensified my burning mouth. I do get minor symptoms when under stress and anxiety. But since I stopped filtered water the burning is gone. No doctors, dentists, etc could diagnose the cause. I was almost done with living that way. So glad I figured it out. I am allergic to so many things . So new reactions are common for me. Try changing your diets. Medications, stress, job, bad abusive people.
Hi I have had problems along those lines extremely dry mouth, my tongue gets really sore, especially on 1 side ( can be left or right ), I also keep having nosebleeds, keep getting sores inside my nose and my hearing which as never been brilliant has worsened I am waiting for an appointment at ears nose n throat I hope you get sorted and find relief I think at times everyone feels as if they’ve had enough fibromyalgia is a cruel illness xx
I was diagnosed with Burning Mouth Syndrome by my dentist. I went to the GP twice who gave me antibiotics which made it worse. This is a symptom of menopause which I am menopausal. My dentist was amazing. I had to chew chewing gum and drink lots of water. My dentist rang my GP and then they took me seriously. My tongue, throat were both bright red, swollen, so dry I could hardly swallow, it was awful. I was panicking when I stuck my tongue out and saw it. Apparently oestrogen in the body produces saliva so in menopause I had hardly any so my body was responding in this way. I get flare ups when menopause symptoms are bad. But I know what it is. The gum and water did help alot. This is my story and I hope it helps. Look after yourself and I hope things get sorted soon for you.
Yes I have oral lichen planus which leads to sore burning mouth with large lumps...water doesn't always help but I found sugar free gum can help for a bit when my mouth is dry...fibro sucks
Although I haven’t had burning mouth, I looked dry mouth up in a Sjogrens Syndrome Foundation book I saved. Two different suggestions they had were: “Break a vitamin E capsule inside your mouth, especially before retiring for the night. This provides a protective, soothing coating that is unlikely to evaporate.” They even suggest sucking on large fruit pits (e.g. prune, peach).
I hope this is a temporary menopausal symptom as was previously suggested. I experienced dreadful breast pain during menopause but it came to pass completely after months. I hope your condition is more short lived. Take care, I am thinking of you.
Add: Another Sjogrens book in my library by Sue Dyson (who lives in Cheltenham England) states drinking grape juice can be helpful. Also sucking on frozen grapes. Her self-help book is filled with many suggestions for dry mouth. It says she herself suffers from Sjogrens.
Thank you for your kind suggestions and advice and sharing your experiences. It really helps calm my nerves. They kept me going on Sunday and Monday. I spent most of Sunday in tears.
My sister told me to take your advice and phone the NHS or put of hours doctor, but the thought of risking another dismissive doctor was just so stressful. I feel very stressed about doctors now after loads of bad experiences.
I'm at the Dentist now waiting to be seen hoping maybe she can give me some advice.
Hi, yes had and get similar. Also diag with thyroid/fibro. For me, making sure I get all of the r.d.a vitamins and minerals, having alkaline foods such as lemon juice and taking antihistamine works. Symptoms also correspond to vit/min deficiency/overdose, magnesium, B12 and vit D especially.
Dentist was very understanding and has referred me to hospital and told me to see her again on Thursday. She said she cannot say if its burning mouth syndrome or sjorgrens and she can't recommend me anything in case it causes problems or a reaction, as I'm also asthmatic. Not even a toothpaste until I get confirmation of a diagnosis. She suggested coating my mouth in natural yogurt in the meantime.
I stopped at the health shop and brought the vit E (thanks clarissa) along with a liquid multi vit. I have b12 and b complex already (although not always good taking it) I forgot the vit D!. It was not so bad this morning but since walking home it has started winding up again. I'm so sick of being tortured with it. I have already drank almost a litre of water and have a cup full of ice cubes, which work for about 2 seconds. This is so awful, sorry for being negative. I'm going to try to hang on to Thursday but I really don't think I can take another bad night.
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