Hi
Yes exactly the face and throat is just like severe tmj. And throat clicking.
But that exactly same all over body. Spasms tightness and sensory stuff
So I use to go to doc t first and say my jaw hurts
My throat hurts my teeth hurt (no cavaties)
My back hurts and on and on. Until the doc and I realize this is same thing happening all over.
He called it fibromayalgia but the neurologist disagrees
Especially when I woke up a day after flu shot and it fired up my nerves like never before! Went to er three nights in the row and they send me back home.

I wonder how structural this can be. I do have
Mild to moderate disc bulging in neck but doc said no nerve trapped.
Reason I say structural is because my whole body is severe stiff like a stick.
Then any turn of neck just induces or worsens all involve symptoms . Even goes in legs.
Massage therapist said " well ofcourse all is connected"
and I am so stiff and site my whole back that even bending my neck ripples all
I bend my neck and like guitar strings pull in different spot on back inducing Twitcing and all way down my legs
So that's what's strange. Have had lumbar and thoracic MRI done years ago any it was normal.

At he same time million tiny spots will spasms on their own and twitch. This is where neuro says it's a nerve issue with signals going haywire for some reason

Simple things like washing a plate is a task as the action of arm Mobic that way my back stiffens an worsens the already tight. Like all
Muscles are on lockdown.

I took a rubberband last time to the neuro to explain how I feel. I stretched t out to the max and said this is how I feel and now try to move the band how hard it is. Don't know if that's good enough way but that's how I feel

Just took 30mg baclofen so hoping it kicks in.

Thanks to all that listen.
Tulips

Mrs D
 

What do you think about trigger point injections.
I was offered botox by one neuro and told by another to avoid it like a plague!

Thankyou

I dont really know enough botox but " neural therapy " in the tmj might be something worth looking into.

When your talking pain over the whole body , your really talking about something that sound more myofascial related to me , esp if its causing pulling on muscles etc.

Its hard to say whats causing what , as rule ( ive had range of things since 16 and im now 36 ) nerve pain ,as far as i know , doesnt usually cause tightness to happen in the muscles ( at least not the neuralgia sort ) so thats why im wondering if its more secondary .

Im not an expert though ( Mrs D would know a lot better than I ) but if I were you id try and rule out the possibility of things such as tmj by seeing if neural or even prolotherapist if the tmj joint is weak .

It might be you grind your teeth in your sleep or have strained the ligament there for all I know , but if you werent aware of it then you wouldnt know , as these things ( Proprioception ) is not something the average person can detect until it usually becomes a big problem and then triggers others .

Im not trying to scare you, just suggesting that things like tmj might have more brearing than you think given the skull / neck / spine are all connected.

Trigger point like neural is more of short term fix but at least it might give you an idea of whether a certain area like the jaw is being a catalyst in the sensations your experincing elsewhere.

m

Tulips, I am thinking of you tonight. Praying for you to have some relief. The rubberband analogy is so good and can totally picture how you feel.

Drwk,
Thankyou so much for all your kind words. Means a lot.
I will pray for you too.

Melon,
I will look into the neural treatment.
I am lookin into myofascial. Seems so fitting.
And I always wonder the severe tightness puts pressure compressing nerves.

Tomorrow I am going to acupuncture and will ask er too.

I went to pulmonilogist in 2007 and chest and back spasms so bad and tight and even now. But it causes hard to breathe. As it's like Chostochondritis.
So I had high resolution ct scan an that was normal.

Well I can't even cry too much as that over exaggerated movements mess me up even worse.

I remember one day riding back in the train from newyork to Connecticut. I put my head in my husbands shoulder. (1998)
I fell asleep. My neck was over stretched. Well when te train stopped and I woke up, my neck was a big mess. Pretty much I think that was something that triggered an event. I don't know.

I always clench my teeth and woke up many times with tight lock jaw.

Then as young days and even now just laughing too much I use tonhave to rub the area behind ears as they would hurt so bad from over laughing. So always had tense muscles.
Even a sneeze is enough once to throw my neck out.
Changing diapers and giving baths invade thrown my back out.

But let's see.
We are almost same age. Do you have any kids?
Hope you are having a good night.
Thanks for listening and helping
Tulips

I have not heard positive things about botox and would never do it myself for pain relief. There are too many posibilities of a reaction or getting worse.
For myself I am very sensitive so even like a massage would make me worse and stir up the nerves rather then settle them down. Everyone is different but I think in general one has to be very careful of what types of treatment they do. I think working with a pain management doctor who deals a lot with this type of condition is key.
My NC test I can't recall how long it was. I also had an SSEP with the NC/EMG. It was stated that when the NC/EMG does not show etc that SSEP is done. I had both legs done though I do know that even though at that time it was only in 1 leg but then it spread to the other leg as well which my neuro said is common. Like I said though I have RSD as well.

I don't know anything about trigger point injections. I think Botox is a last resort. There can be serious reactions to Botox.

I think you should try the magnesium lotion some of us are using...it is very very relaxing... At CVS.. My local CVS carries it in the store.

http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true

Do not apply near the eyes. You can do your chest, arms and back of the neck. I think it is very nice, and I apply it before bed to relax me and it helps me sleep without waking up. If you apply over large areas, you can drop the magnesium oral version.

@ Tulip,
Could be a start. There are options for treatment, but its big bucks. Insurance issues are the dictators of our treatment it seems. I have more bloodwork ordered, some I think I've had already. Now I am getting all those rare antibody studies for Paraneoplastic Cerebellar Degeneration (which I know I don't have cause they said cancer and myeloma was ruled out) and are being tested because they are on the blood work list of things to do. If I had no insurance, they would not even be considered. It not that they want to make money, it just that it's a big teaching hospital and tests are a teaching tool.

I have a similar problem with cramping. It is much better than a year ago when I couldn't do much of anything without cramping up, no burning though. Now when I lift my right leg, I get the charley horse in my abdomen. My pain is intermitant electrical shocks down my right hip and leg, shocks and pain down the back of my legs. I have herniations in the neck and thorasic spine (waiting on the reports to be sent to me) which the neuro thinks has some mild pressure on my cord causing mild brisk reflexes. The twitching is all over from the shoulders down which my doc says is from spinal irritation of any kind, be testing, mechanical, whatever.

I too have a dreadful fear of having anything start up in my face and throat. I can understand how distressing this must be. I thought I saw something about a Bruxism neuropathy on the the list of what else can go wrong with PN, but I do not have the link saved. Really scarry. My prayers for you.