TMJ: Overview, Causes and Treatments (What Has Helped me Most!)

A few months ago, I was asked to share my TMJ story by a reader whose friend suffers from it too. She wondered what treatments I have undergone and how well they worked for me. If what I have tried and what I have learnt can help anyone, then I am very happy to share.

Firstly, what is TMJ? TMJ stands for Temporomandibular Joint (disorder). It is a disorder of the jaw muscles and nerves, usually caused by injury or unusual jaw alignment/growth. The main symptoms are facial/jaw pain, referred neck and ear pain, clicking/popping of the jaw, inability to open your mouth very wide, headache and/or migraine and some people get buzzing or tinnitus in the ears.

tmj

My personal main symptoms are jaw and neck pain, inability to open my mouth very wide, neck pain and tension headaches. My jaw and neck muscles are extremely tough, tight and painful. This also refers to and affects my back. TMJ can be caused by many different things, but mine is because my vertical jaw bone on the left has grown slightly longer than on the right, throwing my whole jaw out. You may have noticed in photos where I’m not smiling, that the lower part of my face is completely skewed to one side! I also grind and clench my teeth at night.

IMG_20150511_180032    You can see in this photo how my jaw skews to the right.

I will briefly discuss what treatments I have undergone and how much they helped me, in case they can help anyone else.

Night mouth guard

After being diagnosed with TMJ, one of the first treatments I received was a mouth guard to wear at night. The dentist made my first guard, by taking an impression of my top teeth and making a plastic mould to fit exactly onto my teeth. This first guard was really uncomfortable – it was made of a very hard, inflexible plastic material which rubbed my gums and hurt to wear. As it was for the top row of teeth, I also had problems keeping it in properly through the night, as it would loosen and drop down. I usually woke up and discovered I had taken it out during the night without consciously realising!

My next couple of mouth guards (I had to have a few made as my teeth/jawline had moved) were made by the dental hospital and were much more comfortable. They were made of a much softer, more flexible material and did not rub my gums. I would recommend you asking for this kind of night guard if you are prescribed one (or if you already have one that is very uncomfortable). The hospital also made the guard for my bottom teeth, which made much more sense and stayed in more securely through the night.

Overall, the mouth guard did little to relieve my pain. It did stop me damaging my teeth when I ground them at night but I would tend to clench my teeth together during the night, which is probably not very good for the jaw.

Physiotherapy

I have had many sessions of physio with different physiotherapists. When you initially see a physiotherapist, they will do a detailed assessment of your particular issues, taking a lot of medical history and information. They will generally do a physical assessment and check your range of movement to see if it being affected.

Generally after the first assessment, the physiotherapist would do a small amount of manual work (it feels like they are just very lightly pressing into certain areas and applying a little pressure – they will always check it is not painful for you). They will also teach you some exercises to do regularly at home, and usually provide you with print-outs to remind you how to do them, as it is important to do them correctly, otherwise they may not work or could even aggravate the issue.

After the manual work (way lighter and shorter than massage), I would generally feel a bit worse for the next couple of days. It would tend to trigger more pain for the following couple of days and then I would usually feel a marked improvement for up to a week.

Overall, physiotherapy wasn’t the full answer for me, but it did provide me with some tools to keep on top of the pain. I still regularly practise the exercises I was given, to keep my masseter (jaw) muscles loosened. I also understand much more about my anatomy and how one set of muscles affects another set that you wouldn’t expect! I think physio is well worthwhile, at least just to understand the anatomy of your TMJ and what you can do to help yourself at home.

Ultrasound

Ultrasound is, as far as I can tell, not something that is widely used to treat TMJ. It wasn’t suggested to me for a long time, until I went to see a physiotherapist at the hospital. She said she had recently treated a TMJ patient with it and they had reported really good results. She said she couldn’t guarantee anything but asked if I would like to give it a try. I of course said yes!

We did a course of weekly ultrasound for around 6 weeks and it really reduced my pain levels. She started at quite a low level and increased it weekly. Basically, it is very similar to the way ultrasound is used on pregnant women! They just put lubricant gel on an ultrasound wand and hold it still for a minute at a time around the jaw area (or wherever you have the most pain), increasing the wave frequency as and when. You feel nothing at all, except the cold gel on your skin. There is no pain or discomfort involved, and personally I didn’t have increased pain levels for the following few days like I do with manual physio. I just felt an almost immediate improvement in pain levels.

The only downside to this treatment is that you have to have it very regularly (preferably weekly), as the effects won’t last very long. So having to attend the hospital weekly whilst you are working is of course pretty inconvenient.

Overall, ultrasound is the second most effective treatment I have tried and I would highly recommend asking around to see if you can find an NHS physiotherapist who can provide it.

Medical Botox

Botox treatment is the best TMJ treatment I have tried and I am still currently having it around every three months, on the NHS.

The main question I get asked is will it get rid of any wrinkles..! Just to clarify, the medical botox is used in a very different way to cosmetic botox. Although it is the same substance, it is injected much more deeply into the muscle. It is important to note that the use of botox to treat TMJ is still currently off-label and not FDA approved. Your consultant will make the choice as to whether they are comfortable offering it.

I have the injections around every 3 – 4 months. We have experimented a bit to see what helps the most, but generally I have an injection into each temple (to help with the headaches) and one into each side of my jaw (around the hinge area). It isn’t painful – the first time it was a bit uncomfortable and sometimes it makes kind of a crunching sound (yup, really!) but it has never really hurt. It feels similar to getting a vaccination. There is sometimes a tiny amount of bleeding afterwards but nothing big at all – they often just put tiny round stickers over the injection sites until you get home.

You will be asked to sign an agreement to say you have been warned of the risks (infection, allergic reaction etc) but they are very uncommon and I have personally had no side effects. The leaflet says that sometimes you can feel a bit flu-like after the injections, which I would say I did ever so slightly the first couple of times but not anymore.

Overall, I feel like I would really struggle to manage my TMJ pain without the botox treatments. The pain is much more manageable and my jaw opening is wider, as the muscles are more relaxed and less bulked up. I would recommend looking into this if you are really struggling to manage your pain but wish to avoid surgery.

Painkillers and pain-blockers

I have taken over-the-counter painkillers for the TMJ pain (paracetamol, ibuprofen, low-dose co-codamol), which personally did little to control my pain. I currently use Tramadol and prescription co-codamol (although these are mostly for my fibromyalgia), and these help a reasonable amount, although pain is still often present.

Years ago, I was prescribed Nortriptyline, which is meant to block pain signals to the brain. Again, this was prescribed off-label as it is actually an antidepressant (although at higher doses for that). I found this pretty effective and was on it for years. I had to come off it for various reasons (it couldn’t be taken with another medication I was on).

I have recently started taking Amitriptyline (again for the fibro mainly but it should work on the TMJ too), which is used in the exact same way as Nortriptyline (and from the same drug ‘family’) but is a slightly newer and supposedly more effective drug. I am still working out my dosage of this so cannot say whether it is helping yet but I will report back on it.

Overall, painkillers and signal blockers are definitely helpful in the day to day management of TMJ pain. I don’t think they should be taken as the total solution – they should definitely be used in conjunction with physio exercises/stretches etc to effectively manage the condition rather than just masking it.


If you have any questions about what I have discussed, do let me know in the comments box or on social media. I will do my best to answer anything and provide as much information as possible!

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9 thoughts on “TMJ: Overview, Causes and Treatments (What Has Helped me Most!)

  1. LetGlow By Amy O says:

    I have been using a mouthguard, AD medication and painkillers for my tmj but still suffer and the next thing I have been offered is medical botox. I am at the stage where I would try anything to get rid of some of the pain but I am absolutely terrified of the idea of a needle in my mouth as I tend to faint when having injections or doing blood tests. I am just wondering how long the needle is in for and where exactly it is applied, when you say temples do you mean at the side of the face from the outside as I was always under the impression the injections would be given right at the back of my gums. Any advice would be appreciated! I need anything to stop it, was paying a fortune on dental work until I had my mouthguard made properly! Ao x

    • Katie Cupcake - Life with ME says:

      Hi Amy! I would absolutely recommend the botox, my tmj is so much more bearable now. They tend to do them in different places according to your pain, but I’m sure it’ll be external as they’re targeting the muscles.

      Mine are to the outside of my jaw and outside temples. They’re in for 3-4 seconds max. It’s over in a flash! It’s so much less horrible than you’d imagine, don’t worry! Xx

  2. Heidi says:

    Hi Katie, I get some similar symptoms but have arthritis in the neck so tension headaches mainly due to that (&fibro). I do get a clicky jaw & tinnitus tho, thinking of going back to Amytriptylene to help as really suffered the last several moths with my pain.
    It’s definately a constant struggle trying to manage our pain!
    Spoonie hugs, Heidi x

    • Katie Cupcake - Life with ME says:

      Hi Heidi! Sorry to hear you’re suffering too. Arthritis in the neck sounds rather painful! Amitriptyline is so helpful, I’m still in lots of pain but it helps it be a little more manageable.

      I’ve found(medical) botox the most effective thing for my tmj so far. Yep it’s all fun and games being chronically ill isn’t it? Lol! 😁 xx

  3. Nia Patten says:

    I’m a dentist, it’s really interesting to hear the patients view on TMJD treatment. The problem I have is having nowhere locally to refer to that will perform the therapeutic Botox. The funding isn’t there. X

    • Katie Cupcake - Life with ME says:

      Oh really? How interesting! Thank you for reading this 🙂 Unfortunately the only thing that really helps me at all is the botox. I’m told I could consider surgery, but they’ve said there’s no guarantee it’d work and I could very easily end up in more pain, so it’s not really a risk I want to take! Such a shame about the lack of funding in your area xx

  4. Samantha says:

    I go to acupuncture once a week, physical therapy once a week and TMJ massage once a month. Sometimes acupuncture helps and sometimes it doesn’t. The physical therapist also does dry needling in addition to exercises and very light massage. I don’t know if they would help anyone else to try those things but it helps me to try and keep my pain within bearable levels along with IB Profen.

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