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.

[Tuckamore]

Hello TMJPain,

Welcome to MedHelp. My heart goes out to you. Your pain must be excruciating. I am so sorry you are in such severe discomfort.

First let me say that you should never feel bad for taking pain medication when you need it. You have a genuine reason for pain and you should not have to apologize for needing to ease it through narcotics. In all actuality you are not taking a "real strong" medication. Yes it is supposedly stronger than Vicodin but there are many stronger opiates. And it is my suspicion that you require something more than the Oxycodone to control your pain. Your physician should understand that and prescribe you either more of the current narcotic or a more effective one. If he is educated in pain management and a compassionate physician he should not "think bad" of you. After all that is why there are opiates. If he will not prescribe you additional medication or a stronger medication than I suggest you search for another physician.

We are here any time you need to chat. We all know what pain is and can relate. Please let us know how it goes tomorrow and how you are doing. And hang in there. Take Care, Tuck

[SHELLBELL79]

Wow I had no idea TMJ can get that bad. I have TMJ bad, I grind my teeth 24/7 and don't have a bite guard yet and was sent to a specialist b/c haven' tdone either b/c of money. I already need almost 20 grand of work done on my teeth from all my medications drying my teeth out. My jaw constantly goes in and out of socket, cracks, severe muscle spasms, etc. I get throbbing pain on the side of my jaw and muscles spasms and knots in my jaw muscles. Sometimes when I eat my jaw will lock and hurt like hell. I know its a pain in the but. I hope everything goes good with you!
My my mother is a Dental Assistant and has worked with Regular Denists, Endodonic Specialists in Surgery, Oral Surgery and, Maxiofacial Prostdodonist for almost 40 years. She told me shes would definatly recommend you to see a Maxiofacial Prostdodonist. We only have one in our state in Louisiana. She also recommends you to definaltly see that kind of Dentist/Doctor but also get other opinions from Dentist who just specialize in TMJ, tooth grinding, pain, etc. Not just from a facial pain specailist! Good luck! I hope everything gets taken care of!!!
Shell

[BusyGrl]

The Anxiety community on medhelp has good advice on calming down the reason you grind and clench your teeth (anxiety). I'm still struggling with it and your posts struck a nerve with me. I used narcotics the same way--very sparingly, always fearful of addiction--and my doctor seems to be very conservative about pain management with the result that I don't feel like I'm getting helped. I have been struggling the last 2 months since stopping oxycodone and clorazepate. Antidepressants, sedatives, muscle relaxers, and prescription non-narcotic pain relievers aren't quite doing it for me. It seems to take a lot of iterations and heaven forbid, going through a lot of doctors to find the sweet spot. My jaw started popping and aching a week ago, and I have trouble opening my mouth wide enough to eat normal-sized bites of food. I figure it's more of the same anxiety-related stuff rather than the deterioration you describe. I wonder if tmjpain25's pain is caused by years of bruxism to start. It sounds like a traumatic experience. I sure hope you get the help you need soon.

[Jaybay]

Wow.  I so feel for you in this situation.  Obviously surgery is the only thing that will help you, so is there any way you can move that date up a bit from December?  

You obviously need the pain medication and are in no way abusing it, so put aside the guilt and worry and just call your doctor!  Enough is enough.  God bless you and hang in there.  :-)

[sandee1818]

I agree, you should not feel guilty for taking the medication you need and your Dr will not think less of you for needing pain control when your obviously in such pain. I believe you need something  stronger that will help with your pain on a better level.
Talk to your Dr and don't be afraid to tell him that you are in a lot of pain and need help with it.
Your Dr knows the amount of pain you must be in and though he does not want you to be on pain relievers long term he does understand the need for relief. If he does not it is definitely time to seek out a Dr who does understand and that is willing to help you.
Good luck and we are all here for you.

[tmjpain25]

Here is an update: had new Mri 2 weeks ago. Just got the results. It shows fluid build up in the right joint and more deterioration and displacement. I have not had my surgeon look at the actual films yet, because she is still out on bedrest for her hip problems. I was told by her nurse that she is not sure she can do my surgery in December because she is not healing as fast as they thought she would. I have now been referred to another university hospital to see the chief of oral surgery there. It's out of town (6 hour drive). I then got a call from my primary care docs office a couple days ago, and they said that they are taking me off all meds. They are afraid I will become addicted and referred me to a pain management specialist. They want me to do more injections, which I refuse to do. I have had so many sets of different injections by many different specialists, and it makes the pain way worse afterwards. I told the nurse that we should worry about any possible addictions after the surgery and after my pain is gone!! I spoke with the nurse at the surgeons office and he agreed that I should stay on the meds and agreed with what meds I was being prescribed. Then the primary care nurse calls and says "we are so worried you will be addicted that we are no longer treating you". I am so upset and confused. I never abused the meds. I need the meds for the high levels of pain. My husband says they are probably just nervous about prescribing narcotics and I am young (25) so that may also have something to do with it. I am now being sent to yet another surgeon. I feel that if they would just do the surgery like they are supposed to, I would not be in this mess. They are the ones who keep rescheduling me and sending me elsewhere. I did nothing wrong. They should continue to help me instead of getting rid of me as a patient. I have been on hydrocodone for approx. 4-5 months, and then percocet for about 6 weeks. Now they say "just take advil". Like that is going to help. I can't get in with the pm doc until the end of nov. at best. I have my appt with another oral surgeon at the end of nov. as well. What do I do till then for my pain?? I feel like they are lableling me as something I am not. I am even scared to go to the pain mgt. doc because the nurse told me that they are sending me there to "help me with my possible addiction". I don't have an addiction, I am in pain!!! I never abuse my meds. They are also closely monitored. I never take them to get "high" only to relieve my horrible pain. I don't get it and am very upset. I don't even drink! Why are they treating me like this?? They are the ones who recommended the meds and kept me on them for months. I understand that those meds are not intended for long term use, but if they are the ones who can't seem to get me in for surgery, should'nt they be responsible for helping me till they can do the surgery??? Is that legal to just ship you out even though we had a pain mgt. plan between my surgeon and my primary doc from the beginning that he would medicate me until surgery, since no other treatments were recommended?? I tried discussing this with the nurse, and she could not explain it to me. She would also not let me speak to my doctor. She just kept saying over and over again "We are worried about addiction. We don't know what to do for you any more," What types of treatments do pain mgt. docs do for TMJ except injections/physical therapy? My surgeon says no more injections and no jaw manipulations. Any advice?? Please help!!

[Tuckamore]

Hi Again,

Reading your recent post makes me angry too. Angry at the uneducated physicians in pain management, angry at the system and the DEA , angry most at those that have abused and continue to abuse prescription drugs. Those are the ppl primarily responsible for placing CP sufferers in the situation we are now. Your physician may be getting some heat from the DEA and your case may have nothing to do with it. He may just be trying to "rid" his log of as many narcotic cases that he can.

All that said I do beleive that what your physician is doing may be considered patient abandonment. I would certainly bring that up with my next call to your current physician. I would also request all your record and find another PCP. In defense of your physician there are agencies that are looking over all their shoulders. If they suspect they are prescribing too many narcotics they face lose of the licenses to practice medicine.

So my plan would be to obtain those records and locate another PCP. I would also call my surgeons office and explain what has happened to you. They may have some suggestions.

I would be most concern with the comment about your "addiction." This nurse obviously has no clue about CP. Her second comment is probably closer to the truth, they don't know what to do for you. So they are dumping you. Again please search for a new PCP. You may want to search for a new DO. I think they understand pain better than most PCP.

I wish you the very best. Please let us know how you are doing. Hang in there. We are here to support you and listen. Take care, Tuck

[tmjpain25]

Thank you all for your support! I have tried to reach the nurse at the docs office that "dumped" me, and no response for a whole week!! I have left messages every other day regarding my ref. to the pain mgt. doc. The nurse said they would call me early this week, and no call. I have been calling the nurse to see if she even did the ref. and it's an automated system and you can only leave messages for the nurse to call you back. I don't know if they are avoiding me or what. I am pretty upset, as I have been out of meds for some time now, and they were supposed to get me in to pain mgt. marked as "urgent" on the ref. information. I don't get it. Why are they avoiding me?? I also left messages asking for my records to be sent to me, and a medical release form. I need those records for pain mgt. and my surgery consult date at the end of the month. They asked me to bring them. I don't know what to do at this point. I guess I will try again tomorrow! Thank you all for your support and help. I am obviously frustrated and upset. I don't know why they would think that I could just take advil now, when for the last 4-5 months, they agreed I needed pain meds. I understand that there are regulations on docs writing rxs, but I need to get in to see the specialist asap for help if they are not going to help me. I will post any updates if I ever get a live person on the phone! Hope you all are doing well.

[Tuckamore]

TMJpain,

I feel so bad for you. I am sorry this is happening to you. Can you drive? If not do you know someone that could drive you? I would not call this physician anymore except to inform him that you are on your way to his office to obtain a copy of your records and a referral form. I don't know how long it has been since you requested your medical records but it shouldn't take more than a week for them to gather them for mailing. There is no excuse for this excessive tardiness.

I would than take the referral to the physician named on the form along with your films and records and tell then you need to be seen yesterday. And don't take no for an answer. Others will post with additional suggestions that may be more helpful

This, in my opinion is patient neglect. I'm 99% sure there are no laws that would support my belief but I can't help but feel that way. Hang in there. I know there are physicians that will treat you and help with your pain until you are able to have a surgical correction. You just need to actively search for them.  Best of luck and I'll be thinking of you. Take Care, Tuck

[Cindee56]

I read all your posts, and I'm so sorry.  I get some pain in my jaws and my ears from neck problems, and it is horrible!  It's the worst, so I can only imagine what you are going through.

I don't know what kind of insurance you have or if you need referrals, but is it possible to start all over with new doctors?  Maybe you can call the insurance company and explain about how they are treating you.  It can't hurt, I guess.  Also, do you have a dentist or oral surgeon or TMJ specialist that you were dealing with who might be able to help or at least write a letter or something.

The system in this country is terrible.  And, personally, I don't really trust any doctors.  There are so many bad ones and you have to search constantly for a doctor you can depend on who cares about your problems.  I am always looking myself for new doctors.  It's very frustrating.

I hope you can get some relief.  I know it sounds lame, but do ice packs help at all?  I use them for everything.  It kind of numbs the pain.

[sandee1818]

Go to the office or have someone drive you! This is pt abandonment and you have rights!
Make them call if they have not already while your there , sit and wait until you have an appointment set and the referral papers in your hand! If you insist they do their jobs they will/ If you have trouble that way just tell them you will see what constitutes pt abandoment in your stae and you will be in touch.
This will get them off their kiester!
Remeber they are working for you. You pay them for a service and if they are not provivding it then you do have legal recourse.

[tmjpain25]

Thank you for your kind and helpful posts! I spoke with my husband about it, and he said if I cannot get them on the phone by Friday morning, that he would call and if needed, go up there. I can't really get him to take me up there because he has been working crazy hours to try to make up for me not working, so he can't miss work. He is scheduled to do site inspections at work tomorrow, so he can't miss.
I do use ice/heat all the time to help a little. I take anti inflammatories around the clock. I try my best to do the jaw excercises that my surgeon wants me to do, but I can barely open my mouth. I have not been able to brush my teeth without pain from the opening! I cannot floss either because it hurts so bad to open my mouth for that long. I am a dental assistant who can't even take care of her teeth! This has gotten way out of hand.
I am scheduled to see the chief of oral surgery at a university hospital in late November. I hope that he will help me. I have already seen dentists, tmj docs, facial pain specialists, oral surgeons, an arthritis specialist, and primary docs. They all state the need for this specific surgery, but the only one who felt comfortable doing it is injured! The other chief of oral surgery I saw a few months ago, told me that I needed the surgery, but that since I am so young, they would not do it at their facility. They said that "this is a teaching hospital, so we cannot train the new surgeons to be agressive with someone your age." I got the copies of all the notes from that visit, and he wrote that I needed the surgery, but that someone else would need to do it, and then they referred me back to the original surgeon who diagnosed me. She is not healing fast from her injury, and they are saying maybe January, but more likely to be Feb. or March before she can come back to work. The new surgeon I am about to see has to verify my health insurance because it is out of network, and after my consult they will submit a pre authorization and it may take up to 8 weeks. I am so frustrated. I am in so much pain and have not worked in a long time. I am now trying to file for unemployment. My boss fired me a couple weeks ago due to my extended medical leave. I have never been fired. I have worked as a dental assistant for over 8 years. I just want to get better and get back my life.
I will bug the heck out of the docs office Friday am, and let ya'll know how it goes. Thanks so much for all of your great advice and comments. I can't wait to see the new surgeon in a couple weeks. I really hope he can help me. It does not look like I will get in to see the pain mgt. doc before the consult with the new surgeon. If they won't even call me back for the ref. information then I don't see how they will ever schedule my appointment. I don't want to go back to the ER. I owe them a lot of money from the last couple times I went too! They just said I need surgery and told me to see my surgeon. They also said they could not call in a surgeon to do the procedure on an emergency basis unless my jaw was actually broken. I am starting to feel like maybe I should just break it myself and then maybe someone will actually care! I won't really do that, but it has crossed my mind! :)
Sorry for the long rant. It feels good to have people to talk to about all this mess. Thanks again for all your help and I will talk to you soon!

[sandee1818]

Have your husband relay to the doc and nurses the severe amount of pain your in and ask them can they give you a presciption until your appointment. Also make sure he gets the paper work you need for the new Dr.
I am so sorry your in such pain, do not let the bills at the ER stop you from going to get help. You can pay what you can afford each month even if it is only a dollar a month.
Explain the situation to th ER doc and see if he will be willing to help you out some. I can't see a doc turning you away considering the circumstances. I know they do and this is because of the many who abuse them and their compassion for people in pain.

[bev62]

I am so sorry for your pain. My daughter just had tmj surgery and
I know the pain she had, and it was only on one side.  She had a hard time finding a doctor that could do the kind of surgery she needed because it was so bad.  She found one in Charlotte NC and he did an excellent job.  It was tough the first two weeks but now she is so much better.  They made sure she had the right kind of pain meds to keep her from suffering.  The surgery took about 4 hours. She stayed in the hospitol one night. They cut her from above her ear to the bottom of it.  She just went back for her month check up and the doctor was very pleased, she is opening her mouth twice as much as before surgery. She is 25, and they couldn't believe her jaw could be that bad at that age.  
I'm sorry you have lost your job.  You would think a dentist would be more understanding with this kind of situation.  Good luck, I will be praying for you.

[tmjpain25]

Update: I finally got thru to my primary care docs office!! I called an demanded to speak to the nurse and they said she was busy and they could give me her voicemail. I refused and said I would hold until she was not busy. Well, after holding for awhile she came to the phone. She apoligized for the long wait and said that she had recieved my many messages, and had already done the referrals, and was ready to fax my records today! I called to PM doc and they said they had recieved my ref. but needed to get more info from my doc, so they would call sometime next week. I then called the nurse a my docs office again, and she did another ref. to another pm doc in town. They are closed today, so I will get a call next week. They said they will not be giving me any more meds and that I just have to deal with it till I see the PM doc. I called my surgeons office and the nurse there said that my surgeon is not doing well at all and may even be retiring early due to her medical condition. She was told by her doc not to do surgery and she won't come back to work till a year from now. So that one is out of the question. I still have one more oral surgeon to see in late Nov., so I have to hope that he will help me. The nurse was nice enough to call the new surgeon a few times for me to see if they can get me in sooner, but they have never called back. So it looks like I am SOL till end of Nov. as far as meds and dealing with this pain. The PM docs said they don't have any openings till early to mid Dec. because they have to verify some info with my docs. I am so sick of all this. I will post updates of course. At least they finally talked to me to let me know about everything, but no more meds. They kept saying "you just have to deal with the pain until you see a new doctor". I have a very small amount of meds left and have been very careful about taking them when the pain is so bad I want to die. I have been in bed for days. I can't do anything with my son (2 years old) or clean the house or anything. My husband is fed up with all this and wants someone to "fix" me so that I can be normal again. At least when I had the meds, I could do some normal activities, like playing with my son, giving him a bath, dishes, laundry, etc. Now without any meds, I can't do much of anything. I just wish they would understand that if I needed the meds 6 months ago, and my condition is progressing, that I would obviously still need the meds. Ya know?? I totally understand the risk of addiction, and I am totally willing to do anything needed to help me after the surgery. But they first need to rid me of the pain so I don't need the meds, then deal with the "possible addiction". It just does not make sense. I am now totally afraid that when I finally do see the PM doc, they will have notes from my primary care doc, stating that I am some sort of an addict, and they will not help me either. I am worried that I am being labled something I know I am not and that it will affect the treatment I recieve at the new docs office. I now have a huge stack of every single note from each doc I have seen, as well as all my MRIs and prescription history to take with me to the new docs. Hopefully they will treat me like an actual patient and not some druggie. Will post updates next week. Thanks again for all your support!

[sandee1818]

I am so srry you are having to go thru so much pain. It is understandable that your doctor does not want you to become addicted but you have a medical problem that requires treatment. You could try another pcp and see if they can help you out with some meds and some do treat CP pts so it is worth a try. I know Tuckamore does not see a PM Dr but a pcp so its possible you could get some help thru another pcp.
Also you could ask if your Dr would be willing to give you some ultram it is better than having nothing at all. I take an extended release narcotic and I have taken just the ultram when I am out of my regular meds and it helps better than an over the counter medication.
Also you can try the ER, tell them you were taking a narcotic but want to try the ultram to see if it will jhelp and they will giveyou a script.
I have never been turned down at a ER for ultram, most docs are happy to write it instead of narcotics. Just an idea. Keep us updated and let us know if we can help any futher.

[Tuckamore]

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

[Mollyrae]

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

[roseczern]

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.

[roseczern]

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.

[Boxerluver]

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

[tmjpain25]

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.

[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.

[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.