So its been awhile since I've posted on here... So two days ago I had the worse pain of my life... I thought it was a tooth ache at first then it felt like my jaw was breaking... The pain then travelled up my face and down the side of my neck.. holy crap was that painful... I am still recovering I have inflammation on the left side of my jaw and it still throbs ... My doc said its TMJ.. I had a Rhumy appt. and I told him about it and he said the Lupus could be playing a roll and the fibromyalgia I have... Pain pills don't help just makes me feel high.. I keep laying next to my heater or putting an ice pack on my face... Has anyone else have this problem?
Hi Crystal yes, I have had bouts of tMJ it hurts. ALOT!! I went to a physical therapist who helped release the tight muscles . after going I now can release the tight muscles on my own. I highly recommend physical therapy. 
I have TMJ and also something called Trigeminal Neuralgia, which I have now learned is not an uncommon neurological issue for lupies to have. TMJ is all jaw-related, and is often caused by grinding your teeth and/or clenching your jaw at night - which I started doing after my fibro and all my pain-causing symptoms began (it’s one of the things, along with the meds, what has trashed what once were my almost perfect teeth!)
Trigeminal Neuralgia is caused by pain in the trigeminal facial nerve, which originates near the ear and has three branches that cover the area from the ear, under the eye, down to the jaw. Some people experience TN as lightening flashes of excruciating pain, almost like electric shock, and for some (like me) it’s constant pain, but it’s known in medicine as one of the most painful conditions in existence - and I can vouch for that. I just had one of my worst bouts with it in the past 3 weeks, and it ended up taking my first ever oral prednisone (which I have aggressively resisted for years) to kick it to the curb! I hated every minute of the pred and the after effects, but at least it worked. At its worst, I’d take unmedicated childbirth (& my daughter was 10 lbs.!) over a bout of TN any day.
One way to tell whether yours is TMJ or TN would be to try a bite plate - it’s a soft thing you mold to your teeth and keep in your mouth at night to prevent the clenching & grinding. Your dentist can make a custom one if he thinks you are grinding - he can tell- or you can find one (not quite as good, but enough to help) in a drug store or online. If some time sleeping with the bite plate helps, it’s probably TMJ.
If you continue to have trouble, I would strongly encourage you to see a doctor again, and mention the possibility of TN, since it is another lupus-caused neuritis. My neurologist diagnosed and treats my TMJ and TN both. Whichever it is, you’ll want to know (even if it’s something else, you need to figure this one out)and find a treatment that works for you. This kind of problem can impact your nutrition , your sleep, your stress levels, and therefore your overall health more than you realize if not treated aggressively. Please keep us posted, and feel free to PM me if you have any questions about my experiences. GENTLE hugs!
Hi Crystal.....Yes....and mine was Stones...jaw stones..like kidney stones except in the jaw...alot of Dr.'s just don't get it but I happen to have went to one after going to 2 other's that finally found the problem...Oh it is so painful...I know how it hurts..she told me that if it doesn't stop they may have to have surgery to get the stone out...she told me after it dies down to start eating something sower...hope this helps..anyway that was my problem...
hugs, Bernice
Thank you, Bern! Shame on me for not mentioning that possibility - I has just gone on and on about it on another post from someone who is having very dry mouth and pain! I won’t go I to the whole story again, but my brother had a much more serious problem with his salivary glands than stones, same symptoms as you and Crystal (& very similar to bad TMJ and Trigeminal Neuralgia 2) and his was misdiagnosed by the doctors as everything under the sun but what it really was. Like I said, anything that hurts that bad in that part of the body needs to be figured out & treated ASAP, and it’s not uncommon for it to take more than 1 or 2 visits & 1 or 2 doctors to get to what’s really going on.
Thank you everyone for your feedback I really appreciate it! I will definitely keep everyone posted when I figure this out!
-Crystal xoxo