Fibromyalgia in ear neck jaw? - My Fibro Community

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Fibromyalgia in ear neck jaw?

erasurefan profile image
5 Replies

Hi i have just been diagnosed with fibromyalgia.

I had the worst pain i have ever experienced for nearly 3 weeks. Taking pain killers every few hours, trying antibiotics prescribed by emergency dentist. Thought it was a dental issue as teeth were throbbing continually. Referred to a doctor. He believes it is this. The pain is only in my ear, neck, glands, throat, teeth, it is continual. It dies down slightly then intensely throbs for a good 10-15 mins sometimes less. The pain is so intense. Does anyone alse have this just in that area? I would appreciate any comments, thoughts. Thanks :)

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erasurefan
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Mellamp profile image
Mellamp

I’m dealing with the same issue right now. Mine starts in my neck and goes up throughout my head. I had an agonizing migraine for the past two days. If I find the trigger point that it started from and massage it or press down it eases the pain for a few seconds. I believe it triggers the occipital nerve at base of skull that cause the pain. This is what my doctor has told me. I take Lyrica, Cymbalta and ibuprofen and nothing eases it. Sometimes when this happens I can ice the area and it takes it away. You could also ask doctor for a Toradol shot. They had helped me in the past. I’ve been working 16 hour shifts and have no time to see my doctor, so sweating this one out. I hope you get relief soon. It’s horrible dealing with.

erasurefan profile image
erasurefan in reply to Mellamp

Hi thanks so much for your reply :) I just feel very unsure that is fibromyalgia. Mine seems to be just incredible sensitivity in my teeth and ear, feels like a really bad ear infection. Doctor adamant it is not. He has prescribed tegretol which is a epilipsey drug which has some horrible side affects and do not want to take. Hot and cold are unbearable and the pain is incredible. Thanks so much for your advice of things to try at least. We are not alone by the sounds of it x

Bmw640 profile image
Bmw640

Hi earsurefan

Sorry for the late reply, I pick up via email which is usually 1-2 days after a post. Your symptoms sound like trigeminal neuralgia. Do you have pain around your outer cheekbone area next to your ear and also across your lower jaw? Swelling also happens in this particular area with some people. I have temporomandibular joint disorder as a knock on effect from ‘stiff man syndrome’ type muscle rigidity and TMJD has a classic symptom of this pain pathway plus the swelling I just mentioned. I also get the pain through my throat. and deep inside my ears which is an excruciating pain as if someone is drilling into my skull. Your trigeminal nerve is one of your major skull nerves that runs along your teeth & is easily triggered by jaw movement in someone with either temporomandibular joint disorder (joint between upper & lower jaw) or very tight sternocleido and scalene & other neck muscles or both of these. These are all common features in fibro.

I find heated wheat packs help. When it kicks off none of my pain meds touch the pain & I have to lie down in a quiet room with my head & neck well (softly) supported until it calms.

Anyway hope this info is of use to you & hope you get good relief from your pain very very soon.

Take care

Bm

erasurefan profile image
erasurefan in reply to Bmw640

Hi thanks for your reply. I think you have hit the nail on the head. I can barely eat or drink beacuse moving my jaw at all is so painful. Major pain along my lower jaw and cheekbone and area next to ear, had some swelling, but currently gone back down as symptons have eased from what they were. The pain was unbelievable for a good 2 weeks there, someone drilling into my skull would be how i would have described it, with pain relief meds galore being taken every hour or so and not even touching it. Thanks for all the information, will def try the wheat pack. Expoloring all options at present. Looking at herbal remedies etc. Thankyou again appreciate any help i can get.

All the best with your condition too, im certainly discovering this is pretty unbearable to live with x

Bmw640 profile image
Bmw640 in reply to erasurefan

Hello again

Really glad I’ve passed on some useful knowledge to you. My neurologist tried me on tegretol for my ms symptoms & it just sent me to sleep, 12 hrs in every 24 just weren’t enough! I understand from both neuro & GPS that tegretol/carbamazepine is generally well tolerated with little side effects evident for most people. Don’t know if this will ease your worries about the side effects listed? I know I probably shouldn’t say this but short release (fast acting) oxycodone used to help my pain though it’s not easily given by doctors these days. Wheatybags.co.uk do some good wheat packs, thought I’d mention this in case you want to take a look. I find the bright bubblegum pink cotton covers cheer me up!

Let me know if you find any good solutions, I’ll be very interested to hear them.

More good luck & a gentle hug!

Bm

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