I have Fibro, RSD and now severe TMJ pain with headaches and neck pain. Have had chronic pain since 1984. Just recently developed TMJ from a facial injection procedure for another problem (burning lips, tongue, gums). I have multiple conditions which cause chronic pain almost everywhere in my body and am disabled. Can only walk a very short distance. However, this TMJ is worse than anything as I can hardly talk, eat, swallow. No meds have ever helped any conditions - tried over 40.
Anyone here have any ideas about this TMJ?
May you all have pain free moments. This is a life of constant torture.
Sydney

My mother had sever TMJ for many years. The orthodontist gave her two choices , break her jaw and reconstruct, or wear braces for several years. She chose the later. All is better now. not perfect, but much, much better. Good Luck

I liked the TMJ health series from this company,very different from what exercises they usually give. More oriented into training your senory motor complex.

http://www.feldenkraisresources.com/

You might also look into this, esp if the TMJ include migraines

http://www.nti-tss.com/migraineprevention.html#Design

Sydney, sorry to hear you are going through all of this... I know your pain. I have the mouth problems, RSD, headaches, and neck aches. It's so rough! Sending you ((((((HUGE HUGS))))))

I heard that mouth massages were good... Lyrica has helped with mouth allodynia for me, and menthol cough drops in the mouth. I like to put cool pain gel on my face for the pain.

Here's a thread I had started on the jaw troubles: http://neurotalk.psychcentral.com/sh...ad.php?t=17313 (daylilyfan talked about the massages)

and one I started on migraines: http://neurotalk.psychcentral.com/sh...ad.php?t=19689

one on MIGRAINES/ RSD: http://neurotalk.psychcentral.com/sh...ad.php?t=17664

Hope these help, though very late!

Huge pain free hugs:

One of my sisters has TMJ from being hit by a door in HS. She wore braces for several years (in her 30's) and is doing better. Still pain, but bearable, most of the time. Hope you find relief.

My TOS surgeons recommended Feldenkreis as part of the rehab.
I always felt better when I was doing it .
You really have to stick with it as it is not a big bang treatment though you do feel better after some treatments - it is slow methodical body alignment work that works best over a period of time.
We in pain are completely out of whack - we walk incorrectly or move incorrectly to protect whatever hurts which in turn causes all sorts of things to go wrong in and with our body - we are one big chain reaction domino theory The practitioner works on putting us back together again. Humpty Dumpty if you will.

I too have TMJ and have found that even with RSD I get the most relief with intense cranial sacral massages that incorporate that mouth work w/gloves.
Those trigger points in the mouth are so tight but when they get in there and relax them it hurts so good ( that and a mouth guard !!!)
I haven't chewed in so long that the muscles next to my eyes that are the major chew muscles - press on yours - you can feel or not feel them when you open and close your mouth - are completely atrophied and my face is slightly indented inward right next to the eyes at the temples.
Thankfully no one can notice.
I did get lots of migraines - much more before I started taking topomax- I still get them though - whether it is TOS - a vert tight neck and back from an old fracture - shoulder impingement - TMJ - I have no clue which one is the major culprit

Good Luck to you Sydney .
I hope some of this helped a little or you find some help somehow
i think you might really benefit from long term commitment to Feldenkreis .
It might put some things back where they once belonged?

Much peace

GnP

Hi Sydney...

I'm so sorry to read that you have all this pain.

You haven't mentioned if you take B12 injections or sublingual Methylcobalamin... I've found it helps me dramatically with pain.

But it's not a cure all.

I have some severe pain in my jaw sometimes... (in fact that's how come I didn't realize I had tetanus when I had it... )

I was taking masses of Ibuprofen when I had tetanus and to handle the jaw pain that wasn't associated with the tetanus, but then the periodontist I saw, who's about the best here in Santa Fe, said that Ibuprofen was bad for jaw bones and weakened them or deteriorated them... I forget exactly.

So I stopped using Ibuprofen and started using serrapeptase which reduces swelling.

The serrapeptase helped the pain in my back.. and I also started having amino acid powder in my coffee, and I was able to walk a little bit before the pain was overpowering.

But now I can move more freely, it's as if some of my bones that felt fused are freeing up. And I have a lot lot LOT less pain. I went to the periodontist last September... so you can see it didn't work over night.

I've had Feldenkraiz work done, and it helped a lot. The interesting thing for me is that the Feldenkraiz guy said that I was too tight... and now (this is maybe 15 years later) when I'm less frozen feeling I have less pain.

As an aside, I just recently found a thing where my doctor wrote that I had fibro (on my medical certificate filed with PNM to keep my lights on... years ago) ... but I don't think I have fibro because I once asked on a different forum what the symptoms were, and mine didn't match them.

For me, I think that low vitamin B12 has been at the bottom of a lot of my health problems and challenges.

((((((((Sydney)))))))))

Oops, I forgot to say that the serrapeptase helps with my jaw problems a lot... as does vitamin C, which is because I have an infection around my old dental implants... (never a dull moment)

.

One morning I woke up with muscular TMJ. My joint was not an issue but my muscle was hurting so badly. I thought it was a tooth and went to dentists. They said "yep, tmj, see a specialist." So I did and it was going to cost 3-4 grand to fix my mouth. I ended up going to a chiropractor who specialized with TMJ and he was able to work with and through the muscle problem. As well as handle the neck pain along with it, and the headache also caused by it.

Hugs. I find that because of my RSD, it is acting up because I clench my jaw more from the pain. So I use what the chiro gave me and I put a finger on my cheek, find the spot where the top and bottom meet, and rub small circles in that area. AND you need to push, almost like deep tissue in the joint area.

Let me know if you have any questions.

Well my PM doc just pulled this treatment for TMJ out of his bag of tricks
I thought I would share it with all in case someone else wanted to give it a go.
He wants to give me botox injections deep into the TMjoint .I have to go straight from the botox injections to physio in the same morning so they can start working on relaxing the muscles right away.
As I have RSD and I am a wimp I will probably( absolutely) have to do this under general.It is a short process but the last thing I need is increased stress or a new trauma site for spread.
I am leaning towards this procedure.
My food options have become limited to those of an 80 year old ,and needless to say, besides the increased pain related to the syndrome, my TMJ is affecting my intimate relations in a negative way. My boyfriend ain't pleased
kissing everyone kissing- wild make out sessions - minds above the belt pardon the pun) ya ...OK

So I will give an update after I let myself be used and abused in this way.It seems to be a quicker solution to this long term problem that I have been working on for a while.The muscles just seem to want o go back to clenching.
It is their way of telling me "yikes - life is a little tough. I am worried" while I present a calm cool collected exterior :
Yes and I have swamp land in Florida for sale too

Much peace
GnP

I had FMS, MCS, RLS,TMJ, IC, IBS and "a progressive multi-system neurological disease triggered by post lyme syndrome". Lyme disease...

My TMJ turned out to be BABESIOSIS, a tick borne disease. I have no pain today and no symptoms, am 100% symptom free.

I haven't had any acronyms for 7 years now- it is nice*)!!!

Babesiosis can cause fibro too so i would make sure you get tested for Babesiosis- there are different strains depending on where you live- West Coast is WA1, East Coast is Microti & MO1 & midwest is MO1 & Microti...

Anyway, you can do a challenge with Dr Zhang Artemisia for Babesiosis- if you have a reaction within 5 days you haev it, if you don't you don't- the herxheimer reastion is when it seems like you are allergic to all abx and means you have a bacterial infection- not to be confused with an ellergic reaction but often people think that is what is happening- your symptoms get worse on abx-

BABESIOSIS is not treated with antibiotics but with anti-malarials-

Anyway, that's my experience, my TMJ was Babs, my fibro was Lyme and I am all better- hope you find a path to wellness, too-
Best wishes,
Sarah