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Pain management for chronic and severe TMJ disorder.
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.
Thanks once again for your great posts. I am happy to have found the support that I have been seeking for months. It's so good to hear from others who are going thru the same thing (or similar) and who are so supportive.
I have to have a ref. to the pain mgt. doc from my primary care doc, due to my health insurance. They did the ref. almost 2 weeks ago and told me they market it "urgent" and that they should get me in around the 11th, and that the new PM office staff would be calling me early in the week. They never called, so I called them to verify that they had recieved the ref. and they said they recieved it a week ago, but needed to talk to my primary doc before scheduling my appointment. They said they are having trouble getting them on the phone and that they had left several messages. I had called them for a week and left messages each day and no one ever called me back either. So now, since the ref. can't be scheduled until they talk to them, I probably won't get in there till December.
I talked to the nurse at my primary care finally (Friday) and she said she would send me to a different PM doc to see if they could get me in sooner. I have heard not so good things about the doc they were sending me to, so I requested that she ref. me to another one. They said they don't have any appts. till late Nov. early Dec. So whoever I get in to see will be awhile.
I do have the surgery consult at the university hospital in late Nov. so at least I have that to look forward to. Maybe they will get me in for the surgery soon, but the holidays are coming up, so it could be forever. I just don't know what to do for pain till then. One time when I went to the ER the doc gave me an rx and injections, Another time I went they said that I should see my reg. doc or surgeon. He also said he does not give prescriptions for anything unless it is a broken bone or something. So I don't want to even sit there for 6 hours to hear that.
I think I will call my primary care docs office once I hear when I can get into see the pain mgt. doc to let them know that it is their fault I had to wait so long and that they need to see me or do something for me till then.
I will be bringing my husband with me to the appt. because they usually are way nicer to me when he comes. He will say what is on his mind and I am usually a mess when I am there, so he can cover topics that I would not be able to express due to my distress. He is down right angry that they are doing this to me and that we are having such hard times financially due to all this. It is stressful on a marriage to have little income and all this stress. I am very fortunate to have my parents helping us out with bill money and such. I owe a ton of money to the hospital and I had to tell them to back off and that I will pay them what I can pay and when I can pay it.
I am trying to get unemployment, so that would certainly help a lot. I really hope it works out. I will know by the end of next week. Stress makes me tense up and I already get migraines from stress, so I have the constant jaw pain and then the headaches caused by the tmj, and then tension headaches and migraines too. I just wish they would help me till the surgery consult or something. I have tried tramadol,ultracet, and ultram before. I had a weird reaction to them all. Like a hot feeling, nausea, tremors, just a weird feeling in general. I tried to see if I could get used to the meds, but they made me so sick I ended up worse than before I took them. I also get sick from Tylenol 3. It makes me feel like I am going to have a heart attack. I get so hot all over a itchy. And I have tried Nuerontin (sp) and threw up for like 24 hours. I would rather take tons of advil.
I have a huge bottle of advil, ice packs, heating pad, icy hot patches, and thermacare heat wraps to use and they do help a little. I am also noticing that the custom splint is causing me more pain when I wake up in the morning. I will need to call that doc on Monday to have him check it out and make adjustments. All of a sudden it just makes the jaw hurt worse. The MRI showed more fluid build up in the right side and I am wondering if that has thrown everything out of wack. It certainly feels much different and I have been wearing it all the time, so my teeth have not shifted at all.
I still have a small amount of meds left over and am trying to make it thru. It is very hard and very painful. I am only taking them when I feel like I am going to die from pain and am throwing up from it. I have felt so bad knowing that I might not get any relief for at least a couple weeks. I just have to make it thru each day and stay positive. Maybe I will get a nice, caring surgeon who will get me in quickly and help me get my life back.
Thank you guys so much for all your great advice and help. I greatly appreciate it. I will post again after I talk to someone Monday or Tuesday. I have all the records from the primary doc, but they are sitting up at my husband's office, because he had them faxed there and he was supposed to make copies of them and bring them home, but he forgot. Once I read all the notes, I will have a better understanding of how they are thinking of me as a patient. I also asked them for all the prescription history, so that will be helpful with the new PM doc. They want me to bring all that info in, and then they can see for themselves that the primary doc wrote me scripts for months and months. They will also be able to see that I never asked for meds early or "lost" them and asked for more or anything like that. I feel that if they thought I should be on the meds 5-6 months ago, and they are the ones who recommended certain meds, then I should not be punished for not being able to have my surgery in a timely manner and needing help with pain control until that time has come.
I will post again next week. Thanks again for all your kind words. Sorry I always ramble on and on with these posts! It is so nice to talk to someone who gets me. Thanks again. I hope you all are doing well and enjoying your weekend. Take care.
I have to have a ref. to the pain mgt. doc from my primary care doc, due to my health insurance. They did the ref. almost 2 weeks ago and told me they market it "urgent" and that they should get me in around the 11th, and that the new PM office staff would be calling me early in the week. They never called, so I called them to verify that they had recieved the ref. and they said they recieved it a week ago, but needed to talk to my primary doc before scheduling my appointment. They said they are having trouble getting them on the phone and that they had left several messages. I had called them for a week and left messages each day and no one ever called me back either. So now, since the ref. can't be scheduled until they talk to them, I probably won't get in there till December.
I talked to the nurse at my primary care finally (Friday) and she said she would send me to a different PM doc to see if they could get me in sooner. I have heard not so good things about the doc they were sending me to, so I requested that she ref. me to another one. They said they don't have any appts. till late Nov. early Dec. So whoever I get in to see will be awhile.
I do have the surgery consult at the university hospital in late Nov. so at least I have that to look forward to. Maybe they will get me in for the surgery soon, but the holidays are coming up, so it could be forever. I just don't know what to do for pain till then. One time when I went to the ER the doc gave me an rx and injections, Another time I went they said that I should see my reg. doc or surgeon. He also said he does not give prescriptions for anything unless it is a broken bone or something. So I don't want to even sit there for 6 hours to hear that.
I think I will call my primary care docs office once I hear when I can get into see the pain mgt. doc to let them know that it is their fault I had to wait so long and that they need to see me or do something for me till then.
I will be bringing my husband with me to the appt. because they usually are way nicer to me when he comes. He will say what is on his mind and I am usually a mess when I am there, so he can cover topics that I would not be able to express due to my distress. He is down right angry that they are doing this to me and that we are having such hard times financially due to all this. It is stressful on a marriage to have little income and all this stress. I am very fortunate to have my parents helping us out with bill money and such. I owe a ton of money to the hospital and I had to tell them to back off and that I will pay them what I can pay and when I can pay it.
I am trying to get unemployment, so that would certainly help a lot. I really hope it works out. I will know by the end of next week. Stress makes me tense up and I already get migraines from stress, so I have the constant jaw pain and then the headaches caused by the tmj, and then tension headaches and migraines too. I just wish they would help me till the surgery consult or something. I have tried tramadol,ultracet, and ultram before. I had a weird reaction to them all. Like a hot feeling, nausea, tremors, just a weird feeling in general. I tried to see if I could get used to the meds, but they made me so sick I ended up worse than before I took them. I also get sick from Tylenol 3. It makes me feel like I am going to have a heart attack. I get so hot all over a itchy. And I have tried Nuerontin (sp) and threw up for like 24 hours. I would rather take tons of advil.
I have a huge bottle of advil, ice packs, heating pad, icy hot patches, and thermacare heat wraps to use and they do help a little. I am also noticing that the custom splint is causing me more pain when I wake up in the morning. I will need to call that doc on Monday to have him check it out and make adjustments. All of a sudden it just makes the jaw hurt worse. The MRI showed more fluid build up in the right side and I am wondering if that has thrown everything out of wack. It certainly feels much different and I have been wearing it all the time, so my teeth have not shifted at all.
I still have a small amount of meds left over and am trying to make it thru. It is very hard and very painful. I am only taking them when I feel like I am going to die from pain and am throwing up from it. I have felt so bad knowing that I might not get any relief for at least a couple weeks. I just have to make it thru each day and stay positive. Maybe I will get a nice, caring surgeon who will get me in quickly and help me get my life back.
Thank you guys so much for all your great advice and help. I greatly appreciate it. I will post again after I talk to someone Monday or Tuesday. I have all the records from the primary doc, but they are sitting up at my husband's office, because he had them faxed there and he was supposed to make copies of them and bring them home, but he forgot. Once I read all the notes, I will have a better understanding of how they are thinking of me as a patient. I also asked them for all the prescription history, so that will be helpful with the new PM doc. They want me to bring all that info in, and then they can see for themselves that the primary doc wrote me scripts for months and months. They will also be able to see that I never asked for meds early or "lost" them and asked for more or anything like that. I feel that if they thought I should be on the meds 5-6 months ago, and they are the ones who recommended certain meds, then I should not be punished for not being able to have my surgery in a timely manner and needing help with pain control until that time has come.
I will post again next week. Thanks again for all your kind words. Sorry I always ramble on and on with these posts! It is so nice to talk to someone who gets me. Thanks again. I hope you all are doing well and enjoying your weekend. Take care.
I decided to chime in with everyone else about how upset I am with how you have been treated. Good news is you got the referrals. Now the next step is getting you pain meds until your PM appointent. You need to get a new PCP anyway and I know with the way you feel that sounds like climbing a mountain, but there are good doctors out there. And when you tell them you have a PM appointment and just need meds until then, they are usually OK with doing that.
That's what happened when we moved. I saw my Internist and he set up a pain management appointment for me and I couldn't get in until 4 months later so he said he would cover me until then. When you are at your new PCP appointmnet make sure you tell them you followed the rules to a T and you do not understand why they did this to you. You have all those recommendations for surgery, so you have valid reasons and a history with them of taking them the way you were supposed to.
I got punched in the jaw by accident while teaching a kick-boxing class and really messed up my jaw. I had internal bleeding in both joints and then ended up with TMJ so I can somewhat relate. I have had 2 BAD flares and it was some of the worst pain and I get chronic kidney stones so I know pain. So I can't even immagine what you are going through.
After you get into pain management and you get settled, I would highly recommend pursueing a case against your previous doctors. They did abandon you and left you without pain meds. I also agree with whomever said to get a patient advocate. If nothing else you may stop them from doing this to someone else. That will be up to you and how you feel about doing that.
But the first thing is getting you meds until your PM appointment. I hope you find a new PCP quickly and that he understands your situation and gets you some meds.
Melissa
That's what happened when we moved. I saw my Internist and he set up a pain management appointment for me and I couldn't get in until 4 months later so he said he would cover me until then. When you are at your new PCP appointmnet make sure you tell them you followed the rules to a T and you do not understand why they did this to you. You have all those recommendations for surgery, so you have valid reasons and a history with them of taking them the way you were supposed to.
I got punched in the jaw by accident while teaching a kick-boxing class and really messed up my jaw. I had internal bleeding in both joints and then ended up with TMJ so I can somewhat relate. I have had 2 BAD flares and it was some of the worst pain and I get chronic kidney stones so I know pain. So I can't even immagine what you are going through.
After you get into pain management and you get settled, I would highly recommend pursueing a case against your previous doctors. They did abandon you and left you without pain meds. I also agree with whomever said to get a patient advocate. If nothing else you may stop them from doing this to someone else. That will be up to you and how you feel about doing that.
But the first thing is getting you meds until your PM appointment. I hope you find a new PCP quickly and that he understands your situation and gets you some meds.
Melissa
I am in school for Medical Office Assistant with billing and coding. You have many rights here that you are being screwed out of. Per the HIPPA laws, you have the right to your medical records. You maynot hve mental health records, but that is not what you need anyway. A couple of things you could do to help your self would be calling the office manager at the dr who no longer wants to treat you and tell him/her that you will be coming in for you medical records. You will not get the real file, but you are entitled to a copy. OK, you can also get a copy of your med records from your pharmacy so you can show it to the PM Dr. Does your insurance make you have a referral? IF not, you open the yellow pages and start at the top and call your way throug until you find a office who will help you. The state where you live maybe watching the amount of pills your old Dr is writing and what kind. You can also go to the ER and get pain help there. You will not get very many pills, but they maybe able to refer you to a specialist who can help you get this done now. You may get a Dr at the ER who thinks you should be admitted now and have this done. I read that you have an appointment with the PM Doc, good when you go in, be honest...unless you are keeping somethings from us here, you have nothing to worry about. Any good PM Doc will know that you are in pain and help you out. Tell the Doc that the other Dr cut you off and will no longer be your Doc. THe PM Doc's job is to help you be out of pain. When all else fails, cry!!! I am very serious, take you husband along with you, Men oftern listen to Men better. Offer to see a clinic social worker. In your case, I would always take someone in the exam room with you until you find someone who is willing to help you. Perhaps you could have a consult instead of a office visit. It may be cheaper. Hope all of this helps.
I can totally relate to the facial pain, I have a condition which I can not spell, sorry, but I willtry. It is called Trigeminal Nurologial or close to that. What happens is a blood vessel swells and pushes agianst the Trigeminal nerve. They say it is the most painful facial pain any one can have. I have driven off of the road during a "spell". I was to atleast 10 dentist before a Nurologist(again sorry about the spelling) told me in about 30 seconds what I had. I can have surgery to fix it, only 10% chance it will take and the have to go through part of the brain to do it. Could lose my hearing, taste, and several other things. Maybe you need to take a family member or your pastor with you to explain to your DR how much the pain is taking the enjoyment from your life.
Reading your story is upsetting..I can't believe the Doc would do this to you. I would contact a Patient Advocate affiliated with your clinic and tell them what is going on. You should also ask the nurse what she would do if she had the TMJ pain and was told to take Advil....I can't stand such self righteous ppl. I would get an appt. with a pain specialist and explain to them what the nurse said..Possible addiction, that's nuts.
Other than that I don't know what to say to you except please take care and good luck in the future.
Mollyrae
Other than that I don't know what to say to you except please take care and good luck in the future.
Mollyrae
I too am very sorry for your pain and the run around you are receiving. Our medical delivery system is in extreme and urgent need "fixing." I can't tell you how angry stories such as your make me. This is unacceptable patient treatment, rather lack of treatment.
I agree with Sandee that you should find another PCP asap. Your current PCP refusal to prescribe you needed pain medications is absurd. Tramadol is a non-narcotic pain reliever that many ppl find effective. There is much controversy that surround this drug regarding it's addictive qualities. However at this point that should not be your major concern. You require pain relif/control. Certainly your PCP should have no justifiable concerns for prescribing it for you until you are able to locate another PCP.
Again best of luck to you. Thank you for keeping us poted. I hope we at least able to provide you with some comfort. I'll look forward to your next update. And as always, Take care, Tuck
I agree with Sandee that you should find another PCP asap. Your current PCP refusal to prescribe you needed pain medications is absurd. Tramadol is a non-narcotic pain reliever that many ppl find effective. There is much controversy that surround this drug regarding it's addictive qualities. However at this point that should not be your major concern. You require pain relif/control. Certainly your PCP should have no justifiable concerns for prescribing it for you until you are able to locate another PCP.
Again best of luck to you. Thank you for keeping us poted. I hope we at least able to provide you with some comfort. I'll look forward to your next update. And as always, Take care, Tuck
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