Does anyone have any jaw problems from RSD? Do you have problems with muscle spasming/ locked jaw??? Any pain when chewing?

Thanks.

I went thru 2 1/2 years of dental work and surgury for TMJ. I have what is called Total Mouth Reconstruction. I catch myself clenching my jaw alot more in the last couple of years. Getting pain in both jaws that I haven't experienced before. Muscle spasms that really hurt. My whole upper body feels like it is just hammered. Between TOS, RSD, and TMJ, it is hard to get any pain relief. I wish you the best and hope you have pain free days.
Stephen

Thank you for the reply Stephen. The muscle spasms in my neck/ jaw are really bad, and...

Yesterday I woke up with a locked jaw. I was sure it couldn't be the RSD... I guess I was just trying not to get paranoid here... and I could not get my mouth open. This had been happening very slightly here and there this past week, but I didn't think much of it because my brother has some jaw problems (popping/ clicking/ locking for a minute), and I figured it was nothing.

I called my Dentist, and the receptionist told me it was probably just an infection, and that I could come in.

When I went to the dentist, the hygenist looked at my jaw first, and she was sure that I had TMJ, and she said "You have TMJ, don't you?". I told her that I have never had any jaw problems before this, and then she started messing with my jaw, trying to get me to open my mouth more. The more she messed with my jaw the worse it felt, and she soon gave up.

I could open it about 1 inch, and then the muscle spasms got so bad that I could only open it 1/2 inch. The hygenist got my dentist in the room, and the dentist (actually!!) knew what RSD was, so she looked at my mouth and she told me it was the muscle spasms from RSD, and that the muscle spasms caused my jaw to lock up. Her words were "I think your condition has just spread up into your face". Exactly the words I didn't want to hear! But I know that it is true- with spasms, slight swelling, and allodynia.

My dentist told me to take Flexeril to calm the spasms down so that I can open my mouth soon! I have taken 3 doses of it so far, and I can still only open it 1/2 inch, but hopefully soon the muscle relaxers will work. My dentist also told me to try heat on it, and that if I had more problems she'll refer me to an ortho surgeon. But... it's just the RSD. No infection, and I should be able to open my mouth soon (though not without RSD pain all in my jaw/ face now).

My dentist told me to eat foods I can "drink"- yogurt, applesauce, soup, shakes, etc. that I don't have to chew.

Allodynia is setting in in my face, and my Dr told me to "touch it, move it, use it"- chew gum (once I can open my jaw better)/ suck on something, so that the allodynia doesn't get really out of hand fast.

Do you think you could have some TOS type issues too?
Hand, arm, neck, shoulder and upper back pain {trps and /or spasms}
It just made me think of that - as quite a few with TOS will have some TMJ sx also.

I'd have to look into that... I never thought about that. All the pain seems to be RSD, but then again, maybe I have a different problem as well? I will be keeping that in mind.

Could you please direct me to a page with TOS symptoms/ basic overview of what it is exactly?

Thanks.

In our useful links are the best sites we have found-

TOS info:
http://www.medifocushealth.com/RT017/index.php
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.cwce.com/feinbergarticles/tos.htm
http://www.doctorellis.com
http://www.vascularinstitute.com/Resource_TOS.htm
http://drbrantigan.com/about/index.htm
http://www.ecentral.com/members/rsanders/
http://www.tellmeabouttos.com
http://www.causeof.org/posture_tos.htm
http://intraspec.ca/tos.php

more info - TOS sticky link-
http://neurotalk.psychcentral.com/showthread.php?t=84

I have had issues similar, although I have kept mine from locking up so far.

I've had mine checked by my dentist, my neuro, my ortho, rheumy, and most recently an Ear Nose and Throat.

I must say that my RSD is currently active in my left shoulder, left arm, and both shoulder blades as the worst areas, with my original area of my right foot following close behind. Then, it spread up my neck, and does include my left jawline, goes across my upper back and now includes my right shoulder and right arm, but it not as bad as the left side. About 3/4 of my back is involved. Also my left big toe has had it for about 6 months. Recently, my right finger tip has been pretty bad... as well as my right knee. Only my right foot (the original site) and my left upper quadrant are really really bad.

I don't take narcotics except the occasional vicoden when the barometric pressure plumets... maybe 2 or 3 a month... but I do take topamax, calcitonin nasal spray (wonderful for the deep down pain of RSD), topical ketamine/lodocain cream, lidoderm patches, two kinds of blood pressure meds, baclofen, and sometimes ultram. Plus a handful of vitamens and herbs. Even taking all of this, I am left in quite a bit of pain... I clench my teeth a lot. I have broken corners off many of my teeth... I think 6 or7 in the last year and a half. I now do some excercises for loosening up my face to help. I try really hard not to tighten my face up during the day, but found that when I wake up at night, my jaws were clenched and very painful.

I've been tested for TMJ, and everyone thinks this is not TMJ.... but complications from constantly being in pain. The solution for me has been taking more baclofen at night.... now I take 30mg .... (better sleep now too!!) and having my massage therapist treat my mouth and jaws. She has made a world of difference.

If you have never had a massage therapist treat you for jaw pain... it's a bit odd. She puts on gloves and puts her fingers in your mouth.... and starts working the knots out of the muscles. It can be pretty painful as she presses on the spasms, but as they relax it feels so good. It only takes a few minutes and it does me so much good. It is so strange till you get used to it.

I tell you -- without my massage therapist I do not think I would be walking like I do, or still be working or even getting better. She is just amazing. Of all the things I have done or tried for RSD, she is the ONE thing that has really worked.

The doctor I saw at the Cleveland clinic said that their research has shown that massage therapy started early on with RSD can prevent the sensitivity. She encourages people to go to massage, but since so few insurance companies cover massage, few people will go. I did not have sensitivity the first time I had RSD, or this time... and I started going to massage for the injury that caused the RSD almost immediately.... so I am a firm believer that it has made a huge difference for me. It may be that I just have an outstanding massage therapist though.. I don't know.

So, if you have not given this a try.... I do think it may be worth it. It certainly makes my jaws feel better. Mine get so bad, I can't eat solid food - and I could never chew gum. My teeth hurt so BAD when it is in a flare!! YIKES!!!! But, with the extra muscle relaxer at night, and the regular massage now, it is starting to go away. My teeth hardly bother me now, and my jaws are really getting better. Whew! I was starting to really worry about needing dentures soon, as many teeth as I was breaking.

good luck!

Yes

its why I have syringe feeds.

don't know anything that helps really.

I have alot of gravy, mousses and things I can suck. Apple sauce is good. thin custard etc.

Mine goes through stages where I can't eat at all because can't open it at all.

Check with dr which meds you can dilute.

it sucks but KEEP GOING with it, and mum believes in wooden spoon therapy.... in bad jaw times she forces a wooden spoon between my teeth and leaves it for a couple of hours.. admittedly I have eaten the end off alot of them but hey, we feel it helps. You just feel even more of an idiot than normal.

love ya

froggsy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I haven't had it lock yet, but I'm afraid that is coming.

I have had tmj problems in the past but this is far worse. All I have to do to set it off is eat a french roll or chewy meat. It has definitely affected my diet. I don't eat those, or crunchy carrots, or bite into a whole apple any more.

I go to soft foods when it flares, and use warm, moist heat on my jaw joints and take valium (as a muscle relaxer) until it settles down. It really is a drag, even makes kissing Hubby no fun.

I hope that you are able to nip it in the bud. I've heard it can worsen if you don't make the changes necessary to avoid triggering it.

Good luck!
Cala

yes i have the same symptoms. mouth pain, teeth nerves, jaw locking, intense aching the list goes on. it seems to centre around the left half of mandibular joint but affects more or less the whole face when the attacks kick in.

strong pain killers ease some of the symptoms but the pain but never really goes.

Surely theres hope out there somewhere. doctors seem oblivious!