Pain management for chronic and severe TMJ disorder.

[tmjpain25]

I am awaiting surgery on both sides of my TMJ. I have been on bedrest for 4 months. My surgery is scheduled for December. I have been taking hydrocdone 10mg 3-4 times per day as well as 800mg advil. I have recently been prescribed percocet 5mg every 6 hours. This is the only medicine that actually dulls my pain. My condition is chronic and can only be helped with extensive surgery. I have seen numerous specialists in town and out of town. I have tried non surgical treatments for over a year with no results. I have had a bite gaurd (made my the facial pain specialist) for over 8 years. My MRI in June showed that I only had a small sliver of tissue left in my joint space and the doctors said that once I wore through that, it would become much more painful. I now feel like a hammer is driving a nail into my jaw over and over around the clock. I want to have another MRI done asap. I think I have a hairline fracture or something. It feels like bone grinding on bone. I have dealt with this pain for a very long time, but it is so much more intense now and different. It is much sharper and severe. Anyone else had this happen? I have been to the ER several times in the past 6 months and they say that my pain levels "should be thru the roof" and so on. I have been told that my case is so severe that it could fracture at any time. I think it is finally fractured. I am dying here. The percocet dulls it slightly, but the pain gets worse each day. I am also on alprazolam to sleep at night. I can't even sleep with the meds. I am going to call my doctor first thing in the morning to get in right away and get another MRI and another prescription. I know he will not want me to take the strong pain meds for a long period of time, but they are the only thing that works for this level of pain. I do not abuse them and I take them only as instructed. The prescription should have lasted me 11 days, but I actually made it stretch out longer. I am worried that he will think badly of me if I call on Monday to request another rx. I have to have my husband get them for me because I don't drive. Any help or advise would be greatly appreciated. I cannot take the pain any longer. I just don't want my doctor to think I am a bad person for needing additional meds. I am hurting so bad and want to talk to others who are in the same boat.

[andrea16]

Hi, I have not been diagnosed with TMJ but tht speaking to a sufferer may actually be better than going back to the doctors.  Firstly I am sorry to hear u r in so much pain and hope it will get sorted for you soon.  I started having unexplained ear pain oover a year and a half ago.  No doctor can find any cause for it,  I have ringing in the ears (not very loud) and do get migraines.  I sometimes get tingling in my arm and hands and suffer from pain in my arm sometimes and bad posture problems as I am a programmer and have very slight curved spine.  Recently I am getting pain in both eyes, heaviness kind of pain in the head and relaly wierd pain through the jaw which makes my teeth sensitive. I do have a habit of clenching my teeth sometimes.   I have had MRI's previously when I have had bad pains and I am just told all the time its migraines but now my teeth are really sensitive and the symptoms I have seem very towards TMJ ? what does anyone think ?  

[ashkaylene]

I've suffered with severe TMJ for years. I've seen the specialists and taken the advice to help prevent it from coming so frequently and it has helped. But, I still have my bad days.

My pain is completely in my ear. For years I thought that it was some kind of ear ache.. Until I saw a specialist and they explained TMJ to me. It gets so bad that I can't move my head or go from laying to sitting to standing or back. Those are the moments that hurt the most, changing elevation. To explain it to anyone that doesn't go through it - imagine someone taking a knife, shoving it in your ear and then turning continuously. It's terrible.

I've tried strong pain meds and they don't help at all.

BUT.. the only thing that I've found that has helped, and it has REALLY helped - is heating up a wet rag in the microwave and holding it to my ear. I guess that it helps to relax the joint. Yesterday I had a bad flare up and moved the microwave into the living room by a mattress and just repeatedly kept putting a hot compress onto my jaw as I laid on my side. After about five hours I felt well enough to make it in to work.

You can buy aromatherapy heat packs that have the same effect.

Anyways, I've tried everything and this is my life saver. So, maybe it'll help someone else.

Don't chew gum, stay away from hard foods (like tortilla chips and hard candy), and wear the tanner appliance or nightguard.

[brianayala201]

i feel for tmjpain25 i am 20 and have been dealing with this since i was 17. i went from muscle relaxers (flexril) at night to sleep and i have to take 4 of them to ease the pain. and that barely works. during the day i went from 800mg advil to percocet to hydrocodone to oxycoton and vicodin. i took up to 8 vicodin at a time and was still in tears from pain. it didnt start out like that my doc said to "up the dosege by a pill till it eases up". ya not the best advice i can say. i was up to 6 pills of oxycoton at a time and i was seriously sick of it and knew i was killing my body with all the drugs and non of it worked pain still there to this day infact worse my jaw swells up and i look like an angry pitbull. but lately the pain is so bad i wanna get back on meds. i cant barely eat normal food with the pain. people have been saying marijuana might be my best bet since it takes so much meds to do absolutly nothing. so whats your guys opinion should i go back to meds or marijuana(i might be crazy being 20 and in college and actually not wanting this to be my medication but my doctors really are doing nothing and want a better choice then this) or surgery. i need some advice.
thanks  brian

[Quantum_Mech]

This is to everyone that is suffering from TMJ.  I was in a car accident 12 years ago and TMJ started soon after my accident.  I suffered from terrible pain in my jaw and teeth.  I have cracked a few teeth from grinding and have had a couple root canals because of it.  I have been through the ringer for therapies.  I have been to them all it seems.  I have denied ALL surgery suggested from doctors.  I knew there had to be another way.  There is..everyone suffering from TMJ, look up NUCCA.  Go to youtube and type in NUCCA.  Do whatever you can to learn about this type of chiropractic care - it saved my life.  I am not being dramatic, I wasnt living prior to this - i was existing and every minute of it sucked.  Then through hours and hours and hours of researching and researching and researching all that i could i found NUCCA.  I am a patient of Dr. Brooks in Tulsa OK and he is a wonderful man.  After the first visit I felt a difference and relief.  A year later I cant tell you how grateful I am to have found this therapy.  Give the body the opportunity and it WILL HEAL.  It just needs the opportunity.  He is giving my body the opportunity and it is healing - and it is the most wonderful feeling.  All that are suffering - Look NUCCA up and see if it right for you.  I swear to you, you will not regret it.  

Happy Healing to All

[MellieS]

I am reading these posts and am so sorry for all of you in such pain. I had brain surgery at Duke last year for trigeminal neuralgia but they did not find what they expected, and now it seems that TMJ is actually the root of my problem or at least a big part of it. My condition involves extreme head, neck and facial pain, plus electrical shock sensations in my head, face, neck and ear. I take percocet 4 x a day plus sleep med, still I am non-functional and spend as much time as possible in recliner with ice pack. Cannot lay down in bed as that causes extreme pain with shocks. Went back to Duke to see nurse practitioner recently and they have scheduled a neck MRI for Oct 27, then appts with 2 neurosurgeons the next day. But they currently have no TMJ surgeon or specialist on staff and could not refer me to anyone. The oral surgeon who did my bite splint ended up not being knowledgeable enough to help me. I am in southern VA and am hoping that someone can refer me to someone in VA or NC. Traveling causes me extreme pain but I am willing to go to whomever can help me. I have been working with a doctor who does nerve block injections and that provides some temporary relief. The pain is so extreme that I would have committed suicide except for my Christian beliefs. I survive through many nights by having CDs on constantly to help keep my mind from "going there" re suicide. I am allergic to many meds, can no longer take Advil (which did help a good bit) or muscle relaxants. Anyway, would love to have referral to someone very knowledgeable about TMJ.

[Tuckamore]

Hi Mellie,

This thread is three years old. Please begin a new one and don't attach your question one that was originated by some one else.

You'll obtain better information and responses... and that's what I hope for you.

Best Wishes,
~Tuck