When Your Jaw Stops Cooperating: A Health Update with ME CFS, Fibromyalgia and TMJ
Living with chronic illness means medical appointments quietly become markers in time. Weeks or months pass waiting for them, and then suddenly you are sitting in a consultation room trying to summarise a complicated body in a few short sentences.
I recently had another appointment with the TMJ surgeon who will be treating my jaw problems. Appointments like this always come with a mixture of relief and uncertainty. Relief that someone is actively investigating what is happening, and uncertainty because the more complex your health becomes, the more layers there are to explore.
This appointment resulted in several new investigations being requested. I am now waiting for appointments to come through for an MRI of my brain and nerves and a CT scan of my jaw. Alongside that, I had full blood tests and X-rays done as well.
The aim is to narrow down what is actually causing my jaw to lock so severely.
Why Does TMJ Cause Jaw Locking?
Severe temporomandibular joint dysfunction can cause the jaw to lock or significantly restrict how far the mouth opens. In my case, my jaw currently opens only 17mm, which makes eating, speaking, and even yawning difficult - and extremely painful. My TMJ surgeon has requested both an MRI of my brain and nerves and a CT scan of my jaw to investigate whether the restriction is caused by joint problems, nerve involvement, or severe muscle spasms linked to conditions like fibromyalgia.
When Your Jaw Stops Opening Properly
At the moment, my jaw opening is just 17mm.
For context, a typical jaw opening is usually around 40 to 50mm. So when your jaw only opens to 17mm, everyday things become far more complicated than most people realise.
Eating requires planning. Foods need to be softer or cut into smaller pieces. Biting into something simple like a sandwich becomes surprisingly difficult. Even speaking for longer periods can start to hurt.
TMJ problems are often described as jaw pain, but severe restriction affects much more than that. When your jaw stops opening properly, it quietly alters everyday routines in ways most people never think about.
Yawning becomes painful. Dental appointments cannot go ahead. Meals take longer. Small things that normally happen without thought suddenly require effort.
Living with chronic illness already involves constant adjustment. When something like severe TMJ dysfunction develops alongside conditions like ME CFS, and fibromyalgia, it becomes another layer the body has to manage.
The Appointment with My TMJ Surgeon
During the appointment, the surgeon carefully examined my jaw movement and the surrounding muscles. It was immediately obvious how restricted the opening has become.
The CT scan of my jaw will allow the temporomandibular joint itself to be examined in detail. This can reveal structural problems within the joint that might be contributing to the locking.
The MRI of my brain and nerves is being done to rule out neurological causes that could be affecting the muscles and nerves involved in jaw movement. With complex chronic illnesses, symptoms rarely exist in isolation, so doctors often need to investigate multiple possibilities at once.
Living with ME CFS and fibromyalgia means the nervous system already behaves differently. Pain signals, muscle tension and fatigue are often connected in ways that are not always easy to separate.
The scans should help clarify whether the restriction is coming from the joint itself, the surrounding muscles, or something affecting the nerves that control them.
Muscle Spasms Beyond My Jaw
One of the things the surgeon noticed immediately during the appointment was how significant the muscle spasms have become.
They are no longer limited to my jaw.
The spasms now affect my face, my neck, and they even run down into my arms. It is something I have been aware of for some time, but seeing it happen during the appointment made it clear that the muscles are under a huge amount of strain.
Anyone living with fibromyalgia will recognise the strange behaviour muscles can develop. They tighten unexpectedly, twitch, or spasm without warning. Sometimes they feel painfully tense, and other times they simply refuse to relax.
When this kind of muscle behaviour affects the jaw and surrounding muscles, it can worsen TMJ symptoms significantly. The jaw becomes tighter, movement becomes restricted, and the whole area begins to feel unstable.
Muscle spasms around the jaw can also pull on the neck and shoulder muscles, which may explain why the tension has spread into my neck and arms.
With chronic conditions like fibromyalgia and ME CFS, the nervous system can become hypersensitive. Muscles react differently, pain signals amplify, and the body can struggle to regulate tension properly.
Medication Changes and the Adjustment Period
Because of how severe the spasms have become, my surgeon decided to double one of my medications while we wait for the scan results.
The aim is to calm the muscle activity and reduce some of the tension affecting my jaw, neck and arms. It is essentially a temporary management plan while the investigations are ongoing.
Of course, medication adjustments rarely happen quietly when you live with ME CFS.
Right now, I feel completely high as a kite.
The increased medication has left me extremely sleepy and foggy. I am sleeping through the night and then sleeping again for large portions of the day. And currently, I’m massively struggling to stay awake for very long at all.
Fatigue is something I already live with because of ME CFS, but this is a different kind of exhaustion. It feels like the usual chronic fatigue has been layered with medication sedation.
The dizziness has been significant as well. I feel unsteady on my feet, and my balance feels unreliable. Walking across the room sometimes feels surprisingly difficult, which means I have mostly been confined to bed while my body adjusts.
This is something I have experienced before.
When my medication was drastically increased previously, it took a couple of weeks before my body settled and accepted the new dosage. During that time, the sleepiness and brain fog were overwhelming.
Eventually, things stabilised, and the medication began to help rather than overwhelm.
So for now, I am reminding myself that this stage is temporary.
What Doctors Are Currently Investigating
Living with complex chronic illness often means symptoms overlap in ways that are difficult to untangle. My TMJ surgeon is trying to narrow down why my jaw has become so restricted and why the muscle spasms have spread beyond the jaw itself.
The investigations currently include several possibilities.
Structural TMJ problems
The CT scan of my jaw will show whether the temporomandibular joint itself is contributing to the locking and restricted movement.
Nerve involvement affecting the jaw and face
The MRI of my brain and nerves will help rule out neurological causes that may be contributing to the spasms affecting my jaw, face, neck and arms.
Muscle dysfunction linked to fibromyalgia
Fibromyalgia can affect muscles throughout the body, sometimes causing tension, spasms and chronic pain.
Nervous system dysregulation with ME CFS
ME CFS affects how the nervous system processes signals, which can influence fatigue, muscle behaviour and pain levels.
At this stage, the goal is simply to gather information so my medical team can decide the most appropriate way forward.
Waiting for Answers
Waiting is something chronic illness teaches you repeatedly.
Waiting for appointments. Waiting for referrals. Waiting for test results. Waiting for medication adjustments to stabilise.
Right now, I am waiting for the MRI and CT scan appointments to come through while my body adjusts to the increased medication.
In the meantime, my focus is simple.
Rest.
Hydration.
Patience.
Living with ME CFS, fibromyalgia, and TMJ dysfunction means accepting that sometimes life temporarily becomes smaller. Days slow down, plans pause, and the body takes priority.
From the outside, it may look like very little is happening.
But internally, the body is constantly working to stabilise itself.
I am hopeful that once my body adjusts to the medication and the scan results come back, we will have a clearer direction for what comes next.
For now, I am doing what chronic illness has taught me many times before.
It has forced me to my bed.
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, TMJD, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
You’re not alone here. You’re welcome to stay as long as you need.
Frequently Asked Questions
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Fibromyalgia can affect muscles throughout the body, including the muscles around the jaw, face and neck. Muscle tension and spasms are common symptoms, and for some people this can make TMJ problems worse. In my case the spasms have not just affected my jaw but have spread into my face, neck and sometimes my arms, which is part of why my surgeon is investigating things further.
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A normal jaw opening is usually somewhere between 40mm and 50mm. When the jaw only opens around 17mm it is considered severely restricted. This can make everyday things like eating, yawning or speaking uncomfortable or difficult. My TMJ surgeon is investigating the cause of the restriction to see whether it is related to the joint itself, surrounding muscles or possible nerve involvement.
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An MRI allows doctors to look at nerves and soft tissues in much more detail. Because my symptoms include muscle spasms affecting my jaw, face, neck and arms, my surgeon has requested an MRI of my brain and nerves to rule out any neurological causes that could be contributing to the spasms.
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ME CFS affects how the nervous system regulates energy and signals throughout the body. Many people with ME CFS experience muscle pain, tension or unusual muscle behaviour. When this overlaps with conditions like fibromyalgia or TMJ dysfunction, symptoms such as spasms or increased pain can become more noticeable.
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When medications that affect the nervous system are increased, the body sometimes needs time to adjust. In my experience this can mean feeling very sleepy, dizzy or foggy for a period of time before things settle. The last time my medication was increased it took a couple of weeks for my body to adapt.
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Rest is essential when living with ME CFS because pushing through symptoms can trigger post exertional malaise, which can worsen fatigue and other symptoms. When my body is adjusting to medication or dealing with increased symptoms, I try to slow down as much as possible and give my body the time it needs to stabilise.
