Jaw, tongue pain & swelling

[Pink]

When I get very exhausted my jaw hurts & feels like its sliding forward; my tongue feels swollen too.
Then it gets hard to breathe. Sometimes my chest feels tight as well.

Happens when I'm sitting or standing or lying down.

Is this cfs related? Tmj? (I do have tmj for years but this seems worse than regular tmj) Something else?
My dentist has no ideas.

 

[WinterWren]

I experience the jaw pain and chest tightening (mine is mild tightening/soreness) but haven't noticed tongue swelling. I think mine is cfs related because I've heard others describe similar experiences... and because of the connection to PEM.

I spent a long time seeing special dentists about tmj and the conclusion I came to, over years, is that it's the PEM causing my tmj to be a bit more irritated but the tmj is not the big problem. My dentist pointed out that the main muscle (right in front of the ear) that should be very sore with tmj problems, is only ever mildly sore with me. The rest of the jaw gets much worse and it's when I'm very exhausted, not necessarily first thing in the morning like it should be if it was due to tmj clenching/grinding at night.

But that's just me. The current theory I'm leaning towards is that lactic acid plays a big role in all of this.

 

[Shoshana]

I wonder about trigeminal nerve problems, being involved, @Pink .
Which I have, and was suggested by an eye surgeon, I had.

Is it usually equal in both sides of your face/jaws?

If it is sometimes more acute on one side, might indicate trigeminal nerve involved.

Does cool pack ease it at all?

Though, since its got some chest tightening with it, maybe not that.
@WinterWren seems to give some good ideas on this.

 

[Pink]

Very interesting @WinterWren & @Shoshana .
I assume its tmj bec the pain is in front of my ears; very strong pain and my jaws click when I chew.
Then it feels like my jaw is out of place, my tongue feels too big for my mouth; sometimes the pain goes down to my chest on the right side.

I guess if I ever get to a neurologist I can ask about trigeminal neuralga.
The thing Is I have so many various symptoms and I hesitate to mention them bec I'm afraid to seem like a hypochondriac. And every dr dismisses the ones that dont apply to their field.

 

[WinterWren]

I should have mentioned that my chest tightening and jaw pain didn’t always go together, the chest tightening only became noticeable this last year.

@Pink your description sounds a bit different then mine, but it definitely sounds like your tmj is aggravated. Have you tried a lot of tmj treatments like physio/message/appliances? They helped me back when mine was really bad but luckily I had more energy then for appointments. The good thing is that doctors/dentists are used to hearing about tmj problems so they’re less judgmental about it

@Shoshana good call about trigeminal neuralgia, i’ve wondered about this for myself too. It can also aggravate tmj problems and vice versa. And ME likely aggravates all of it...

 

[alkt]

just to add jaw pain specially when radiating out from the ear can be caused by pinched nerves in the neck which can also radiate down through the shoulder . I have had this problem for some years now I was hoping it was an ear or throat infection so it could be easily treated rather than being told it will resolve itself over time .

 

[Pink]

I had a night guard made by my former dentist but i kept feeling like it was hard to breathe and swallow wearing it.
My current dentist is a good dentist but doesn't really deal w tmj (at least acc ti his office staff).

My chest pain isn't always w jaw pain. And at times lately I feel like a tight band around my upper ribs.
I'm so tired of being in pain that cant be explained.

 

[Wolfcub]

@Pink I am sending you a gentle hug. You have so many pains and I wish I could take them all away from you.

I am supposing you have been for cardiac checks? If not, do get them just to put your mind at rest.

I can't get on with those mouth guard things either. I don't grind my teeth, but I do wake up sometimes biting down on my lip! And I have no idea how to control it. I know it has to be a subconscious tension of some kind. But wearing a mouth guard (yuck) It feels like half a truck in my mouth which doesn't help one bit.

 

[Dechi]

It sounds like myasthenia Gravis symptoms to me. Have you been tested for it ? There is a blood test you can ask your doctor to do. MG and ME have a lot of symptoms in common.

 

[Pink]

I thought myasthenia gravis has drooped facial features, no?
My dr thought some things point to Ms but I'm too scared to do more tests and get yet another no.
Thank you @Wolfcub . I did have ekg done it was good

 

[Dechi]

I thought myasthenia gravis has drooped facial features, no?
My dr thought some things point to Ms but I'm too scared to do more tests and get yet another no.
Thank you @Wolfcub . I did have ekg done it was good

Droopy eyelids, but sometimes it’s not that obvious. MS is one of the first things you should check. Don’t be scared, if you don’t have it, then it’s fine. You keep looking until you know what you have.

 

[Wolfcub]

Thank you @Wolfcub . I did have ekg done it was good

That is good news on one thing @Pink It;s nice to know that's OK

 

[Rufous McKinney]

All that happens to me cycling over a 24 day.the tongue swells , everything in there is swollen. the jaw clench. My jaw literally Popped out of its socket in July when I was REALLY sick with acute ME collapse. I sleep on my side, and try to put my hand there, to hold my jaw and take the pressure off. The tongue does not fit in the space. Look at the indents on the side. Its why I see Chinese herbalist. That jaw is co-mingled with all the sinus and ears and throat. I had TMJ blow up: over two days when I tried ZOLOFT, a most horrible experience.