Chronic fatigue syndrome and Jaw pain

[asni02]

Hi there, I haven't been diagnosed with ME yet. Once, I went to see GP with a flare up and she told me that I may have ME. She actually printed out the details of its symptoms for me. However, my usual GP still wants to rule out other possibilities. I decided to join the forum as my jaws are killing me at the moment. And, I feel very tired after eating my meal. I have used heat pad, cold pad, painkiller and gently massaging my jaws but nothing is working. The pain is just gnawing at me. Any suggestions as what to do?

[Flatbattery]

Hi - I have ME but the jaw pain might caused by something else other than ME. I also currently have jaw pain but developed it after having a tooth extraction in December. I was told by dentist that I had an inflamed muscle in my jaw and then by a doctor it was TMJ. I was told to eat softer food and given jaw exercises to do which seem to be helped. Another cause of jaw pain is if you grind your teeth during the night in which case wearing a mouth guard at night might help. You can usually tell if you grind your teeth if your jaw pain is much worse when you wake up in the morning. If you feel anxious a lot it can also give you jaw pain as you might be clenching your teeth together during the day. Try noticing how your jaw feels during the day and letting your jaw relax and keep your teeth slightly apart. Guided relaxations can be very helpful for stress and muscle relaxation.

[asni02 in reply to Flatbattery]

I have been diagnosed with TMJ by my dentist. I have been examined by the dentist and there is no wear and tear due to grinding of teeth. I have got a referral but it will take a year long. However, the pain is unbearable though I only had cereal for breakfast. I will definitely have a look at and try guided relaxation. And yes, trying to keep my jaws apart.

[Plen]

Hi - when I first got the virus, which triggered PVFS I experienced very painful jaw pain. I have not experienced it since. It was different to TMJ pain, which was caused by gritting my teeth when stressed. At the time I thought this was a very strange flu symptom. I do not know if it was the flu virus, my reaction to the flu virus or ME. ( I'm going to use the term ME for ease of reference).

You need to work out if it is TMJ pain. If it is - do whatever you need to do to stop clenching or grinding your teeth. It will then go.

If it is ME related pain rest up. The best thing I have discovered is rest until all your symptoms have reduced to near gone. This is really hard if you have responsibilities, but you really just prioritise your health. I had to be in bed over a week to get to this stage and it nearly bored me to death. Then get something to measure your steps. I discovered that my symptoms started at around 1500 steps and critical at around 3000. This is when you listen to your body and stop. I now live within these limits, whilst testing them sometimes to check for improvements. I'm nearer 4000 steps now.

I honestly believe PVFS / ME was triggered by a combination of factors, which made the conditions perfect for developing the illness. The foundation was a ton of underlying stress the second was being run down the third was getting the virus the fourth was doing too much whilst ill and the final straw was more stress piled on top again whilst I was down with flu. My body just turned around and said no more!

My advice

- Treat any underlying stress

- Ask for help

- Live within your energy limits

- Get lots and lots of rest

- Do stuff you enjoy within your limits

- Don't give up hope and stay positive

- eat as healthily as you can - I always try to have some probiotics everyday (just in case the hypothesis that it is linked to gut microbiome is correct)

- accept the condition (This is tough!), but life is easier once you accept what is

- My personal belief is the condition is caused by your body remaining in virus fight mode - so do whatever you think will convince your body that it no longer under attack. Meditate and visualise yourself well. It's worth a try at least!

- I've tried all kinds of supplements and I'm not convinced any of them help. I'm more convinced it's a system malfunction that needs treating not loads of supplements, which seem to be water of a ducks back in my case. Other than vitamin D if you are house bound and not getting sunlight, which leads nicely onto the next point....

- I found daylight helps your well being if you can get out into it. Maybe go to a moderate sunny climate to get some rest and relaxation. This will all depend on if you have particular problems with your temperature control though. I found 20 degree heat really helped ease the pain!

On a positive note and to stand up for the NHS medical profession. My doctors has provided a very good level of care and dedicated a lot of time to helping me deal with the illness. They have always been sympathetic and taken the condition seriously and most definitely have insight into how devastating this illness is. They just don't know exactly what causes it and how to cure it, but they are human. We can't put an expectation on the medical profession to know everything! There is some good hypotheses being tested and proved at the moment so it's looking like one day we will have a test for the condition and hopefully this will lead to an effective treatment.

Take care xx