TMJ Friends

You have gone from the stigma of “always being sick” to the stage of being “chronic” by Mr. Websters definition it means: “constantly vexing, weakening, or troubling, frequent recurrence, being such by habit and not likely to change.”

In this age of political correctness there must be a term that better describes what it means to be a “chronically ill” patient. On this vast highway of information, we come across many back roads that deal with the chronically ill patient, written by both professionals and patients themselves who deal with this issue on a daily basis. There are a million and one theories (some tried and proven) on how to treat the emotional aspects of this enigmatic condition. Since it is so varying in type and embodies so many disorders and diseases, the approach must be tailored to the individual.

To generically call all patients with recurring illness of long duration as “chronically ill,” is like throwing everything but the kitchen sink into the pot and calling it Stew.

Some people with a chronic illness function well on a daily basis, while others are totally disabled. However, one area that every person with a chronic illness CAN identify with, is the emotional rollercoaster surrounding diagnosis, treatment, acceptance, and incorporating their illness into their life.

There is a myriad of emotions that are natural after the diagnosis of a chronic illness. Anger, denial, hopelessness, fear, guilt, confusion, grief and avoidance just to name a few. All are normal, and not everyone experiences all of them. They don’t necessarily come in a specific order, and may re-occur at any time.

• Anger - Why Me?
  Your anger often leaves you with a sense of shame for becoming a person that you don’t recognize anymore. Unexpressed anger is not healthy, and this is a good time to seek support and advice. Perhaps a therapist or a support group who understands and will offer the tools to help you redirect that anger in a positive direction would be beneficial. Admit your feelings and share them with family and friends. You may not be able to avoid getting angry, but you sure can learn how to respond to it in such a way that it doesn’t consume you.
• Guilt - I am neglecting friends and family. I am too needy. Did I do something to cause this?
  Learn how to be humble and ask for help, because people love helping. It is also important that you teach people how to help. Not all your friends and family can be there for you in the way that you may think you need. Remember that some friends may not be able to give you the emotional support you want, and they may not feel comfortable with your illness… but they also may have other things you need, such as the ability to make you laugh. Keep and nurture them.
  Understand that you really have no control over an illness; don’t let it prevent you from getting the help you need because you feel as though you don’t deserve it.
• Confusion - What is this that I have? What is this doctor saying to me?
  The big picture of things becomes overwhelming, so instead look at the small snapshots. Study, research, and learn as much as you can so you are able to actively participate in your healthcare. Drive your own bus, and it will give you sense of empowerment.
• Grief - For the loss of the life that you once knew.
  Dwelling on how life was in the past results in a feeling of hopelessness. Small things can take on new meaning…. a hot bath, the start of a new season of Project Runway, a short walk, a hug from your child. Future plans mean what you are doing today, not next week, but the next hour! If you compare yourself to the person you were once, you will never measure up. Set new goals and standards and recognize your limitations. Make a list of what you like about yourself and be good to yourself in thoughts and deeds.
• Hopelessness - It will never get better, I will just give up.
  At some point you make a conscious or unconscious decision to either control your illness or to let it control you. It may seem that all you do in your life is overcome one obstacle after another, but once you learn that these obstacles ARE your life, you can learn ways to live with them.
• Denial - the refusal to accept the illness.
  In some cases this is not a bad thing. After diagnosis, it gives you the chance to pull yourself together, and gather the strength to face the future head on. Denial may also cause you to keep shopping for a doctor who will tell you what you want to hear or you may even search for that elusive “quick fix.” It is important to accept that your illness is a long term part of your life. This begins with learning how to integrate your illness and its limitations into your life. It is a long process that begins with short term solutions, that must constantly change to help you adapt to your current state.
• Steps backward
  It’s okay if you take steps back in order to go forward. Sometimes you have to step back and re-evauluate the situation, and change your life accordingly. It does not mean you have failed.

A friend once said to me “while I will never be thankful that I got this disease, I will always be grateful for what I have learned from it.” I truly believe that, and I hope one day you will, too.

How to Get Help When You Are in Pain

If you accept the standard of care that medical providers deem appropriate for you, you are not necessarily going to get the standard of care that you deserve. You HAVE to be more vocal. Medical care now is a partnership between medical professional and patient. Gone are the days when treatment was dictated to the patient and the patient had no other options. Hospital personnel and many medical professionals are overworked, underpaid, understaffed, and in many cases, inexperienced. That is why YOU as the patient, owe it to yourself to be as informed as possible BEFORE you have any procedures done or go in for any type of medical treatment. It is our responsibility as patients to take advantage of the vast resources that we have available at our fingertips.
For most patients, pain management is something that is not always adequately addressed.

• Patients are afraid to admit that they need help
• Patients are afraid to ask for medication
• Doctors are afraid to prescribe because of restrictions placed on them by the government
• Doctor/Patient relationships are short lived because of referrals, so doctors do not know and/or trust the patient enough to prescribe pain medication
• Lack of knowledge by the patient about what is available.

Who Can Treat Pain?

There are pain management specialists who are board certified in pain management. Who you choose to manage your pain will depend on your specific needs. For example, a chronic migraine patient might choose a neurologist to treat his or her pain because the neurologist has more experience dealing with headache patients. Once you choose a pain management specialist, it is usually expected of you to only see that physician for your pain needs. Sometimes the specialist will have you sign a contract, which states that you will only take pain medication from him or her and will consent to random urine testing, pill counts, or other measures that protect both you and the doctor. Some physicians will write you a prescription for emergency room visits that dictate what you should be given in the event of an emergency, what emergency room you should go to, and what medications you are on. This precaution makes emergency room visits much easier.

How is Pain Treated?

Pain management can be trial and error. Medications can be tried for a variety of different symptoms. Most patients find that a combination of different drugs is the most effective therapy. Some of the different types of medications used for pain management are:

• Anti-inflammatories - These medications help reduce swelling and pain. Examples include Relafen, Mobic, Celebrex, Ibuprofen, and Naproxen.
• Muscle Relaxants - These medications help to reduce muscle spasms and tightness. Examples include Soma, Zanaflex, Flexeril, Baclofen, and Skelaxin.
• Nerve Pain Medications - These help to reduce pain due to nerve damage and can also be used to lower pain as a whole. Examples include Neurontin, Topamax, Keppra, and Lyrica.
• Anti-Anxiety Medications - These help to reduce anxiety due to pain. Examples include Valium, Klonipin, Ativan, and Xanax.
• Anti-Depressants - Are used to help with depression due to pain as well as reduce pain in general. Examples include Lexapro, Wellbutrin, Paxil, Nortriptalyine, Elavil, and Prozac.

Opiates

Opiates are used to reduce moderate to severe pain. They are agents that bind to opioid receptors, found in the central nervous system. They are most commonly used for moderate to severe pain.
Short acting opiates, such as Vicodin, Lortab, and Percocet are used for acute or break through pain and are usually prescribed for short periods of time. However, if a patient is taking an appropriate amount, the doctor may choose to keep him or her on the medication for longer periods.
If a patient has been in pain for longer than 6 months, is anticipated to have chronic pain for a long a period of time, or their current short acting medication is inadequate, they can be prescribed long acting opiates. Long acting opiates are slowly released into the system over a period of hours or days depending on the particular medication. Some examples are Oxycontin, Duragesic (Fentanyl) patches, MS Contin, and Methadone. These medications can not be stopped abruptly. They need to be slowly tapered off to avoid discomfort (withdrawal) and side effects. Dosing instructions are for your protection and need to followed very carefully to avoid any potential problems.
In the recent years, there has been a lot said in the media regarding some of the medications used to treat chronic pain since they can be habit forming. There has been and still are many misconceptions concerning addiction, dependence and tolerance with these medications, as well as a doctor’s hesitance or willingness to prescribe them. If a chronic pain patient follows their doctors orders, keeps their medications out of the reach of others (this may involve keeping them under lock and key), signs a pain contract, and is compliant with other precautionary measures, there usually is no danger in taking opiates for the treatment of non-cancer chronic pain.
However, as with any medical treatment, it is best to be knowledgeable about terminology and aware of possible issues that could present. There is an enormous difference between addiction and dependence. They are NOT the same thing.
The dictionary describes addiction as the “compulsive physiological and psychological need for a habit-forming substance.” Dependence and tolerance are also present. And dependence is described as a “physical dependence,” where the body will develop withdrawal symptoms upon stopping the substance. Tolerance is defined as “diminution in the response to a drug after prolonged use.” Many chronic pain patients experience a time when their medication does not work as effectively and they must increase the dosage of the medication or switch all together to continue receiving pain relief. Many chronic pain patients are afraid of addiction, when that seldomly occurs. Less than 1% of chronic pain patients end up addicted to pain medication. Prior drug abuse tends to increase ones chances to becoming addicted to pain medication.

It is important for chronic patients to see physicians who are experienced in treating with opioids. Some doctors are not educated about the differences between addiction, dependence, tolerance and pseudo-addiction. Pseudo-addiction is when a patient displays all the warning signs and symptoms of addiction, however, is actually just under treated and needs their pain managed better.

It is also very important to educate family and friends about the differences explained above. This way they will understand your treatment and not become suspicious or difficult because of your pain management. Taking your family with you to the doctor is encouraged so that they can ask questions and listen to your treatment plan.

Other Types of Treatment

Many patients find that with a chronic pain condition, a multi-disciplinary team approach works best, meaning that one would see different physicians and have different treatment for many of their symptoms. Some of the other types of treatment include:

• Physical Therapy
• Trigger Point Injections
• Massage Therapy
• Acupuncture
• Chiropractic
• Counseling alone or with family
• Support Groups
• Other injections such as facet blocks, nerve blocks, etc
• Biofeedback, relaxation therapies, stress management
• Lifestyle changes

Chronic pain can be caused by a myriad of different problems, such as arthritis, back pain, migraines, abdominal pain, bowel disorders, pelvic pain, fibromyalgia, reflex sympathetic dystrophy, lupus (and other systemic autoimmune/connective tissue conditions), multiple sclerosis, along with TMJ disorder, facial pain, myofascial pain, and other related conditions.
Medications also work for different conditions, and can be used for different problems or symptoms than what is listed above.

If you have questions about your pain, treatment, medication, side effects, dosing, etc please contact your pharmacist or physician.

Chronic pain affects more than 75 million people in the United States and costs over 100 billion dollars per year. It is an important issue that often overlooked and under-addressed by both patient and doctor. Hopefully with advent of the internet and more knowledgeable patients & physicians, less people will suffer needlessly in pain.

If you have any questions about pain management for TMJ disorder or other painful conditions (such as back pain, fibromyalgia, chronic fatigue syndrome, migraines, atypical facial pain, myofascial pain, reflex sympathetic dystrophy - RSD, chronic regional pain syndrome - CRPS, etc) the questions page on the website lets you know how to submit questions that will be featured on the TMJ Friends blog.  For support from other patients, visit our message board.

Meanwhile, take care of yourself and don’t forget to get a good night’s rest, try to eat nutritious foods, and exercise if you can.

I am not really sure where my story begins, but I do have two suspicions. One is in 1988, I had to have my wisdom teeth pulled because they were causing problems. They were very impacted, and I could not open my mouth more that 10 mm. After they were pulled, I then had full range of motion.

The next suspicion was in 1998. I was hit very hard in the back end of my husband’s pick-up truck and hit my head on the back glass. After the accident I had severe headaches for 3 weeks straight. Nothing I did would relieve the headaches. I couldn’t even think for myself. My husband finally insisted that I go to the emergency room to have a mri done. All they scanned was my brain, and it only showed a mild concussion. They gave me some pain meds and sent me on my way. The headaches did go away for about a month, but then returned with a vengeance.

Now I have headaches every day. This is the year 2006 people. My jaws started popping about 3 years ago, and I never thought any thing of tmj til I went to the dentist 2 years ago, and he told me that I might have tmj. He sent me to a specialist who I have been seeing since. Been through the splint therapy and still going thru it and the so called pain therapy. My specialist finally agreed to send me to get an MRI. Got my reading back on Tuesday April 4th. The mri showed a torn ligament in my left jaw as well as spurs on both jaws and total derangement of both discs and of course the adhesions. I am actually relieved that it is this and not brain tumors. ( you see my dad died with a brain tumor in 1989, and my sister is in remission from brain tumors.) Now, the next step for me is to see a shrink, to see if stress is the cause of the problems at hand. The date for that is May 1st. My doc wants to do surgery. However, I am planning on a second opinion first. If it will make the headaches go away, I do want to do the surgery. We will see what is to come. By the way my left jaw has gone into lock down. My right, well lets just say can’t do much without the left. There will be more to come as I journey through this thing called TMJ.

To read more stories of people like you, visit our TMJ patient story page.  As always, if you have any questions, comments, suggestions, or tips, let us know!

TMJ Disorder: Where Do I Begin? Part I
What Type of Doctors Treat TMJ Disorder?
This article is the first in a two part series for people who have just been diagnosed with TMJ disorder or those who still have questions about the process. Since TMJ disorder effects so many bodily systems and can produce so many different symptoms, a variety of doctors treat the disorder. Through much trial and error, we have found that a team approach is the most beneficial and produces the best results. This article will go over the type of doctors you may encounter in the course of your treatment.
These doctors will be listed chronologically, however, since each person is different, your specific treatment plan could be different as well. Some of us start with a neurologist because of the headaches brought on by TMJ disorder, others start with a surgeon because their problems were brought on by trauma. This will just attempt to summarize each doctor’s role in the treatment of this disorder.

The first stop in many patient’s treatment is their general or family dentist. The dentist will check for a number of signs that indicate TMJ disorder is present. These include tooth wear from grinding or clenching. He may also begin by listening to the jaw with a stethoscope to check for popping, grinding, or any other sounds that may not be consistent with normal jaw function. He will palpate and apply gentle pressure to your face, neck, shoulders and/or back. Depending on your dentist’s training or specialty, other tests might be done, which will explain later. If you do have any of the symptoms as explained above, your dentist may do one of several things. He may fabricate a splint which prevents further tooth wear and helps pain. Keep in mind that the splint is a trial and error process. It will require many visits to adjust the splint to get maximum benefit. You might also need to try several appliances before finding the right one for you. The dentist might also prescribe medications such as anti-inflammatories and muscle relaxants, or he may refer you to our next professional, the “TMJ specialist.”

The TMJ specialist is a dentist who has usually had extra training to help him become more familiar with TMJ disorder. It is always a good idea to ask the dentist what training he or she has had. Please refer to our article entitled “How to Choose a Doctor” for more information. The TMJ specialist will most likely do a more extensive examination than your general dentist. He might take different types of x-rays such as a panorex or tomogram, or order an MRI. You may question why to see a general dentist if you could just see a TMJ disorder specialist.

Most cases are manageable at the general or family dentist level, and do not need further intervention from a more specialized doctor. Keep in mind that these cases can be managed without invasive or irreversible treatment such as grinding your teeth down or changing your bite. If this is proposed, you may feel the need to secure a second or third opinion. The TMJ specialist will be your primary diagnostician based on results from tests, physical examination, your symptoms, how your teeth fit together, etc. Depending on what your diagnosis is, this doctor may do a multitude of things, like splint therapy, trigger point injections, iontophoresis, ultrasound,transcutaneous electric nerve stimulation. They may refer you to other doctors such as a neurologist, ear nose and throat doctor, pain specialist, or oral surgeon. This doctor will come up with a treatment plan for you which can include any of the above. Usually they refer to this treatment plan by “Phase One” and “Phase Two.” Phase one is generally reducing pain, stopping any inflammatory or degenerative processes. This part of the plan is usually conservative. When your pain has subsided, and a correct diagnosis has been established, you move on to Phase Two, which can include braces, equilibration and total reconstruction including crown work and bridges. These treatments are non-reversible and invasive. Please keep in mind that this varies from doctor to doctor. At this point of treatment, many patients see a psychologist to help deal with the pain and associated effects of TMJ disorder on their life and their family. This is a very important aspect of treatment.

Please keep in mind that there is no board certification for “TMJ Specialists.” Any doctor can call themselves a specialist, whether they have had 5 hours of education on TMJ disorder or 5000. This makes it extremely important to do research on the particular physician you choose.

If the patient has headaches, burning pain, migraines or any neurological symptoms, they can be referred to a neurologist.

The Neurologist is a doctor who specializes in nerves and diseases of the brain and spinal column. Some patients with TMJ disorder see a neurologist for a headaches or facial nerve pain. A neurologist’s examination includes checking reflexes, strength, eye movement and nerve reaction. He might listen to your jaw joints with a stethoscope.
If you haven’t had an MRI by this point, the neurologist might order one.

The next installment of this three part article will cover Ear Nose and Throat doctors, pain management specialists, and oral surgeons.

How to Choose a TMJ Disorder Doctor

One of the most difficult parts of TMJ treatment or any kind of treatment is finding a good doctor or dentist.

One thing that is really important is having a primary care physician that you like, trust and who isn’t afraid to say “I don’t know, but I’ll find out”, or “I need to send you to a specialist”. The advantage of having a great primary care physician is that the great doctors know other great doctors. He or she can refer you to the top specialists in the area, and you can be confident that you are receiving the best care possible.

Research

This helps with most things, like cardiologists or allergists, but when it comes to interesting topics like TMJ disorder, many doctors might not know who to refer to, or not know any good physicians in the area. If your primary doctor does not know where to send you, do a search on Google for TMJ disorder specialists in the closest big city. Look at their websites, search their names to see if they have any published research (or any complaints). Refer to the latter part of this article for more in depth information on researching a doctor’s credentials.

Make a list of your priorities. Here is a sample list, but note that your list may be different depending on your particular needs.

1. What characteristics are important to you in a doctor?
2. Make a list of the doctors you find.
3. Check credentials.
4. Contact the doctor’s office.
5. Meet with the doctor.

1) Do you want a doctor who helps you make decisions and explains the choices you have in treatments?

Or would you like a doctor who makes the decisions for you without any discussion as to what the different choices were?

Or, would you like something in between?

This is important because if you will be doing a lot of research on your own, you need a doctor who is receptive to this type of participation. Conversely, if you don’t want to do research, you need to find a doctor who is comfortable with making decisions based on his professional experience.

Would you like a doctor who is involved in the latest research? Or part of a large university? Or a doctor who is more conservative and waits until cutting edge technology is more proven?

2) Resources for locating physicians:

American Dental Association: http://www.ada.org
American Academy of Craniofacial Pain: http://www.aacfp.org
American Board of Orofacial Pain: http://www.abop.net
American Society of Temporomandibular Joint Surgeons: http://www.astmjs.org

Credentials

3) The websites above will give you an idea of the doctor’s credentials, but you can also check on licensing and board certification through websites such as:
DocBoard
Amyrdh
Certifacts

Interviews

4) You might want to call the doctor’s offices that you are interested in and ask some general questions about their policies and rules. Some questions you might want to ask:
1. Office hours
2. Which hospitals the doctor has privileges and where procedures are done
3. After hour protocol and who covers for the physician if he or she is not available
4. How long is the wait to schedule an initial and/or routine appointment
5. How long is a typical wait in the office when scheduled for an appointment
6. What is the cancellation policy?
7. Protocol for refills and new prescriptions over the phone
8. Emergency information

Evaluate and Choose

After your phone interview with the staff and first appointment, ask yourself the following:

Did they:

1. Give me a chance to ask questions?
2. Really listen to my questions?
3. Answer in terms I understand?
4. Show respect for me?
5. Ask me questions?
6. Make me feel comfortable?
7. Address the health problems I came with?
8. Ask me my preferences about different kinds of treatments?
9. Spend enough time with me?
10. Take my concerns seriously?

Remember that a doctor’s staff is a reflection on him to some degree (especially if he is the only doctor in the office). If you can’t get to the doctor when you call in because the staff will not work with you, that may or may not be the doctor for you.

Also, you cannot put enough emphasis on your gut instinct of your initial impression of the doctor. If you feel something is not right, or find yourself making excuses for the doctor or his staff, trust in your instincts and move on to the next doctor on your list.

Hopefully this helps make the difficult task of choosing just the right doctor for you a little bit easier!

We have decided to go through with the total joint replacements without insurance coverage. I really hate that it has to come to this, but my condition is getting progressively worse, and I’m not sure how much longer I will be able to deal with it.

I will be walking you through the process, surgery, and recovery as it happens with pictures and detailed accounts of how I am feeling each day. Hopefully this will not only help others who will be having this surgery but will also increase the awareness among those who do not have TMJ disorder.

The website and message board are extremely important to me, and I will keep them up and running as long as my financial situation allows. I want to thank all of you for your continued support.

Merry Christmas, Happy Holidays, Happy Hanukkah, Selemat Hari Nata, Feliz Navidad, Buon Natale, Gezur Krislinjden, Frohe Weihnachten, Buon Natale, Joyeux Noel, Feliz Natal, Boas Festas!

Note: It is May 2008, and I am restoring posts from my joint replacement process so that information is available for those who seek it.  Please let me know if you have any questions.