Hello am new here and wonder if anyone has these symptoms? It all started just over one year ago now when i had 3 teeth extracted by sedation method. When i started to go through recovery process i suffered pain in jaw and just put this down to having the number of extractions. I then moved house a few weeks later and didn't get a dental checkup until nearly 6 months later. Since having my check up that found no dental procedures required from my X-rays i became concerned as was my dentist because of restrictions to not being able to open my mouth to its full without pain, she then referred me to the hospital and finally i have my appointment next week! The pains are so varied the whole of my jaw, side of face including cheeks, my throat, neck, migraines regular, pains around my sinuses, and a weird sensational stinging pain at the back of my head so much so that my hair stings when touched! All these symptoms are worse on the most painful side of face, i have lost over half a stone in weight probably due to lack of eating because i cant 'bite' or 'chew' without pain!

The doctor put me onto sleeping pills which have stopped working and i cant sleep without pain in my head and face when on pillow so end up tossing and turning all night now! The doctor agreed with me (i googled my symptoms) saying he is convinced its TMJD! What i am more worried about is that nothing can be done to fix this! Has anyone come through this please?

Update from my hospital visit folks!

It is TMJD after having X-rays the Dr is convinced by my symptoms and the results of examination but to make sure she has organised an MRI so that she can get a clearer picture than with the X-rays. So should get an appointment for that in 4 weeks time i have then got an appointment in 6 weeks time to go back to see hospital for my results of the MRI. The hospital dr gave me some gentle mouth exercises to do until we meet in 6 weeks time. When i came out of hospital i said to myself 'yes, i was right!' So although i am still in pain i feel i am starting to get some answers, so will update in 6 weeks time after next hospital appointment folks!

16 Replies

  • What's TJD please suzey X

  • Hi suzey26j TMJD is temporomandibular joint disease, and very nasty it is too!


  • Thanks bluebell. Suzey X

  • Hi Bluebell i think the JD is Joint Disorder or Disease whatever it stands for its affected my whole self! Roll on 26th!!!

  • Thank you and now corrected, don't know where my brain is today!

  • Hello the only way i can eat is to eat soft foods yes, and it has to be cut into thin strips so that i can pop it into the small gap when i open my mouth and I basically have to suck the food until it dissolves! Hospital department is Oral and Facial Surgery Unit and letter says to allow 2 hours as it may include theatre pre-assessment also. I know i don't grind my teeth at night as that would have been picked up at dentist X-rays. It was dentist who referred me after my check up. If i wear even a hat or hoodie and it touches scalp or face it stings like mad so hope they don't suggest that!

  • What a terrible way to be left. Did you go back to dentist and tell them your after effects? I really think you now need to see a neurologist, my son -in-law had this experience for ages after having his wisdom teeth out, he does have fibro and I think this process set off the TMJD, he ended up with an Endochrinologist (who sorts out the whole body of pain) but was told a neuro doc could have done the same. There are oral surgeons at some hospitals too who can all work together to sort you out, don't put up with it hun insist on a hospital appt. starting with neurology.

  • Hi Caz, Due to moving home in a few days after extractions i didnt get a chance to go back to dentist. Despite having a dentist phobia I opted to have 3 teeth out at same time because i knew it would take a while before finding another NHS dentist. My appointment at hospital on 26th is with MaxilloFacial specialist so hope that something can be done a year has taken its toll on my whole being! Thanks and hope your son is better now than he was?

  • Hello Tel542010 and a warm welcome to our friendly fibro forum where you can get advice, support, help and understanding, along with a chuckle or two to lighten the day.

    A wealth of fibro information can be found at our mother site including guides and links.

    It certainly does sound like TMJD, are you going to see a MaxilloFacial Specialist?

    My TMJD started after eating a particularly chewy roll, it became worse over several hours until I could barely move my jaw and had to speak through my teeth. I really thought I had disclocated it as the pain was so bad.

    Coincidently this is also the time I had my fibro diagnosis as the two often go hand in hand.

    I saw the specialist who offered me botox injections which I squeamishly refused!

    Your dentist can make a special plate which goes over your back teeth to stop any grinding at night, also to stop clenching your jaw. Some members have found that quite successful and may be an option.

    Mine flares up from time to time and I just have to wait it out, eating soft food, limiting talking and using a hot water bottle against my face.

    I also have occipital nerve pain which does sound like you are suffering from too, and yes your hair does sting doesn't it.

    I hope your appointment goes well and you get relief soon.


  • Hello i find that heat or cold makes the pain worse as i think i have tried all combinations of relief over the last year! My appointment on 26th is with the MaxilloFacial specialist at the hospital as they have a special department for this i am glad to say. It does say on the appointment letter to allow two hours as i may need to go to Preassessment prior to operation but have no idea what that will entail! I can't even flipping well yawn and cleaning my teeth is awkward especially the insides of the front lower ones but i use a floss stick to try to avoid scale building up as i have a dentist phobia hence the extractions with sedation! I must admit i was petrified that i was going to need some horrendous dental work like root canal filling, but deep down didnt feel any pain in anywhere in particular just pain all over face etc so was really confused after those X-rays i can tell you, although relieved too i couldn't understand what was going on, i have even begun to think its all in my head! Although i know its not its so hard to socialise. My food is cut up into small thin strips that just fit into the small gap and then I usually suck the food until it dissolves and then i can swallow, which also hurts! The doctor did put me on antidepressants to help me relax and sleep but that didn't help either so went back and he prescribed the sleeping pills but have given up with them now too!

  • Hi my daughter had that although her symptoms were not as extreme. They offered her physio but she never went and now it's not bad at all . She barely mentions it these days .

    Hope u get some answers at ur appointment.

  • Sorry my mistake ! Totally different illness . I was thinking of tmj which is where it new nearly dislocated when opening ur mouth . Very painful too .

  • Get a mouth guard for night time from the chemist. You need to do tmj excercises to loosen the muscles up.....see video below


    Sometimes your jaw can click out of place and that's quite painful. Sometimes loosening up your tense jaw muscles can allow it to pop back in.

    Another thing you can do is put a warm compress on the side of your head that is sore. Also look at the pillows you have on your bed, sometimes sleeping with one soft pillow and a firm pillow beneath with help.

    See your dentist they can custom make mouth guards for you....

    TMJ syndrome can be very painful. I have it. I manage it with excercises, mouth guards, painkillers and heat packs. The pain is unbearable at times.All of these things work really well. You have to start managing the stiffness in the jaw as soon as it starts to feel tight.

  • Hi Tel542010

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so truly sorry to read of your suffering and struggling my friend, and I agree completely with NurseGladys123 as it could be TMD or it could be some other kind of damage?

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you


  • You poor thing, that sounds absolutely horrendous for you.

    I've never heard of TMJD but I wish you all the best and pray for the pain and discomfort to ease and preferably disappear all together.

    Love and hugs xxx

  • Hi

    I'm so sorry that you are suffering this awful pain.

    In the past i have been prescribed a high calorie, full nutrient drink called Forte Juice. It's supplied in a juice box with straw or those little bottles that have the friendly bacteria in. Either way you should be able to drink it through a straw. They come in various flavours and allow you to get all the vitamins and minerals you need to keep up your weight and keep you strong. Ask your GP they should be able to prescribe them, or suggest other options to help you.

    Or you might try smoothies or other healthy fruit and vegetable drinks.

    I do hope that your appointment sheds some light on the cause of your condition, gives you a dx and provides the support and help you need for the future.

    Gentle hugs xx 🌸🌺

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