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Fibromyalgia and TMJ

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Posted 7/27/2010 2:01 PM (GMT 0)

Hi, everyone:

First post here. I have been diagnosed with fibromyalgia in 1999. about at the same time, I started having severe pain in my jaws and cheeks, and my dentist recommended a mouth guard for sleeping. It worked fine for a long time, but early this year, the pain came back with a vengeance. I went back to the dentist, to have a new mouth guard made. He examined me briefly and said that I needed orthodontics, not a new mouth guard. Two days later, the orthodontist recommended braces and surgery to bring forward my lower jaw. I am in shock. I never saw that coming. All the health professionals know that I have fibro -- I mentioned it on the medical questionnaire--, but they never said anything about it. Is there a link? Has anyone been in my situation?

confused  

Posted 7/27/2010 2:29 PM (GMT 0)
Hi!  Many fibromites have TMJ...me being one of them.  I have had it for years.  There was a point when my jaw was so locked up I couldn't even get my mouth open far enough to have dental work done.  Now the joint has disinigrated and my jaw pretty much hangs freely...if that makes any sense.  I have had an expensive mouth guard made and couldn't wear it...caused canker sores on my gums.  It was recommended that I have that surgery where they wire your mouth shut for about six months...the hubby would have LOVED that, but NO.

Maybe someone else has a solution for you...I have just let it be.  The alternatives are too extreme for me.  I do understand how painful it can be, however...the trigeminal nerve goes right through your jaw.

Yes...fibromites are prone to TMJ.  And no...many doctors don't see the connection.

Donna

Posted 7/27/2010 5:13 PM (GMT 0)
Hi and welcome. I had TMJ many years ago. My dentist wanted me to go to a physical therapist but insurance would not pay for it. I actually went to a chiropractor in the group I was already using for some other pain I had. She specialized in neck/jaw issues. I don't remember everything she did but it wasn't the rough jerking stuff. More like deep tissue massage I guess. Acupuncture too. It did help me. I think I would get a second opinion.
Posted 7/27/2010 7:18 PM (GMT 0)
First, Welcome to the group. Lineni :D This is a great place. I hope you'll stay and enjoy the friendships you can make here.

I'm really sorry about your dental experience. I too have TMJ. I suspected it for years, but my dentist said it out loud to me 2 yrs ago which clinched it of course. I broke two upper molars - same one on each side - withing 1 week of eachother because I probably grind, or clench while sleeping. I can't afford the $500-$600 mouth guard, but have been wanting to buy a certain over the counter guard at some point.

I would be pretty darned shocked too to get an out of the blue suggestion of big surgery. First thing I would do is research on the net. Plug in your exact diagnosis and see if some of the bigger dental web sites explain various treatment options for it. There can't be just ONE solution to the problem. Next, after you're armed with a little more knowledge, get a second, and perhaps a third opinion. This is your body - and that sounds like serious surgery - you have every right to understand fully what will be involved, what options are available, what sort of success rate the surgery has, and any possible side effects or down time that can come from doing it. This is your body.

I really hope your dentist was wrong in his suggestion. Keep digging for more info. You may find answers that will reassure you, one way or the other.

*hugs*

Please keep us in the loop about this. We're a supportive group - and we're happy to stick with you.
Posted 7/27/2010 7:44 PM (GMT 0)
Hi Lin, and welcome to our fibro family, Im another fibromite with jaw problems. I have also been told that I should have surgery to bring my lower jaw forward, by some miracle mine has never caused enough pain for me to feel that the surgery is necessary.(keeping fingers crossed and praying) I do have the crunching sound that you get when you open your jaw but as far as pain not that bad. I am sorry that you are having this problem and I will pray that you get relief soon.
Gentle Hugs
Shirley
PS: just wanted you to know that you have come to the right place and there are so many caring people here. Alot of them will be along to greet you soon. :-)
Posted 7/27/2010 9:11 PM (GMT 0)
Hi Lin

Welcome to the forum.  I too have fibro and also TMJ.  about 25 yrs ago I was having severe migraines and through alot of research contacted my dentist to be checked for TMJ (I had the clicking sound, which is what lead me in this direction).  Long story short, I had a mouthpiece made by my dentist ( I had insurance at the time)  and wah-laa--No more migraines! 

 I continue to wear my mouthpiece nightly and maybe once a year get a beginning of a migraine which goes away with asprin and coffee.  My dentist checks my mouthpiece regularly and almost invariably states--You really clench at night, not grind, just clench, which he can tell by the wear on the mouthpiece.  So my experience has been very positive with the use of a mouthpiece. 

Yo-yo 

Posted 7/27/2010 10:02 PM (GMT 0)
It's so nice to be in contact with people who understand me. To make my first post short, I didn't mention that I went for a second opinion. So, I went to dentist B, who is a friend of the family. He examined me briefly and had some xrays and imprints taken. He told me that he had never seen two jaws so mismatched. There is hardly any contact between, which creates instability and, most probably the pain. He sent me to another orthodontist (orthodontist B), who was very non-committal. I may not have to have braces, but maybe some day I will need braces. He would recommend braces with the extraction of one premolar on my "good" jaw. He is against jaw surgery, has refused it for himself (yes, he is wearing braces), but I may end up needing it too. But, if I get the premolar extracted, then no surgery. Are you still following? wink

All these consults are costing me money, stressing me out and taking a toll on my energy level.

I really don't know what to do.

 

Posted 7/29/2010 3:09 PM (GMT 0)
I guess that, what I am trying to understand is: There is no cure for fibro, and TMJ is said to be a symptom (or one of the many manifestations) of fibro. Therefore, would any treatment for TMJ work? If I decide to go for the big treatment (braces and orthognatic surgery), do I have a chance to see a good improvement?
Posted 7/29/2010 3:30 PM (GMT 0)
Im not really sure what to tell you Lin. I know that TMJ can come along with our diagnosis of fibro but like with other things it can be treated. I also have arthritis which generally follows along with fibro too. But they gave me cortisone shots for the arthritis in my knees and I havent had any problems with them in over 5 years. I have had the menstrual problems that alot of us seem to get and had a hysterectomy 6 years ago. No more problems with that. I guess what Im trying to say is that the surgery might help your jaw pain so that would be one relief from all of our various symptoms and pain. It will not heal your fibro but it might give you relief in one area of your pain. Ok Im rambling now. Just want you to know that you are still in my prayers.
Gentle Hugs
Shirley
Posted 7/29/2010 3:35 PM (GMT 0)
Thanks, Shirley. I understand what you mean. So, TMJ can be treated apart form fibro. That is helping me a lot.
Posted 7/29/2010 6:58 PM (GMT 0)
Lin,

That was what I was trying to get across with my story about the migraine headaches and the TMJ.  Basically, I have no jaw pain and very rarely do I get a migraine so the mouthpiece worked for me in stopping those particular pains.  The relief there helps me deal with the Quote "normal fibro pain" Unquote.  I don't know what I'd do in your case.  I doubt a mouthpiece would do the trick considering your jaw alignment is so bad.  Surgery, boy, I don't know.  I guess I'd give the extraction and braces a shot--especially since the orthodontist stated he himself passed on the jaw surgery.

Yo-yo

Posted 7/30/2010 3:08 AM (GMT 0)
Lineni-
I was diagnosed with TMJ issues long before I was Dx'd with fibro. Yes, in some cases people have found relief of this symptom, with various methods. IMHO surgery would be a very last option. I don't think I would do it in any case.
My jaw pain is with me every day and does not vary as other fibro pains tend to vary. I clench during the day, not at night. Have been taking Soma for years. It helps sometimes. Another thing to try, if clenching is an issue, is progressive relaxation but only focus on the head, neck and shoulders. Including the jaw of course. I have been using this focused relaxation when my jaw is really hurting. I have given up on any other methods after all of this time.
It does help to relieve any symptom you can as long as you are not causing another issue. I learned that with the shoulder surgery I had last April. It was supposed to help, but I still have more pain after than before, and did not even have a rotator cuff tear. I will not have any other surgery unless it is really going to help. How do we ever really know? The doc even admitted he was not sure how long it would take for the surgery to make a difference in my pain level, however I was so frustrated prior to surgery I was willing to take the risk. Won't do that again.
Good luck, and research. Don't let it stress you because that will tighten that massiter muscle and cause more pain!
Rose
Posted 8/2/2010 5:21 AM (GMT 0)
Lineni, my worst bout with TMJ was back in 1989, long before I was ever diagnosed with fibro.  I woke up one morning in severe pain, and could not open my mouth.  My dentist referred me to a specialist in our town, an older dentist near retirement age who "dabbeled" in TMJ treatment.  After a series of Xrays, he started treatments using a TENS unit, which seemed strange at first, but helped a great deal.  The treatments "loosened" the spasams in my jaws, and soon, I was able to open my mouth wide enough for him to take measurements for a dental splint.  This device was also helpful. Somewhere in the process he fitted me for a mouth guard.  This helped when I would wear it, but I would usually removed it in my sleep because it bothered me. The dentist soon began using a computerized device with a sensor that  supposedly measured my bite.  He would have me bite down on this plastic piece, and he could supposedly tell were my teeth did not meet evenly.  Then, he proceeded to grind down the enamel on my teeth to make them meet more evenly!  This was very painful, and it made me uneasy.  However, I was young and niave, and little was known about TMJ at that time.  The treatments did seem to help, so I went along with it. 

The series of treatments with this dentist lasted for eight months, during which I would have several appointments a week.  I don't know how many thousands of dollars my insurance company was billed for, but I know that it was a lot of money.  Thank goodness, I had good insurance at that time, as I ended up paying very little.  I think I pretty much financed his retirement (or at least contributed heavily toward it) because he retired within a few weeks after my treatments ended.  I had a bad flare-up a few months later, and there was no longer a "specialist" in our town.  I had heard that the university hospital just about 90 minutes a way had a good TMJ department.   I was able to get in right away.  I met with a young dentist there who just shook his head when he heard my story.  The first dentist's methods were apparently very outdated, and the honing of the enamel was known to lead to cavities later on.  He prescribed flexaril and feldene, and this helped a great deal. No offbeat treatments were given.  Although I have had a few flare-ups since then, the medications have always helped.

Please be very careful with your selection of specialists, and with the treatments that they prescribe.  There are many "quacks" in this field.  Fortunately, I have not had any ill effects from the grinding on my enamel so far.  I just always put off going to the dentist much longer than I should because I can't stand to hear the drill. 

I wish you luck with your TMJ, and hope that it doesn't require surgery.  Please keep us posted.

 

Post Edited (steppingstone) : 8/1/2010 11:34:42 PM (GMT-6)

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