Lupus, You’re Such A Pain In The Jaw

It’s been a while since I vomited here. I’ve been extraordinarily busy. This is not the result of too much work, though some may argue that it is. It is the result of a series of “little” lupus hiccoughs that have been causing “little” setbacks in work. These “little” setbacks start to pile up. Then, once these “little” series of lupus hiccoughs are over and I have a moment to breathe without the jostling effect of lupus, there is this enormous mountain for me to work through, only for the next series of hiccoughs to begin.

The latest thing to flare, the oh-so-lovely temporomandibular joint disorder or TMJ syndrome; one of many secondary disorders that some lupus patients have.

Normally, the effects of this I do not notice. They are constantly there, but after living with such a condition for so long, you learn how to ignore it, which isn’t always a good thing. But you drown out the constant ear pain. You learn to ignore the dull, aching pain that is always in your face. If you didn’t ignore these things, then nothing would get done.

But then, KABLOOEY! IT FUCKING EXPLODES INSIDE OF YOUR HEAD LIKE A BAGILLION MEGA-TONNE ATOMIC BOMB! POW! KABLAM! ZONK! Because you were a fucking dumb-dumb head who became so use to ignoring the constant minor annoyances, you neglected to notice when the inflammation was approaching critical mass until it is too late.

Or at least, that is what I do.

I’m the fucking dumb-dumb head who has been ignoring the migraines that happen immediately following eating for well over a month. Well, maybe the migraine thing wasn’t so much ignoring as it was making the assumption that it was the result of my lupus CNS issues, and forgetting that it could also be my TMJ stuff. So instead of increasing my muscle relaxants and anti-inflammatories, I was monitoring myself for the signs of another stroke. Oh the fucking joys of lupus where one little symptom could be the result of a thousand different things. Seriously, lupus. You fucking suck!

I’m the fucking dumb-dumb who has been ignoring the little popping and locking every time I talk, eat or drink, and the increasing pain and discomfort while doing those things, for well over two months.

I’m the fucking dumb-dumb who’s been ignoring the increased dizziness, or rather thinking it was my CNS shit instead and, as a result, monitoring my cognitive functions while ignoring the increased throbbing pain in my face.

I’m the fucking dumb-dumb who’s been ignoring the increased pain in my neck and shoulders.

I’m the fucking dumb-dumb who’s been ignoring the well over a month of waking up multiple times throughout the night because I’m in so much god damn pain.

Don’t get on me for calling myself a fucking dumb-dumb. It helps me keep myself in check. And maybe next time I won’t ignore it until that one morning when — that one morning when happens to be this morning –…

I opened my bloody mouth to yawn and LOCK! POP! OMFG THE PAIN IS UNBEARABLE! SOMEONE PLEASE KILL ME! Immediate tears start to swell in my pathetic eyes and now Jules is grumpygus for the rest of the day…

And now I can’t chew at all… well not exactly at all but it took me close to 20 minutes to chew on green pea pod thing and another 20 minutes to chew 5 grains of rice and another 20 minutes to chew a well-cooked carrot sliver and another 20 minutes… well you get the idea.

And now I can barely drink. You have no idea how much your jaw goes in a backwards/forwards motion when you are swollowing until you’ve fucked up your jaw so badly that you cannot do it without a lot of careful thought and consideration because one wrong move and it is LOCK! POP! OMFG THE PAIN IS UNBEARABLE! SOMEONE PLEASE KILL ME! MY JAW IS BEING RIPPED OUT OF MY FACE! MAKE IT STOP!

And now I can barely talk because I think I’m Superman and can ignore things because I’m tough and strong and nothing can touch my special ass… except for maybe lupus because it is the bloody kryptonite someone planted in the medal I received for surviving hundreds of lupus flares and a stroke. What kind of jerk would do that!

So, yeah… that is how I’m doing today. Taken out of the game due to a “little” series of hiccoughs that decides to suddenly go all thermal-nuclear war on my ass. IT’S LIKE ARMAGEDDON INSIDE OF MY FACE! LUPUS IS FUCKING MY FACE! I can think of much better things I’d like to have fuck me in the face.

So now I sit and wait. Try not to talk too much over the next 12 hours. Fill myself full of extra muscle relaxers and NSAIDS. Starve. Become dehydrated. Hope that is passes quickly so that I don’t have to start another series of painful corticosteroid injections. And maliciously hope that one day I’ll be able to return the favour and fuck lupus in the face.

27 Responses to Lupus, You’re Such A Pain In The Jaw

  1. Hi I have Lupus too – for over 20 years now and i have jaw pain that just started a few days ago. I wonder if it has something to do with me CONSTANTLY clenching my teeth from never ending gd chronic pain. Broke my jaw as a kid on the same side but that was like many many moons ago so that connection is a stretch. Did you have yours checked? i dig your your site – gotta love anyone who can still laugh it up while having this shitty disease!

    • Yes, I did get mine checked. TMJ, plus arthritis in my jaw (as well as pretty much everywhere), is one of my secondary to lupus things.

      Happy to hear you like the site. Regarding laughing: Yes. It’s either that or get really depressed. I choose to laugh 🙂

      • THANK YOU! I have TMJ plus arthritis in my jaw, am currently flaring, plus just had emergency surgery for my appendix and found an ovarian cyst that had burst and has been bleeding in my abdomen for over a month. FINALLY got that under wraps annd now my god damn fucking jaw is acting up. and i really feel like a dumb dumb because i ignored my body for 6 months and then everything blew up at once. Guess i’m not super woman! But i always choose to laugh too and be positive. and knowing im not alone makes me feel just a little bit better. even with the mini (massive) explosions/migraines going in in my jaw today. So thank you for adding some humor and realism to your post. 🙂 Hope you’re feeling better. FUCK LUPUS.

  2. Thank you for this post! I am seeing a dentist who is fitting me for a guard. Over a year of jaw pain that has gotten so bad I can’t think without pain. I am also switching my rheumatologist since she poo pooed this issue a year ago.

  3. Wow! I also was monitoring myself, but for a heart attack lol, never did I think it could be something else (more lol), so it’s the first time I officially heard of TMJ and yes I’m experiencing it right now too, I did wonder what flare up I would have as a result of my flu this week, now I know, Thanks for the article, hope you’re well.

  4. I’m sitting here reading this as I have a ice pack on my face. I went to the hospital a few nights ago with the worst unbearable jaw/head pain. Nobody mentioned the possibility of TMJ. My jaw feels dislocated and I can’t chew anything. My jaw clicks, my ear hurts, I’m dumbfounded that they sent me on my way with a headache pamphlet! I do have lupus and am always in pain. I hate even trying to explain my ailments to doctors anymore! I’m so sick of this diesease! I’ve had so many surgies in the last 2 years. Back, neck, ovaries and gall bladder. Nothing ever heals right so I’m in tremendous pain always. Now this!

  5. You are amazing! I can’t believe I found this site! All what you stated in your tmj rant and lupus is everything I wanted to say but haven’t about this fucked up, tiring, life sucking desease! FUCK I hate it! I hate feeling more tired when I get up then when by some miracle I fell asleep! Thank God! Someone who gets it! Thank God for you and the others who replied. I just got diagnosed but have probably had it awhile. I too, monitor for the dreaded strokes that come with unmerciful vomiting, retching and inability to to function for a bit. So I am always monitoring for them from the fear of the consequences.. Thanks to you….

  6. My doctor suspects I have Lupus. I think he knows but just says he suspects to spare my feelings. I have all the classic symptoms with high Sed rate, CPK and positive ANA. Tomorrow is the MRI. The past few days my jaw is now popping and cracking like crazy. As I Googled TMJ with Lupus I came across your blog. I’m glad I did as I took myself off of the NSAIDs due to bleeding out and extreme stomach pain, but the bleeding stopped and lately the shoulder, leg, back and jaw pain are increasing so after reading this I will take my NSAID tonight as I do not want the pain to intensify. So much for me to learn about this. I’ve had pain for 2 years and lately my hair started falling out which finally led to Lupus and blood work. Depression is pretty bad, especially when I was never a depressed person, more like the life of the party. I I miss the old me so much.i feel like I’m slowly disappearing.

    • I have been suffering with undiagnosed RA and Lupus with a dash of Fibromyalgia. Now diagnosed and on meds. Feeling a little better and now feel like I am exploding. The back pain feels like I am having my spine ripped out and my jaw feels, um, IDK how to explain it. I can barely swallow. I am soo busy with my son being the bus to school, folklorico, hip hop and soccer plus all the performances. I dont got time for the chronic pain and all the fatigue.

  7. Ha, decided to research lupus and jaw pain and bingo! This was the first link I clicked on—perfect! Your description of what we go through leaves me nothing to add. I’ve been ignoring the increasing clicking, shifting, popping and pain and then tonight with my first bite of dinner—BAM!!! The pain almost put me on the ceiling!!! Have never had TMJ like this….but yes, it started with headaches, neck and shoulder pain and even my right arm is affected now. At least I know I’m not alone…

  8. Omg. Your blog brought a tear of laughter to my not so fun filled day. As I write, I’m sitting in the tub relaxing my sore joints and icing my swollen jaw. I just recently got diagnosed with lupus. The past two years I ignored the “little” tinge of pain in my joints. I disregarded those “minor” rashes I got on my chest and back. I wrote off those days I couldn’t get out of bed to over doing it the day (or 5) before at work or the gym. I ignored those days my legs looked more like logs and toes looked like sausages from the swelling. Until BLAM! MIGRAINES, EXTREME PAIN, RASHES EVERYWHERE, SWOLLEN EVERYTHING! And now here I sit wondering if the new found pain in my jaw is related to this oh so wonderful disease, and I found your blog. Exactly how I feel. I’m glad I’m not the only dumb dumb.

  9. Thank God Your Site Came Up As I’m Looking For Information On What’s Happening To Me.The Overwhelming Feeling Of Being Alone With My Pain/Lupus, Is So Heavy 🙁 Family,Friends, Even Doctors Just Don’t Understand.. I’m Always Feeling The Need To Defend and Explain Myself, As Well As Show My Lab Results/Diagnoses To All. In Hopes That Anyone Would Just Try To Understand. Here, On Your Site 🙂 I’m Not Alone. All I Say, Feel And Experience Are Written Right Here. Thank You All For Sharing And Helping Me Feel Less Alone 🙂
    Im A Dumb Dumb Also.. Mostly Because It Feels Hopeless..Haven’t The Resources To Get Help And Just Feel Like I’m Bothering People With My Problems Anyway 🙁
    Thanks Again For Being Here As I Look For More Insight To My Symptoms.. God Bless Us All

  10. The sound of my jaw whilst I was chewing or talking, the pain in my jaw that is moving closer and closer towards my ear & today unable to ignore the increasing neck pain! I soak very regularly in Epsom salt and alcohol with not much relief if any!! As I was starting to search jaw pain & medication side effects, somehow I ended up searching lupus & jaw pain, so I’d hopefully have the “right” questions to ask my Dr. at my next appt. and found A LOT of me through your words! I became scared, sad & glad etc that I was not alone thanks for sharing!!

  11. Omg, I love this! You just said everything I’ve wanted to say for the last two years. FUCK Lupus!!! I started having jaw pain and tightness. I thought I would check to see if it’s a new symptom and BAM! I found your blog. I hope you are having a good day, at least as good as we can have.

  12. Thank you! You have verified I’m not alone! Lupus fucking sucks! 3 years diagnosed and 2 years of tmj along with 7 different specialist for my other hiccups!

  13. Just another miserable day in the life of a Lupus sufferer,who now has severe jaw pain and ear pain that is making me feel like crap! I once read that “more people commit suicide from TMJ pain than any other disease in the world”. I can truly believe it because this pain is relentless! You’re right Lupus fucking sucks!!!!! Big time!!!!

  14. Wow! This post made my day. I don’t have lupus, I had a dislocated jaw. Then I started fretting over whether maybe I had lupus. I did a word search for “quinine lupus” and your site popped up. It really is so comforting not to suffer alone, thank you. I know you’re a web designer, but did you ever consider submitting some of your written work to magazines? Seems like you’re a natural.

  15. I typed in lupus jaw pain and found you! What do you all do for the pain? I think I may die I have TMJ and have for yrs then about 3 months ago horrible jaw pain,headache,neck and shoulder pain. I’m in misery and I don’t know what to do. I’ve never had pain like this with TMJ. Now it’s more frequent and at first I thought it was a tooth but I’m pretty sure it’s not cause I can eat on it, press on it and no pain but my jaw hurts my tongue even hurts. Do I go to a de tish or to my regular dr?

  16. I wish it hadn’t taken me so many years to stumble on this kind of page. You ladies have made a miserable freakin day more bearable. You sound like me! The fatigue has me almost ready to quit my job and live in a box under the bridge. It’s all I can do to stay upright to teach class. And by Saturday I crash and can barely move. The adjoining Srojens has my eyes on fire and swollen, cant swallow, jaw is almost unable to open to drink so I can’t get rid of the thirst. I feel like crying but cannot produce enough moisture for tears. And my kids think Im lazy because I stay in my room on the bed. All my medical bills are in collections so I cant be seen by a Dr to try treatment again. Life is a fucking pain the everywhere.

  17. Thanks to all I recently diagnosed and just feels like one thing after another…went for a root canal today and low n behold the dentist was wrong about my tooth the specialist took X-rays n it’s my jaw. My job is Customer service at a driver center extremely busy all the time talking and typing all day and stressful….. worrying that I may have to look for different type of work??? Painful to type and now to talk … any thoughts to help me I am still in denial going for a second opinion.., anyone have advice ?? Newbie

  18. Wow, good to know I’m not alone out there. I Googled tmj and lupus and found this. The past 3 months the jaw pain has been relentless but I’ve had lupus symptoms for 10 years. I’ve had pain in my knees and hips, and fatigue. The pain radiates to my temple, cheek, eye too. I’m beginning to think its an autoimmune flare up and need stronger meds. Hugs to all.

  19. So “happy” to find this blog…like Allison, I Googled TMJ & Lupus to get here. Out of the blue about a month ago, my jaw started to pop and click whenever I open/close my mouth, or yawn, or chew…like having the routine joint pains and ridiculous fatigue isn’t enough!

    Love the humour Jules. Cheers to all of you…together we can kick lupus to the curb…someday.

  20. OMG YES! I had this never ending pain for 3 years and I saw 3 different specialist (ENT, Oral surgeon, neurologist), a physical therapist, and even my rheumatologist at the time and not a one of them could tell me definitely that it was TMJ, but the rheumatologist and physical therapist helped manage the pain. They all just kept passing the ball to get the next specialist to decide a definitive diagnosis. I eventually had to diagnose myself and change doctors.

    I too have a tendency to ignore symptoms or overlook symptoms because that’s just what living with lupus is. You cope with pain at varying degrees every second of everyday.

    I am so glad I came across your blog when I typed in lupus and jaw pain. Your humorous approach to living with lupus is refreshing.

    I was also diagnosed with CNS lupus in March. I stopped taking my psychiatric medications for Depression and Hypomania for 9 months because it was hard differentiating if my psychological symptoms were co-mormbid conditions or symptoms of CNS. I focused on my recovering from my flare, and just recently got back on medication for my depression.

  21. This looks like an older post, but THANK YOU!!!! This has happened 3 time (one of them last night) I know what it is now. Explosives used very accurately describe the pain, My jaw doesn’t want to line up. That is my lower jaw and upper jaw! That’s on top of the excruciating pain. I’m also the lucky winner of chronic shingles. I have SLE, MCTD, and Antiphospholid Syndrome among other things. When I stop the antivirals, I break out in shingles again. Fun, Fun. Fun… you would think they would have better drugs for this by now! Benlysta sucks. Did nothing for me.

Leave a reply