TMJ Friends

I thought before I launched into writing articles and fully running the message board, I should explain where I have been for the past year, and what brought me back.

For those of you who don’t know me, or my story, I had bilateral TMJ replacements about two years ago.  About one year after the surgery, I decided to move back to my favorite city in the world: San Francicso.  When I moved, I was under the impression that I might be able to put some of TMJ disorder behind me.  I had closed the TMJ Friends message board because it was just too much to handle for one person, and started out west.

After the initial excitement of a new beginning wore off, I found myself isolated.  I also realized how much it helped me to set aside my issues and help other people.  I never knew how much I would miss the support and community that was established with TMJ Friends.

Have you ever said to someone, “I have a really bad headache,” and their response was to tell you about how their headache was so much worse.. and then the conversation ends there?   You might get a response like that on a support board, but it doesn’t end there.  It always opens a dialog and prompts feedback from other people.  I didn’t have many people to get feedback from, and certainly not anyone who really understood.  Not that I blame them - how could they understand when they didn’t really know me?

San Francisco was a learning and growing experience.  No one likes pain - we all want to try and change our situations and the circumstances that caused them.  However, a new location doesn’t change anything!  All you can change is the way you feel or deal with your circumstances.  These things are much easier to handle when you are surrounded by people who love and support you.

I think Dorothy from Wizard of Oz said it best: “If I ever go looking for my heart’s desire again, I won’t look any further than my own back yard.  Because if it isn’t there, I never really lost it to begin with!”

One of the most common questions I am asked regarding my joint replacements is if I would do it again. That is a hard question, because I feel as though I had very little choice. My joints were fused, and I could either live with extremely limited function and a high pain level, or I could take the chance on the total joint replacements and gain both pain relief and function, or at least one of the two.
They say hindsight is 20/20. Considering the small gain in function and limited pain relief, I would NOT do it again.

I don’t think the small things I gained were worth the pain, effort, travel, and money.

I am also very limited in what can be done now that I have the joint replacements. I am very young, and because of this will end up having many more joint replacements.
Very few doctors know how to deal with the chronic pain and limited function that I have as a result of over 10 TMJ surgeries and nerve damage.

If and/or when the joint replacements fail, I have no options other than new joint replacements. If I become allergic to the materials in the joints, I have no options.

I do believe TMJ total joint replacements have their place in TMJ surgery. Some patients are good candidates for this procedure and do very well for years. There are patients now that have had joint replacements for over 15 years and are doing very well. However, these patients are few and far between.

The lesson here is to make sure you understand that total joint replacements often do NOT relieve pain.  If the major reason you are having the joint replacements is pain, you might be better off in long term pain management.

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.

Surrounded - Photo originally uploaded by Harry_S

At the time of diagnosis, often times a patient becomes very emotional, or very detached (of course there are degrees in between). Many people tend to take their diagnosis at face value, and place their treatment in the hands of a doctor. They are often too emotional to take charge.

The detached will start forming a game plan. They research, ask questions, and become an active participant in their treatment. They also tend to unconsciously put emotions on the back burner. They are so incredibly busy “staging the battle” that the thought of dealing with emotions doesn’t even cross their mind.

As part of “staging the battle”, many patients also rally the troops. Patients find themselves surrounded with family and friends. All of them relaying stories about their great aunt, Uncle Joe, and their cousin’s boyfriend who went through the same thing and were just fine. Sometimes, the opposite is true, and people will shy away because they do not know what to say or how to act. This is a very precarious time, because the way you respond to your family and friends is the way they will respond back to you when you need them the most.

It seems that in the diagnosis stage of an illness, there is a lot of confusion. It’s a little like putting together a puzzle. A puzzle that is written in medical terms, and the lay person does not understand it. Everyone is hearing terminology that they have never heard before, and nothing seems to make sense. Once those pieces of the puzzle start fitting together, there comes a sense of acceptance.

The treatment phase of an illness is the busiest time. This is when the patient’s support team becomes invaluable. The patient has doctor visits, possible surgeries, children to take care of, meals to cook, and medications to take that may not allow them to do these things. New issues arise such as how much to tell the family. The consequences of not telling them the whole truth may create new problems later on. Patients may feel the need to force themselves to do too much, which not only delays the healing process, but could also give off the impression that they are doing much better than they actually are.

Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them. As a result, the patient might find themselves telling people less and less of what is happening, causing the people around them to back away.
For some, treatment may go on for years, and dealing with it is a delicate balancing act.

After the so called “cure,” the “troops” start backing away, going back to their regular lives. All the emotions the patient unconsciously left on the back burner during treatment are now coming out ten fold. This is the point where the patient discovers the toll that the illness has taken on their life and their family.

Before and during a treatment, the patient has so many people by their side - doctors, family, friends.. but afterwards, they can be left feeling isolated and alone. Add that to the fact that the so called “cure” might not be, and you have a recipe for major depression. Life does not necessarily resume. There may still be medical issues that require treatment, and there is always the possibility of failure.

Dealing with an illness of any kind requires a multi-faceted approach. The patient must be treated as a whole including mind, body, and spirit.

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.

Either the swelling has gone down a little bit, or I am getting used to my new big face. I think it’s the latter.
The pain on a scale of one to ten is a tolerable six. I still need pain medication but I don’t feel like crying. It’s hard to distinguish at this point what is surgical pain and what is residual pain left over from TMJ disorder.
This morning when I got up and spoke to my Mom, the strangest thing happened. After I said a couple of words to her, I found myself repeating what I said over and over and making different noises. My new joints vibrate when I talk, but only with certain words. I think I’ll either get used to it, or it will disappear once the swelling goes down. Will I be hearing radio stations next? And I hope if I do it’s not Mexican Polka music!
Most people ask me if the joints feel “weird.” I honestly have to say (besides the vibrating), that they don’t feel any different than my last ones did. I think this both speaks for the amazing construction of them and the incredibly talented surgeon who implanted them.
I still have questions about how they’ll feel as time goes on, like in weather changes - will cold effect me? Will I feel storms coming? I’ll just have to wait and see.

I think that the general rule of thumb is that after any major trauma to your body (and surgery definitely is a trauma), it will take about a year before you feel like it never happened. That isn’t to say I am going to just lay low for a year and feel sorry for myself. However, I do feel that having two major surgeries in such a short period of time has had a profound effect on me even though I may not know it at this moment. I also feel more beat up and more fragile this time around. Perhaps part of that is the let down of having it all over with, too. Friends and family tend to think that the surgery is over with now… I’m okay, and they get on with their lives.. when in fact, this is the period when I probably need the most emotional support. I’m glad to have all of you guys here supporting me, and I know I can count on you when I need you.

By the way, today I had a happy meal and some carrot cake. My tongue was very happy.

A Mother’s Perspective
written by Candy, my Mom

As the parent of a child with TMJ disorder, the first thing I want to say is that I am not perfect. I get impatient, and on occasion exhibit and those behaviors that I condemn in others who don’t live with this situation on a daily basis. I think this is mostly due to frustration, and the inability to stop the cycle that has turned our lives upside down. Having said that, I must also add that I am the eternal optimist. Frustrations are short lived, and replaced with hope. Hope that the next procedure will be the last, hope that my child will once again leave the nest and be whole again.
TMJ disorder has been an all encompassing disease. It has affected every aspect of our lives, but we have learned to cope with the limits it presents.
We have learned not to make plans, but take the days as they come. I will try to run down the list of adjustments we have made, and the coping mechanisms I use to make our lives easier.

*Food - Our refrigerator and cupboards are filled with soft foods such as puddings, potatoes for baking, soups, oatmeal, cereal, fresh fruit for smoothies, and liquid diet supplements. Stacy uses the rubber coated baby spoons.

*Sleep - This has been an area that we have not been able to control. Stacy pretty much sleeps when she can. We have found that using one of those neck pillows with the tiny pellets in it helps relieve pressure because she puts her ear in the hole. Sleep medications have not been able to induce the quality and duration of sleep that she needs because she wakes up as soon as they wear off. Her 8 hours of sleep is usually from cat naps during the day, and a 4 to 5 hour stretch at night. It is difficult for me to adjust to this because out of habit, I find it to be my job as a Mother to see that my children are sleeping at night. My children have made a joke out of me telling them to “go to bed,” something I continue to do even though two of them live hours away.

*Shopping and Lunch - Now you might think I am crazy, but this is a natural part of the Mother Daughter bonding experience. Stacy and I used to shop like it was a job. Now we go to Target, fill a cart with all the things we want (not need), then Stacy tires out, and we abandon the cart, and go home. Thereby fulfilling the urge to shop, without having the expense, and we avoid standing in line. On a good day, we will make minor purchases, and skip going to lunch because a nap is in order.

*TMJ Friends - Stacy spends hours each day on the internet, researching, answering questions, talking on the phone, and writing articles. During my periods of frustration, I get upset that she can do all those things and not participate more in the running of the household. It is difficult for me to hold back my feelings at times, and I become short tempered. However, I do try to understand that it is important for her to feel that she is doing something to help others and take the focus of herself. To her credit, Stacy has given 110% to the organization and has more determination than anyone I know. But dang it, Stacy, can’t you just put your dishes in the dishwasher? (I feel better now…LOL)

*Relationships with family - This is a pretty sticky topic. Stacy has been living with her stepfather Rich and myself on and off for the past 2 years while she undergoes medical treatment. It has been a difficult situation at times. The rest of the family thinks she should be working and living on her own. Sometimes I think if she had another disease, or a growth that they could see, they would be more sympathetic. We have several concerns about their attitudes, and how they will treat her when she has the joint replacements. We live with the fear that they might not be successful. Rich, her Stepfather, has been wonderful and has accepted the situation with grace. Stacy’s younger brother has a hard time understanding and sometimes seems resentful of the attention she gets. I think that his reaction is pretty normal, and I talk to him often about his feelings. Does it help? I don’t know! The relationship Stacy has with her father is a whole article of it’s own, and I won’t even go there except to say that when it comes down to it, he is as supportive as he knows how to be.

*Money - Do you have an hour? Her father contributes when pushed into it, and extracts a price for every penny he gives. He does pay for some of her medical expenses, and is in a financial position to pay all of them.

*Surgeries - This subject is a mothers worst nightmare. Stacy has been through so many, and each one presents a new set of issues that we thought we had prepared for. Pain management is the worst, we fight with nurses, threaten to leave AMA, and still have not been able to conquer this problem. Somehow communication between anesthesiologists, surgeons, and nurses is lost when the surgery is over and Stacy is left in excruciating pain. We go into each surgery with humor.. writing notes on Stacy’s body, reminding the surgeon to wash his hands, noting which side is the WRONG side… you get the picture. We always remember to bring her blankie for recovery. Inevitably, she comes out of surgery in pain and it is never controlled. When she spends the night, I stay with her. I always prepare her room for homecoming.. fill it with her favorite flowers, scented candles, her favorite beech sheets (ask Stacy about these). Of course her laptop is in place next to the bed so she can hop on the board and give you the latest update.

The pain of seeing your child go through surgery does not ease up after the second, third, of sixth time. I have learned to do my crying at night when I am alone, some may view my reactions as being unemotional, but the emotions are there, just under the surface. I have learned to control them before they control me.

In closing, I would like to say that like you, I don’t have the answers. I can only share my side of the story in hopes that those of you reading it will get a better understanding of what the view is like from this side of TMJ disorder.
The only sage advice I can give is to keep your sense of humor, and “GO TO BED!”