I Need Help: Fibromyalgia-TMJ

closed TMJ

It’s a pain like no other, hard to describe, impossible to treat, at least for me. Falling under the Fibromyalgia umbrella, TMJ is like lightning striking your ear and jaw straight through your brain and head. It kept me up all night; no pain-killer helped it, no heating pad, ice, soft foods.

The pain shoots, there is no warming and no treatment that helps; I didn’t eat any hard foods yesterday. My jaw usually pops and goes back into its socket; I live with that. I was a bit worried about the Presidential election but not enough to be awakened all through the night in utter agony as if I had been shocked by electrical wires, moaning and groaning all night long. I was restless, weary and I hurt so badly; I toss and turn to see if lying a different way will help. Nothing works.

Even though I have had Fibromyalgia for years, the varied symptoms (maybe because of the cold weather?) are worse now. I wish I could scream out loud and get it all out of my system but I can barely open my mouth. I try not to speak, to hold my lips a certain way; I pretend I am a model who is posing for a sculptor who is doing an impression of me in burnt-red clay. I can’t move my lips or my mouth for him to get the correct shape so I try to relax my mouth, my muscles until I find a single spot that doesn’t make me cry out loud. I try desperately to hold that same place so I don’t scream; I am just asking for tolerable not even for feeling good.

I have dealt with many of the other symptoms of Fibromyalglia in an accepting way as possible but nothing has been as urgently painful as this. I’ve been to ENT’s (Ear, Nose and Throat Specialists) convinced I have had flaming ear infections until the diagnosis was always the same. TMJ.  Now, I no longer go to the doctor, I know what it is and I huddle under blankets, drink liquids through a pink striped straw and pray for the pain to subside.

Those of us with this chronic pain disease have so many different symptoms, yet there is usually one or two that affect us the most. This is one of them for me. Pain, out of nowhere, unexpected, usually starting in the middle of the night and continuing as long it takes. I’ve tried the mouth guards (sort of), I’ve tried heating pads, I’ve tried deep breathing and meditating. TMJ lurks in the quiet of my brain and body and jumps out of the darkness to scare me with its razor-sharp accuracy. It attacks with no warning, no signals. Unlike migraines, there are no warning signs. This, I find hard to deal with, hard to surrender to so much pain for however long it decides to stay. For once, i am helpless in this situation, I feel disempowered and small, the pain has caught up to me and it is winning.

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10 thoughts on “I Need Help: Fibromyalgia-TMJ

  1. I feel your pain. Literally. I had no idea tmd was causing my headaches. I thought they were caused by my over compensating from my sciatic issue. Anyway, after seeing a fantastic chirporactor who noticed misalignment while doing myofascial therapy who then referred me to a great dentist, Gary B Olson DDS from Wisconsin Rapids, WI. He’s really an innovator for tmjd treatments – well known – published. He is a healer and not a drug pusher. You won’t find too much info about him online but consider calling and talking to Sue, she’s his right hand, and can probably help you find a provider near you. Especially if you want to go as natural as possible.
    I was diagnosed as having no disc left in either side- severe arthritis. Dislocated at birth and no one noticed!! 37 years of all over pain, finally a diagnosis (at least a partial one – there may be more but one thing at a time). I have 24hr splints and am seeing releif. I refuse to consider surgery. Ibuprofen and the rare muscle relaxer or cocktail. Narcotics don’t really help.
    Treatment is a process, for sure. I drink a lot of smoothies and shakes, use ice paks – no heat at all, try not to stress and clench (yeah right LOL), and I have two massages that I do. First one sounds funny but I use a tennis ball and roll it up and down my sternum. Your facial muscles connect to the C spine which connect to the upper ribs (remember Dem Dry Bones?). The second is i take my thumbs and place them at the bottom center of my chin (mouth closed) and the rub towards my ear as i’m opening my mouth – close and repeat a few times. (I have also massaged the tmj from the inside but that’s personal preference! It’s werid but helpful).
    Best of luck to you ~ Sending healing vibes your way!
    ~C

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  2. Oh my gosh – talk about adding insult to injury. TMJ is horrrrrrrific. When pain is literally “in your face” it’s impossible to put it in the background. I so hope it begins to subside.
    sending love,
    j

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  3. I had unsuccessful neck and elbow surgery for pain before I finally found a dentist that gave me a TMJ splint. It covered my top teeth and kept my jaw from sliding to the side when it opened. I wore it 24/7 for about a year and then the TMJ just completely went away – it no longer slips out or pops anymore – and it took a lot of my head, neck and arm pain with it. I still have pain elsewhere, but my head, neck and arm are much better. Don’t give up, its not hopeless – find a dentist that can make a splint that doesn’t allow your jaw slip out of place. I have talked to other dentists that have never heard of doing that, so keep searching till you find one that has.

    pain, like an bad friend,
    back to beat me up again ~
    please… don’t let him in

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  4. Two of the least understood and most painful ailments of our time, I believe – both fibromyalgia and TMJ – I’m so sorry to hear of your trials and also that I have no advice to offer. You would think with all the advancements in other areas, that there would be more that could be done for these … I am glad that you can write about it. think people suffering from these types of conditions need to keep them front and centre – partly because I think it helps you to do the writing and partly because I think those who do allot research money etc. need to be constantly reminded that these are real problems with real people behind them and they’re not going anywhere. Thank you for sharing your experience so candidly and continuing your battle so courageously. I wish you every success in finding a way to control your pain.

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  5. I’m so sorry, sweetie. I had problems with that years ago, and an amazing physical therapist helped me. She taught me how to keep the tension out of my jaws, or at least be aware when I was starting to tighten up, and how to massage t myself so the trigger point there would release. This will sound weird, but one of the techniques she taught me was to put my thumb inside my open, relaxed, mouth, find the joint, and to massage it and the muscles using my thumb on the inside of my mouth and my fingers on my face, so I could massage the same spot from two directions at the same time.

    Sometimes, I would find massaging the muscles & tendons helped the most, or would find a trigger point and gently massage it (myo-fascial release).
    It is worth giving a shot – and it might hurt worse while you are doing it if there’s a trigger point involved, but feel better when you are done. I hope it helps.
    *gentlest hugs*
    Ash

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    • thank you sweet Ash, I didn’t know of either of these. I will check them both out. although a shot in my mouth sounds horrifying. but a massage that i could do myself (after being taught) from the right person, sounds great. thanks, it does help. now to sip some pea soup.(yes, I made it from scratch) xoxo

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      • Laurie, were I you, I wouldn’t wait to be taught by someone – you can work on massaging the joint & the muscles that way yourself. You’ll figure out what helps quick enough. Feel for knots that shouldn’t be there, and gently rub them out. It hurts but it’s a good kind of hurt, kinda like scratching an itch feels.

        If you haven’t tried massage therapy for fibro pain, then definitely give it a shot! Many massage therapists are trained in myofascial release techniques, and they can bring incredible relief for pain. Rhiannon & I both have myofascial pain syndrome as part of our ME/CFS/FMS complexes, which is where you get inflammed knots in the fascia (the covering over the muscles). You can get a doctor’s order for physical therapy specifying massage with myofascial release, and get it covered under insurance. The myofascial knots are similiar or the same thing as the trigger points you might be more familiar with, but you can get them in many more locations. You can also feel the bumps of them, which can be quite firm and painful, if you do self-massage, and work on them yourself. I get a lot in my shoulders & neck, which refer pain into migraines, and work on the ones I can reach.

        There’s hope out there, Laurie – you just have to find a doctor familiar with myofascial pain syndrome, and many are, especially fibro doctors. The massage can work wonders ~ hoping you find some relief!
        Much Love!
        Ash

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