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.

[notfeelinhot]

tmjpain25, I have never heard of tmj ever being that bad for somebody, I had no idea that people had it worse then i do... I am 16 years old and have suffered from daily migraines and headaches for almost ten years. I have honestly forgotten what it feels like to feel good. I've had this migraine for two weeks and no medication has helped at all. I've always gone through this though, but their getting worse. I've been to the neurologist before, and they have prescribed me many different preventatives which only made me high and never helped at all. They also gave me MaxAlt for when I get a migraine, I am only supposed to take it twice a week so i dont get immune to it... but i get a migraine more then twice a week so I take it as needed... I also take excedrine tension almost everyday though too. My mom yells at me for taking to many pills, but all I want is to feel better... I want to feel good. She always says she is sick of me complaining, but she never realizes how sick I must be of getting a throbing migraine everyday.When I went to the neuro doc. they diagnosed me with tmj and then I had to get a mouth guard from the dentist which didnt help at all. They said my tmj was really bad. It gives me a constant headache, constant jaw pain, constant neck pain, and my lymphnodes are insanely swollen all the time, I also have a bump on the back of my head that really hurts too, and my jaw constantly is locked and pops whenever I talk or eat. I wish I knew what could help me because this is no way to live. It's so frustrating to hear people say they have never gotten a headache, because I cant even remember the last time I did'nt have a throbing one. The people who have really bad tmj, I give us all serious props because we deal with it, and we do those daily tasks feeling like crap! When if others woke up one day feeling like we do everyday, they probably would'nt even get out of bed.

[cornishrex13]

THIS IS A VERY COMMON THING  AND BAD FOR US AS PATIENTS. . IT IS WHAT WE CALL IN THE MEDICAL FIELD AMONG NURSES THE PASS THE BUCK SYNDROME. DRS. WANT TO ONLY WORK WITHIN THERE SPECIALTY. BUT FOR MOST OF US THAT SYNDROME OF THEIRS DOESN'T WORK VERY WELL . THE FAMILY DR. DID MAKE A DEAL TO MANAGE YOUR PAIN MEDS. TILL YOU COULD HAVE YOUR SURGERY, THEY JUST WERE NOT EXPECTING FOR THAT SURGERY TO BE MOVED BACK 2-3 MONTHS. BECAUSE YOU SEE NO ONE WILL ASK  WHY DID THE SURGERY TAKE SO LONG,ONLY WHY DID THE PATIENT HAVE THOSE KIND OF PAIN MEDS THAT LONG. AND YOUR FAMILY DR DOES NOT WANT TO BE RESPONSIBLE FOR A POSSIBLE ADDICTION. REMEMBER NOT ALL ADDICTED PEOPLE GET THAT WAY FROM RECREATIONAL ABUSE BUT GET STARTED FROM REAL MEDICAL PROBLEMS LIKE YOURSELF. BUT MOST FAMILY DRS. CAN CALL IN FAVORS WITH A SPECIALIST. THEY CAN MAKE A DR. TO DR. PHONE CALL. I KNOW PEOPLE THINK THIS HAPPENS ALL THE TIME BUT IT DOESN'T IT IS USUALLY A MEDICAL ASSISTANT CALLING FOR THE NEXT AVAILABLE APPT. TELL THE FAMILY DR TO PLEASE MAKE A DR. TO DR. CALL AND EXPLAIN WHY THE APPT AND SURGERY NEED TO BE MOVED UP. THEN SEE THE PAIN CLINIC DR. AND EXPLAIN WHAT HAPPENED AND TAKE A NOTE FROM YOUR FAMILY DR. TO THAT APPT . SHOWING THE ORIGONAL DATE OF SERGURY WHEN THEY STARTED YOUR PAIN MEDS. WITH THE TESTS SHOWING HOW BAD  YOUR PROBLEM   IS AND THE INFOR MATION OF THE NEED TO CHANGE  THE SURGEON AND NEW SURGERY DATE AND THE REQUEST THAT THE PAIN CLINIC FOLLOW THE PAIN MEDS TILL YOUR SURGERY. THAT IS THE LEAST THEY CAN DO. DON'T EXPECT THE PAIN CLINIC DR. TO BELIEVE YOU ABOUT BEING SENT TO ANOTHER DR. AND THE SURGERY BEING PUSHED BACK HE MIGHT THINK-BLA-BLA-BLA. REMEMBER PAIN CLINIC DRS. HAVE HEARD IT ALL. EVEN PEOPLE LOOKING LIKE BANK EXSECUTIVES  CAN BE GREAT LIERS  TO GET MORE PAIN KILLERS,BUT IF YOU HAVE A LETTER TELLING THE FACTS OF THE HEALTH PROBLEM AND ALL OF THE ABOVE AND ASK THAT THEY LEAVE THE ADDICT PART OUT. TELL THEM YOU DON'T WANT THOSE TYPE OF IMPLICATIONS ON YOUR PERMANENT MEDICAL RECORD THAT COULD CAUSE YOU PROBLEMS DOWN THE ROAD ALL BECAUSE A SURGERY HAD TO BE RESCHEDULED  THROUGH NO FAULT OF YOUR OWN. YOU DO HAVE RIGHTS AND I AM  SURE IF YOU WERE USEING YOUR MEDS AS PRESCRIBED  YOU CAN GET THAT PART AMENDED OUT OF YOUR CHART.SINCE THEY DON'T WANT TO TAKE CARE OF YOUR PAIN ANYWAY.  IF THE PAIN CLINIC DR HAS ALL THE INFO. I AM SURE HE WILL BE WILLING TO MAKE YOU COMFORTABLE TILL YOUR SURGERY.SO JUST MAKE SURE THE FAMILY DR GIVES YOU  THAT LETTER  ......GOD BLESS YOU DESERVE BETTER TREATMENT THEN THIS................CORNISHREX

[janrack]

I totally understand your pain, I have the same problem, and I am 27. I've had problems since I was 14 when they told me I was the "worst case they'd seen in someone so young". I've seen chiropractors, neurologists, facial pain specialists, prolotherapist, had trigger point injections (awful reaction, wouldn't do it again), accupuncture, massage, seizure medication, antianxiety pills, muscle relaxors, a splint, and a pain killer called imitrex. NOTHING works. I try to be good about the stretches and massage, but they don't seem to do anything. I feel so alone, so it is interesting to hear your struggle. I also feel like the doctors don't understand or listen. I am at the end of my rope and I don't know what to do next. Hang in there because you are not alone!

[mellie4]

Just want to differentiate between me and MellieS!!!  Sometimes we read something (or I do anyway) and post and then realize how old it is.  I'm always glad when someone points it out to me.  I wish there was a way they could sort of archive the really old posts so people could read them but have them as sort of closed to discussion or something.  On some forums (even on MedHelp sometimes) old information is outdated and there's newer information on things, whether it's surgeries, pain meds, statistics, etc.

[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

[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.