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    Old 06-12-2004, 08:12 PM   #1
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    Question What to do when docs won't even prescribe pain meds?

    Hi Everyone,

    As much as I hate taking pain medication, I'd much rather have the option to, instead of dealing with it and not taking anything. None of my specialists believe in pain medicine (which I think it stupid, because if they really understand the pain, you'd think they would help a person out).

    Anyways, I try and take over the counter stuff, but ofcourse that doesn't ever help. Not even if I take one or two over the recommended dose.

    I just don't even know what to do or say to have something for my really BAD days that I can barely move or function. Any ideas?


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    Old 06-12-2004, 09:13 PM   #2
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    Re: What to do when docs won't even prescribe pain meds?

    Talk to your family doctor. MD's are more likely to prescribe something for your pain.

    Old 06-13-2004, 02:44 AM   #3
    Cymy Sue
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    Re: What to do when docs won't even prescribe pain meds?

    Hi Andy,

    I've found that most Specialist/Surgeons will not prescribe pain meds more than a week or so.
    If you are in a "Chronic Pain" situation, they would prefer a "Pain Management" specialist or clinic handle long term prescibing.

    I was referred to "Pain Management" after my Discectomy in 97.
    Almost 10 years after my Orthognathics & other surgeries in between.

    I assumed it was the times. Pain management was fairly new in this area at that time.

    Prescription pain medication is not what anyone would want to have to rely on and it does have to be Monitored and Managed very carefully. You want to be able to get off once you're better.

    Ann is right, too. Sometimes your regular Doctor, (one) who knows you and your situation will help you out for a short while.

    Sometimes, your age has a lot to do with it. They don't like to put young people on (possibly) addicting drugs.

    You had what appears to be a major reconstructive surgery 2 years ago that left you with a lot of plates and screws and now you have joint problems bad enough for a Surgeon to suggest a new" radical joint surgery".

    Unless you are very young, I don't understand why one of these Surgeons or Specialist have not referred you into some type of Pain Management.

    It seems most ot the "TMJ Surgicals" who have had one or more and are possibly going to need more, are beginning to get a little more consideration in this area.

    I have a couple of questions....................did you have joint problems before the reconstructive surgery? You may have posted this information and I missed it.

    Were you told that Reconstructive Surgery could traumatize or damage healthy joints and most always does cause already bad joints to get worse?

    Just curiosity on my part. In doing a lot of reading, I run across this quite often. People are not made aware of what "can" happen with all types Orthognathic Surgeries.

    I don't know your age or the particulars of your situation. It's possible your Doctors have decided there are risks for you to be given long term pain meds.

    A very kind doctor once told me to tell them how bad the pain was and the duration. Make them understand it never went away, it was unbearable and interferred with everything in my life. I did.
    It was ONLY after several damaging surgeries that they decided Pain Management was required.

    Take care, tell them how bad it is, find someone who will understand and explain to you why you haven't been prescibed something that will help.

    Don't abuse over the counter stuff. It is as dangerous as precription meds if not taken as recommended.

    Cymy Sue

    Old 06-13-2004, 04:44 AM   #4
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    Re: What to do when docs won't even prescribe pain meds?

    Hi Cymy Sue,

    Here goes a long post... so hold on!

    I'm 20 years old, I guess you could say I'm young. I went into the orthognathic surgery because the ortho I went to (and my normal dentist said...) "if you don't take care of your bite problem your joints will never go away. Once the jaws are in their new position, the joints will relax and have a chance to relieve the pain."

    I signed so many freaking consent forms, and from what I remember, not one of them said that I'd have even worse pain in the joints. The thing that really frustrates me is that I can't even feel my lower jaw or my lips. My nerves are so messed up that it's just a daily battle just to drink something without spilling it on me, etc. Not to mention, I played trumpet for 8 years (was 1st in the state, and in many competitions) and now I can no longer play.

    I honestly didn't think I was that nieve. I went around researching on the internet and unfortunately never found this board or else I would have DEFINITELY reconsidered putting myself through that hell.

    I don't have a regular doctor, as weird as that sounds... I'm usually NEVER sick, and the one I used to go to retired. That, and I go to college away from home, so I have to juggle where I go and drive sometimes 2-3 hours to get back to my specialists at home when I'm back at school.

    My new specialist didn't really call it radical joint surgery, but it was like taking the top part of my lower jaw (the part that fits into the condyle, I think) and shaping it to better assist in the jaw movement b/c the lack of discs and tissue.

    I DID have joint problems before the reconstructive surgery, but for me.. what really started the chain of problems were my braces, pre surgery. As soon as I had them on, that's when my neck/back problems got really severe and the dizziness was more frequent. AFTER the surgery has been... well, no fun. I didn't have HORRIBLE problems in my left joint, but my specialist seems to think that since my right joint is completely shot, the left is trying to make up and overcompensate for the right one. Makes sense to me..

    But, to reiterate, my doctors/surgeons didn't say that this surgery would make things much worse. To really tell you the truth, they knew I had TMJ and (were supposedly specialists) basically disregarded it. I figured they knew what they were doing, and everytime I went in I told them, OW! I HAVE TMJ!

    Oh, by the way.. my ortho said the same as another post I read earlier... "MRI's aren't really needed for a complete diagnosis" but he said "I already know theres a problem, but it's not that major." Well, tell me this... how the heck does he know this, and he should be eating some major crow right now considering my joints are so screwed up!!!

    I can understand about my age and pain killers, and I do respect that, but I need help in some capacity...

    At one time during finals week, and during some stressful weeks in college, the pain was so unbearable I'd just sit at my computer almost in tears because I just wished that I could be the normal college student, pulling all nighters and having fun with his friends - not sitting at his desk in pain and unable to really do what he wants to.

    My parents really do want to push this malpractice. I have to make sure to read ALL the papers before they proceed so I know exactly what's going on and what they supposedly warned me before the surgery. Regardless, I have some major beef with the ortho and he's gonna hear about it, trust me.

    Anyways, I guess that's enough complaining for me...

    Thanks for listening,

    Old 06-13-2004, 06:24 AM   #5
    Cymy Sue
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    Re: What to do when docs won't even prescribe pain meds?

    Hi again,

    Not so long a post and you're intitled. You should see some of my older ones and I've made quite a few.

    I know the agony you're going through and the frustration of being left with this mess to deal with on your own. I was older than you when I jumped into the "Promises of Surgery" to cure, "NO" information at all available and I had a life, too.

    I don't know of anyone who has been properly warned or advised of the possible & very real trauma to the joints from Orthognathic Surgery.

    I didn't need these (Orthognathic) surgeries. It's what they did in the 80's. My joints were bad and "THEY" were the problem. Bone Breaking did not help. They didn't know due to MRI's not being used at that time.
    I didn't feel I had a "case" due to this fact. You may have.

    Everything I had done, was considered "Proper Procedures" at the time. They always found out later, it was not what I needed.

    I was numb from my nose down since 1988. I understand that part, too. You can learn to live with it. It takes a while.

    You may have caught some of my posts regarding my current Splint. It was designed for people with multiple surgeries, no disc, abnormal joint structure, etc.

    I know it sounds impossible to some, but it has helped incredibly.
    Once everthing settles down from these surgeries and your body tries to heal, even the nerve irritation or damage, the muscles have spasmed so long and repositioned so much to compensate, they hinder the healing process.

    My splint was designed to support what's left of my joints and give the muscles a break. They have now calmed down to a great degree, even though they do the work of the joints, in function. They now have direction and don't overwork or over-compensate.

    With the intense (years of) spasming helped, I've had some return of feeling in my lower face and top lip. (I was told it would never come back)
    My top lip has normal feeling after 16 years and in my lower lip, I am feeling some sensation, not normal yet, but some feeling none the less.

    The theory is, the muscles had the nerves severely compressed. Now that this problem has alleviated some, the nerves are able to heal and/or send signals again.

    I was told by one Doctor, regardless of how long it had been, given the right conditons, the nerves would continue to try to heal and work correctly. Seems he was right.

    In my opinion, you do need to find someone to help you with the pain situation. I went to a really good Pain Center, with caring Doctors and was helped for a long time. They were very well trained and I had no problems getting off when I no longer needed it. I've done it several times in the last 7 years. Take it a while, get off and see if I could manage. Have unintended nerve regeneration or other set-backs and go back to medication.

    Someone should be willing to get you referred to a Center or Clinic for Pain Management. There are many ways they can help, along with medication.

    I wish I could help more. I can say I know what you're going through for the most part. It's not easy.

    Cymy Sue

    Old 06-13-2004, 06:45 AM   #6
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    Re: What to do when docs won't even prescribe pain meds?

    I feel for your situation!! I too was in desperate need for pain medication. I have had tmj problems for about 10 years, however, this last flare up I was in was unbearable. I know how the pain can overtake your life to the point where you just can't function anymore. I was 14-18 pills a day and still not getting AMY relief from pain. In my casee I am 40, but my dentist told me she was not in the business to hand out pills even though she was the one who caused my pain. Anyway, to make a lOOOng story short, I ended up leaving that dentist and found a new one and like Cymey said, I just explained to him my pain, I told him that I was taking over 14 pills a day and getting no relief. I intended to go from professional to professional til I found one who would listen to me. Luckily he was extremely sympathetic!!! He did put me on a pain med schedule that alternates a pain pill/muscle relaxer..........then 6 hours later another pain pill/ muscle relaxer. So he explained it to me that taking only 4 pills a day no matter how strong a pain med I am taking is SO much safer and healthier than taking 14 a day. I am able to go all day just taking the combo in the morning and then not again til bed. I am wondering if you can get something like this. You are not asking for meds to get high, and that is what infuriates me!! People who have severe pain are just what these meds are created for.

    If you have to, can you not go to a different dentist, specialist or regular dr? Someone has to listen to you so you can get out of this. Just getting my pain under control helped immensley in getting my life back and I was also able to focus better on getting my actual tmj under control. I have been on pain meds for 9 weeks now and I am not messing with the dose and my dentist has had no problem keeping me on them. There had to be someone in your area you can go to and get some help. It doesn't take much medication when you get the right ones. If you are having to take more than the recommended dose than you know they are not working for you.

    I wish you the best and hope you can find some answers.

    Old 06-13-2004, 09:40 AM   #7
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    Re: What to do when docs won't even prescribe pain meds?

    I'm 20 years old to and college has been a real headache for me. I know how you feel I couldn't even concentrate when I took any test because the pain was so excrutiating. This throbbing pain would persist year round to where studying became less frequent and my grades went down the tubes. The worse thing was my parents thought I was being LAZY! I felt very alone at that point and began thinking that they were right, but the pain got even worse...

    Whoever is treating you should prescribe something to you especially if you have had this condition awhile. You shouldn't be in pain while you are being treated or you won't heal, tell them that. Its a vicious cycle, the pain occurs because of your TMJ and and the stress aqcuired with pain intensifys the TMJ symptoms. I hope you find someone who can prescribe u painkillers.

    Old 06-13-2004, 11:35 AM   #8
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    Re: What to do when docs won't even prescribe pain meds?

    Thanks everyone! I'm going back Tuesday to the specialist and I think I'll hear more about his proposed treatment, so... I'll keep you updated!! I'm glad I'm not alone - sometimes the best thing about this condition is knowing that other people are out there and understand, even if they AREN'T doctors. Sounds weird, but I guess you have to try and be positive about it, right?

    Thanks again,

    Last edited by MSUGuy02; 06-13-2004 at 11:36 AM.

    Old 06-19-2004, 06:52 AM   #9
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    Re: What to do when docs won't even prescribe pain meds?

    It's important to find a GOOD Pain Management Clinic. In 2000, when I was 13, the Pain Management Center at the University of Florida almost never let me see the same doctor twice in a row. They each had different opinions, even saying that I had been misdiagnosed with TMJ when I really had Trigeminal Neuralsia (or however it's spelled). They did a test using cocaine to numb my nose, then shot liquified cocaine down my nose, which was suppose to allow a nerve to absorb it and relieve the pain. Because my pain still persisted during and after the proceedure, they decided that I--surprise, surprise--really did have TMJ. Within a month, they had me on 300 mg of Neurontin, 30 mg of Baclofen, and 25 mg of Vioxx a day. Six months later, my doseage of Neurontin rose to 1800 mg. They also had to put me on Adderall just so I could focus and keep myself from falling asleep. After my 6 months were up, they decided that there was nothing else they could do and that my primary care physician could write my perscriptions for me. Four years later, I take 4800 mg of Neurontin, among a lot of other things, and can function with it rather well in the morning, but by mid-afternoon/late evening, I'm so wiped out that it takes SO much effort just to move out of the recliner. With all of my pain medications (and the meds that are suppose to counteract their side effects), I'm up to nineteen pills a day, I believe.

    As for college...I move into my dorm room tomorrow (also my 18th birthday), and begin classes next Monday. I'm not sure what to expect, but I have a feeling that my TMJ problems will not help out when stuck in stressful academic situations. I did poorly in high school. (I consider a 3.0 on a 4.0 grading scale poor.) Being ambitious puts a damper on things when I know my jaw will get in the way of certain achievements (but not all). I'm smart but it takes a considerable amount of time and effort to just get my thoughts together. Plus, when stuck in a situation involving discussions, I know that I can only say a limited amount before my muscles tighten up and begin to send tingling, achy feelings all around my face, neck, and shoulders. Then my jaw fights against me because it just doesn't want to move.

    Before all of this happen, I was very outgoing, talkative, and "the life of the party." Now I prefer to be alone and quite.

    I wish you the best of luck! I'm currently trying to find some new medication routes, but I doubt my new Pain Management doctor's abilities as she's never treated someone with TMJ. It's always a long road when one's jaw joints are involved.

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