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.

[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

[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

[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.

[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 ?  

[tmjpain25]

No, I am not trying to see another PCP in my current PCP's clinic. I must have posted the wrong abbreviation for one of them. Sorry! I am just waiting for my primary care doc to do the ref. to the pain mgt. doc. I then called the primary care to check on the ref. and ask her to do an additional ref. to another pain mgt. doc to see who could get me in the fastest. I have also heard great things about the doc I requested her to ref. me to. I have heard pretty bad things about the pain mgt. doc they were originally ref. me to! Now I will have the option to choose who I get in to see. And the nurse at my primary care docs office said I am still a patient of that practice and not dismissed, I will just not be allowed any more meds. I guess the doc can't write pain meds for very long in his practice. She said on the phone " no more meds at all" so I am pretty sure they won't care if I call in pain and ask for something to help me. I really like the doc that I see and have been there awhile. My whole family goes there. They just said he can't treat this pain condition because I need to seek pain mgt. I wish it would have turned out better, because I don't want to go thru the hassles of finding a new doc, but I think I have to. My husband wants me to give them a call mid-week to see what they say about caring for me until my next appt with a specialist. He said even if they won't help me, they will at least know I am still in pain and am trying to get relief. He said if I just never called to let them know, then they might think I am just fine and dandy. That is a good point. It won't hurt to let them know so it is documented that I am still in pain (obviously). I do know that the nurse that was so rude to me and talked to me last time is no longer working there. They said that is why it took so long to get back to me because she was "let go" and a new nurse took over. Maybe she will be nicer. Maybe there was a miscommunication. I don't know. I will let you all know when I speak with someone Monday or Tuesday. I hope they will get me in fast. I need to get relief. It is very stressful to be in so much pain and worry about someone helping you. I find I am clenching and stressing so much more not knowing what is going to happen and who is going to see me. I am being told to "relax and take it easy" because if I stress out it will be worse, and it's like how in the heck can I relax when I don't know how much longer I will be in this mess. I just want my surgery to come. That is what I think about all the time. If I could just get my surgery I can go back to being normal. I am praying that this will resolve itself very soon. I have waited very patiently for a very long time, and now I am over it. I am trying to be more demanding and stern with this office now. I have my husband to go with me so he can help me express my feelings and pain to the new docs. He is really good about being to the point and stern. I get nervous and cry and forget to ask the questions I intended to ask. I am so glad he is supportive and is going to make sure something is done for me. He is great. Sorry for the long post again. I always do that!! Thank you tuck for your message. I will be researching new primary care docs. Take care.

[Tuckamore]

Hello TMJ,

Your story continues to be heartbreaking. I am so sorry all this is happening to you. I am wondering why you are trying to see another PCP at the same clinic that you x-PCP is practicing?  I would think that even if you had to drive to another town you would be better off leaving the clinic of your x-PCP.

Physicians at the same clinic tend to "stick" together and listen to one another. At another clinic you may find fresher ideas and untainted opinions. If my PCP refused to treat me I would not stay within the clinic practice. There are numerous clinic within 30 miles and I would move my care to one of them.

Hang in there. I will look forward to your next post. And as always, Take Care, Tuck

In my state you cannot receive Unemployment Compensation unless you are physically able to work 40 hours a week. Your state may be different. You may want to apply for SSD if your pain issue will last one year and you are unable to be gainfully employed.