Cymbalta joins another medication, Lyrica, as the only medications approved for this disease.  This is also the second approval for the use of Cymbalta for pain, the first being diabetic peripheral neuropathic pain.

With fibromyalgia, patients often find that a multi-disciplinary approach works best, and what works for one, may not work for all.  This approval is a huge step forward, because another choice in medication improves the chances that even more patients will find relief.

With approximately 5 million people diagnosed with fibromyalgia in the United States, this approval is definitely good news for many!

• Buy a bunch of pajamas and clothes that do not have to be put on over your head.
• Test out different types of protein powder before surgery so you can find the type you like.
• Buy a child sized toothbrush for when you can not open your mouth very wide.
• Stock up on frozen peas, corn, or other vegetables for moldable ice packs.
• Purchase a back wedge pillow to put in your bed to make sleeping easier.
• Purchase a pillow to support your neck, or roll up and tape a towel.
• Get your prescriptions filled before the surgery.
• Set up your bed area prior to surgery so that you are not scrambling after when you are in pain.
• Stock up on foods at the grocery store.  Pay attention to super foods, such as greek yogurt, blueberries, and pomegranate.
• Place a plastic lawn chair in the shower so that you don’t have to stand when you are exhausted.
• Consider having someone take care of your animals or children for the first couple days after surgery.
• Purchase a Thermophore heating pad for moist heat.
• If you will be wired, consider buying Zip n Squeeze, which make eating much easier.
• Consider getting a subscription to Netflix or another DVD rental service.  You may not feel like reading.
• A bed lounger with a back and arm rests is a welcomed comfort when stuck in bed all day.

Many of these products can be bought at the TMJ Friends store.  If you will be buying them anyway in preparation for surgery, consider supporting TMJ Friends so that we can continue to provide you with information and support!

If you have any questions, or would like to speak with a patient who has been through the same surgeries, please consider using our phone consultation service.

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!”

As always, if you would like to discuss this article or have questions, please visit our message board.

• Who Treats TMJ Disorder? General Dentists and TMJ Specialists
• Who Treats TMJ Disorder Part II -  Other Doctors That Treat TMJ Disorder
• Pain Management 101

I am also working on a list of other new articles:

• New Treatments & Research
• Splint Therapy
• Medications Used for TMJ Disorder
• Studies Covering Traditional TMJ Disorder Treatment (splints, etc)
• Insurance Coverage and TMJ Disorder: Tips and Info
• How to Communicate with your Doctors

If there is something you would like to read about that is not here or not already on the site, please let me know by commenting here or heading on over to the message board.

Research reported at the American Pain Society annual meeting shows that, contrary to widespread beliefs, less than 3 percent of patients with no history of drug abuse who are prescribed opioids for chronic pain will show signs of possible drug abuse or dependence.

Read the rest at Science Daily.

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.

He too felt it was TMJ and I had my first of 3 arthrocentesis surgeries last November. It was horrible. My pain continued and I could not close my mouth for a week. I had 2 more arthrocentesis’ done in February and April. I quit my job and dropped out of school. I was on constant pain meds and every muscle relaxer out there. Nothing helped. I had an MRI done which showed “nothing conclusive”. By now my opening ability was between 7 and 10 mm, I could eat strictly soft foods and was in pain around the clock. My primary care doctor started treating my like some type of drug seeking junkie.

Finally I had arthroplasty in June. My doctor found bone spurs which he filed down, recontoured my jaw line because it did not “look right” and sewed my disc in place. Recovery was painful.

I still continued to have constant pain but my opening ability increased to 32mm - WOW!

I had trigger point injections because I started having severe headaches and my muscles seemed immune to any type of muscle relaxer. A horrid grinding noise started in my jaw whenever I eat or move my jaw from side to side. I was in physical therapy following surgery which considerably helped my mobility but did nothing for pain reduction. My physical therapist asked me my goals for physical therapy and I told him I want to be able to eat a big mac and steak again. I suceeded in neither of these. The night bite guard that I had been wearing prior to surgery no longer fit right but I was told to keep wearing it. I continued to complain about the bite guard not fitting right and making my bite seem even more off. My OS finally told me to discontinue using it. WOW what a difference this has made. Two nights not wearing it and my bite almost felt normal again and my pain was reduced in half.

My OS and I have concluded that there is nothing else he can do for me and I am seeing a new doctor in October. He is a renowned specialist in TMJ. I am looking foward to meeting with him and hope he can help me. My new found pain reduction has changed my life and I almost feel normal again. The pain is controllable with medication when before taking vicoden was like taking an M&M. I hope I can return to school next January and start being the mother I have not been for almost a year. That is my story.

I hope to God this is just a “blip” in my life. But judging from reading tons of info on TMJ it sounds like it will be a life long struggle with good and bad periods.

I am updating my story, May 6, 2005. Unfortunately, this turned out not to be just a blip in my life. The new doctor turned out to be a worse nightmare than I could have imagined. He yanked me off of my meds and told me to take high doses of ibuprofen. That landed me in the hospital with dehydration from ripping my stomach to shreads and my bowels to water. Needless to say, I did not return to him. I was planning a trip to Boston to visit my family, my dad had surgery for tongue cancer and my grandfather had just passed away. I decided to see a doctor up there. I went to a doctor my dad had seen for his tongue cancer. He is a jaw reconstruction specialist. Before he would see me, he set up an MRI and a CAT scan and an appointment with a pain management specialist. When I got there, I had the scans and met with the pain management specialist. What a wonderful and caring doc! I had just about given up hope of ever finding a caring doc. After the scans I met with the surgeon to be evaluated for total joint replacement.

The surgeon did not feel I was a candidate for it - yet. I did have a chunk missing out of my bone and had scar tissue in the joint from previous surgeries. He said if he did surgery on me, he wanted it to be the last one and he wanted it to improve my pain and function and not make things worse.

So at this point, I have no future surgeries looming. I am being treated for pain only and had a new splint made to help avoid any further damage to the joint. It is not going to fix me. Nothing is going to fix me. I know that and the docs know that.

I have to travel to Boston once a month to see my doctor for now. But it worth the hassle.

Update, May 2008:  Amy contacted me to let me know that she has tapered off of all her opiate medications.  She says that she feels no worse than she did on them, and is really very pleased with the results.  She is working part-time as well as taking care of her kids, and feels very functional.  Congratulations, Amy!

If you have any questions for Amy, please either post a comment, or visit our questions page.