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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 10-31-2008, 06:50 PM   #1
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Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

Hello. I am new to the forum, and I want to share my story and find out what others think. (I posted this same thing in the pain mgt. section of the forums, but wanted to copy and paste it here as well) I am 25 years old and have suffered from chronic TMJ pain/migraines for years. Earlier this year, I was told I needed surgery to replace the joints on both sides. I have had a splint for years, and have seen many different specialists. I have been told by all of them that the only thing that will help me is to do the surgery. I have a deformity in my jaw and the joints are dissolving. I have seen numerous dentists, facial pain and tmj docs, cheifs of oral surgery at universities, and regular docs. I have been taking vicoden for pain for 4-5 months, and then they prescribed me percocet for the last 1-2 months. I am also on muscle relaxers and anti inflammatories. I use ice/heat, non chew diet, and jaw exercises daily. My primary care doc was the one who was prescibing all of my meds, and we just found out that my surgery has been rescheduled once again. (my surgeon was injured recently and is not recovering as quickly as planned). No other surgeons in town want to "touch me" because my case if "complex and difficult". I am awaiting yet another consult with another surgeon out of town later this month. Hopefully I can get in with them asap. I spoke with the nurse at my primary care docs office yesterday and was told that they do not want to continue my pain meds any longer, and they referred me to a pain mgt. doctor. I won't be able to see him until late Nov. early Dec. They said they refuse to give me any more meds, because they are afraid I will become addicted. I am upset because we talked about this issue beforehand, and they agreed with the surgeon that we will deal with any issues after I am done with surgery and pain free. I totally understand that percocet is very addictive and that it is not for long term use, but they have failed to get me in for surgery in a timely manner, and I don't think that I should be punished for that. I have horrible pain and it never ends. I get relief from the percocet, but no other procedures have helped (injections, physical therapy,etc.). I am now being treated like a junkie and I don't like it. I do not abuse the meds, and they are closely monitored. I only take them to lead a somewhat normal life. I am on "bedrest" and have been for over 4 months. They keep rescheduling the surgery date and I don't feel like I am getting proper care. The pain mgt. doc wants to do injections even though I told them it only makes the pain worse afterwards. What other treatments do pain mgt. docs do for tmj? I have had all sorts of injections/splint therapy, etc. I would need more meds if I did the injections. I have swelling and sharp stabbing pain. It feels like a hammer is beating a nail into my jaw/head/temple (mostly on the right side, the left side just feels like a throbbing pain.) I just had another MRI 2 weeks ago. The results show fluid build up in the right side and that I have no tissue left in the right side of the joint. My surgeon advised not to do any more injections or manipulation of the jaw and wants my primary care doc to give me meds. The primary doc does not want to because they don't want me to get addicted. The pain is totally unbearable without pain meds. I finally found one that helps dull the pain and now they are taking that from me. This is after months and months of trying all sorts of meds. I am so scared and upset by all of this. I want to have my surgery so I can get my life back. I don't know if it is because of my age (25) and they think I am a junkie or what. I don't even drink and I haven't had even a sip of alcohol since I was 21. I have worked in the dental field for over 8 years, and I don't know why I am being treated like this. Any advice? Anyone else have the same situation? I just want to talk to others and get opinions on all this. I would appreciate any feedback greatly!! Thanks for listening to this super long rant. Like I mentioned at the beginning of this post, this same post is also in the pain mgt. forum, but then I found this one and wanted to post it here too. I need answers and advise badly. I don't want to live like this anymore. I know I cannot cope without meds to dull the pain. I don't care if they don't use narcotics or not. I just need meds that actually help the pain. I have tried so many with no results. What are the best meds/treatments for this? My case is very bad and hurts like crazy. Please help. Thanks!

 
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Old 12-03-2008, 04:08 AM   #2
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Re: Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

Hi, I completely understand your situation/pain!! I've been having this throbbing/sharp pain on both sides of my face from my jaw all the way up the temples and into the forehead, causing a intense constant headache non-stop. I've had bad headaches for years and years and just recently have all this pain from the jaw started. I've been taking vicoden for my headaches from my doctor because they don't know what else to do since everything else they've given me doesn't work (migraine pills, topomax, etc). Now with the jaw pain radiating to my forehead causing more intense headaches, the painkillers aren't working. My doctor gave me those along with flexiril and these muscle patches to help relax the muscles in my shoulders. they seem to help but when it all wears off I'm back where I started. The flexeril makes me tired so I only take it at bedtime. My regular doctor has a new PA working with him and I feel like for the first time ever someone understands me. She says "you're just a type of person that gets headaches, they could be one type or 2-3 types all together". She told me I should go to an oral surgeon (which I'm going tomorrow) and she gave me meds in the meantime. I think you just need to find a doctor that will understand what you're going through. I understand the concern for addiction but it clearly doesn't sound like you're that type. I know that there's a huge addiction rate with these pills but as you said they automatically assume you're one of them because of your age. A good doctor would work with you and not decide what's best for you without listening to you in full. I hear this story from many people that their doctors just dimiss them without hardly listening to a word you're saying; I've been to many of them. One of my doctors in the past says to me "I find it hard to believe you have a headached everyday, I think it's in your mind"!! I almost flipped out on the spot!! You think I like to live with these conditions??!! I come to you (meaining the dr) for you to write me off as a joke! I had a meltdown last night with my husband; I can't stand this pain anymore! I have two small kids and it's torture to take care of them lately. the pain has been so severe lately that I don't eat and all I want to do is lay down. Before having my son a year ago, I was 3 sizes smaller than what I am now and I'm trying to lose the weight. When I lost the weight just before getting pregnant I would excerise for an hour a day (lost 30lbs in 5 mos). I love to excersie but with these constant headaches and facial pain, it's impossible. I did breakdown and excersice last week and boy did I regret it. During my workout my headache became so severe that I felt like someone hit me with a sledge hammer. Immediately after, my teeth were throbbing and my excrutiating headache persisted for 3 straight days non stop. At that time someone gave me percoset 10/325 and they werent' helping at all. This kills me because I love to workout and really need to lose this weight to get back to where I was prior to the pregnancy and I just feel like I keep hitting a road block to get there.
Keep searching for a doctor that will work with you and understand your pain!!

 
Old 12-03-2008, 08:01 AM   #3
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Re: Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

At first that is all every dr wanted to do - prescribe me meds- and I was ****** that they didn't seem interested in fixing the actual problem. My dr seemed pill happy but eventually I did try whatever he offered - went through a gamut of trial and error - most did not work and those that did left me in a daze that I couldn't remember my own name. I eventually made my way to a Pain Mgmt clinic at a dental university and they prescribed baclofen and triavil - they dull the pain and do not remove it and make it easier to live with it. After 3 months I went back to my primary med dr and he started prescribing me the meds to save me the trip to the university. I too tried injections and other forms of therapy like accupuncture and ultra sound - nothing really helped and actually seemed to aggravate it more. Have you contacted the oral surgeon you were thinking on seeing for the surgey? - they are often authorized to prescribe meds.

We live in a sad world - at first drs were guilting me into taking the drugs saying I wasn't trying to feel or get better - I must want to be sick on some deeper level, then when I went on the drugs, one of them is an anti-depressant (triavil) that affects the brains pain center - and there is a stigma associated with being on a anti-depressant with people in general and then we are faced with the long term side affects of these drugs and we have to deal with trying to wean off of them at some point - its a catch 22 vicious circle in which no matter what we do we lose.

 
Old 12-04-2008, 08:08 AM   #4
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Re: Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

Thank you all for your response. Yes, I too have constant headaches that last all day every day. I was told it all stems from my tmj disorder. I am seeing a surgeon at a university hospital in late December for arthrocentisis. They are going to flush out the joints on both sides at least 2-3 times over a 4-6 month period, before they will even do the joint replacement surgery that I need. They said that due to my young age, they will not do the surgery on me until I have tried the other procedures first. I have been told that this probably won't help me at all, but we have to do it first. I am very frustrated. I have been told by about a dozen doctors now that I need this surgery in order to get out of pain and go back to work. I have been out of work for over 5 or 6 months now. I am in so much pain all the time. I cannot function without meds. My primary care doctor will not even give me Firoicet for headaches anymore. He cut me off all meds. He ref. me to pain mgt. specialist, but they cannot see my till late Jan. The surgeon has a policy that he won't rx meds until after they do the procedure in Dec. and he will only give me a few to get thru. I have to see pain mgt. doc to get any meds. I am so confused because I was given hydrocodone for about 3-4 months, and then given percocet for about 2-3 months. Then he just said no more meds of any kind. He won't even see me for a visit. I have left messages to complain, but nothing. I asked for my records, and they stopped in July. the did not give me any records for what meds I was given and why after that date. It's like they dissapeared. I called the pharmacy and got them to fax me my entire prescription history. I then called them doctor and told them that I had the records, and wanted to know what is going on. I told them that each time I called the nurse to tell her about the pain from July-Nov. I asked to be seen in the office. She told me each time not to worry about it and she would just call in or write a rx. I asked the new nurse (the one I spoke with each time has been let go) if those calls/conversations were even documented. I asked why I was being treated like this and I think there is some confusion. I think that the old nurse did not record things correctly and this may look bad. My new surgeon was asking me what meds I have been on, and I told him, and he said that there is no record of that with my primary care doc. I immediently called the pharmacy to get those records. It is like the doctor or nurse made a mistake and they are trying to cover it up. I don't know if the nurse that was fired had given me the rx's without the doctor's knowledge, or if the coversations were not documented so they don't know the whole story. I should hear back from them today, so I will let you know. Something is going on. They said they have no record of me ever asking to be seen, and that is weird. I have the phone calls written down, I wrote down what I wanted to make sure I said to the nurse, dated it, wrote down the time, and wrote everything she said in response. So I have all those notes to go by if they question me. I asked them if he would even continue my care with my anxiety and birthcontrol, mirgraines, ect. or if I need to find a new Primary care doc. I will let you know what they say. They are ignoring me and I don't know why. I did nothing wrong on my part, but I think they do not have all the info. I think something happened when that nurse left, because no one seems to have a clue what is going on with my situation. Did she not write down anything at all?? So frustrating! Now I have to start all over again. At least I have everything written down, so I can reference it and let the new nurse know what happened. I told that nurse every little detail and every appt. date. Now they are saying they have nothing on me since July?? Weird. Anyway, thanks for your help. I will let you know what they say and how my appt. goes. Take care and I hope you all feel better soon.

 
Old 12-05-2008, 04:40 AM   #5
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Re: Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

It sounds to me that you need a new doctor!! If they can't or don't have the ability to keep up to date accurate records then I'd be scared to go there to begin with. You're just like me; painkillers are the only thing that helps me with these constant daily headaches. And I will continue to have these headaches until the TMJ is in controll/corrected. And because of these constant headaches and other daily chronic pains; I have anxiety all the time trying to deal with it all. As I said I have a great doctor that understands my situation and knows that I'm not in it for the pills but for the relief! You really really have to find a doctor that is compassionate and understanding of your situation. I feel like lots of people (family, friends and doctors) dismiss your pain and situation because they can't understand how someone can have a headache from the moment you wake up until you go to sleep and even your sleep is disturbed w/ a headache! People can't comprehend this so they think you're overreacting and being ridiculous! People with the same situation such as this board I feel are the only ones that truly understand what you're going through!!
I would find aother doctor in the meantime while you're waiting for your pain mgmnt appt. to get some sort of relief!
What steps did you take to take care of your tmj? I went to an oral surgeon yesterday (primary doctor recommended) but I left there feeling like I'm still in the beginning. Even though I've had these headaches for years not realizing it was associated with tmj until recently; I'm in the beginning stages of getting the tmj controlled/corrected. He's going to give me a thin plastic molded splint and if that don't work then surgery. I'm really confused on how to go about with this tmj. he didn't explain what the surgery is or does he just surgery. I don't feel like he was informative at all or concerned; I felt like I was rushed and just another # or patient passing through the office and this was the "stamped" procedure; splint then surgery, nothing was explained.
How did you start or go about your pain??

 
Old 12-06-2008, 08:49 AM   #6
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Re: Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

Thank you for your reply. Yes, it is very frustrating and no one really understands. My husband feels bad for me, but says I complain too much. Still no word from the doctor. I have tried everything for my tmj. I have seen a tmj specialist, who did injections, custom splint, meds, etc. I did physical therapy, tried anti deprassants for stress, anti axiety meds, muscle relaxers, anti inflammatories, steroid shots, numbing shots, etc. I have now seen: 3 dentists, 1 facial pain specialist/tmj doc, 3 oral surgeons in my town, 2 out of town at universities, a regular doctor, and a neurologist. I will be seeing a pain mgt. specialist in mid Jan. I have been in the dental field as a dental assistant for over 8 years, so I got to see all the dentists and specialists easily, but they still did not feel comfortable doing my surgery. I did have great help with the referalls, but now am starting all over because the great surgeon I had scheduled with has now retired due to her injury. She was the best in town. She is amazing. I wanted her to do it, and no one else felt comfortable doing it. Now that she is out of the running, I have to see a surgeon who I do not feel comfortable with. He won't even do the surgery, he wants to try the joint flushing over a 6-12 month period first. Even though he said it "has a 90% failure rate in my case". I am ******. I am tired. I am broke. I have not been able to get unemployment or disability. I cannot work. I could probably work from home, but I have not found anything that I can do that is legit. We had to get rid of one of our cars, and now we only have one vehicle. I have a 2 year old, and have to keep him in daycare because I cannot keep up with him when I feel bad. I don't know what else to do. I am out of options. I am just gonna have to get a crappy job at a desk after the joint flushing procedure and pray that I can at least work part time. I know when I was working and I would get the horrible pain at work, I was scared to drive home. I would barely make it home, while vomiting on the way. I do not feel like I should have to do this. I want to get better and I am frustrated. I cannot do the job I am trained to do while in pain, or while taking meds. I cannot work on patients while like this. It is a liability. I have training in insurance, billing, medical, dental, but just cannot even think when the pain is bad. Who wants to hire someone who has to miss work a lot and has to leave due to pain?? I also cannot function completely with meds. I don't want to be responsible for messing something up when I am sick. I don't know what to do anymore. I called the old surgeons office Thursday and left a message, begging them to help me out. If she is retiring, I asked if they could try to help me find another surgeon out of town/state that might do it. I hope this works. Maybe she will come back after healing next year. I hope so. I can try to joint flushing until then and maybe can eventually get disability or something. Oh well. I am trying to find a new primary care doc, but that will take time. They have not even tried calling me back yet. I have left messages since early last week. Whatever. Anyway, good to talk to others about their situations. I don't feel as alone. I am glad to have support. thanks so much for all your input and help. I hope you all find treatments that work for you. Good luck. Talk to you again soon.

 
Old 12-06-2008, 08:44 PM   #7
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Re: Tmj disorder. Chronic pain. Ref. to pain mgt. doctor

Don't mean to butt in but was wondering about your inability to qualify for disability - did you apply and they denied you or was it b/c of other reasons? It took me 3 years to finally get approved for SSDI - from what I understand everyone who applies in NY is automatically denied unless they have a terminal illness - so I had to retain a private SSDI lawyer (NY will also appoint public defenders for free) - but the appeal process - at least in NY - requires you to go before a judge and at least then its a person who gets to see you and speak with you directly regarding your "disability" and experienced lawyers know what info to bring to the judges attention. NY also limits the amt of the fee lawyers can charge for SSDI appeals to about $5K - so it was worth it since once approved, my benefits were retro to when my tmj first started and I had to stop working. Just thought I would mention all of this in case you were denied SSDI and didn't pursue it further.

 
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