Millions of people wake up each day to pain and other symptoms from diseases and conditions that have not yet been diagnosed. Marianne Genetti is trying to do something about that. She founded "In Need Of Diagnosis," a non-profit organization committed to helping undiagnosed patients find appropriate doctors and resources.

Genetti plans to work with other nonprofit groups to create a database of symptoms. It's hard to believe that in this age of supercomputers, someone hasn't already done something like this. But in fact, there's nothing like it anywhere.

With all the billions of dollars spent on medical care and research each year, very little of it goes into diagnosing. And that's despite the fact the about forty percent of all illnesses are misdiagnosed. According to an article in the Journal of the American Medical Association, fatal illnesses are misdiagnosed in 20 out of every 100 cases.

In May of 2008, the National Institutes of Health launched an Undiagnosed Diseases Program to study some of the most difficult undiagnosed cases. As it only accepts 50 to 100 patients per year, it does little to address the crying need for proper diagnosis for millions of people in the United States alone. Marianne Genetti hopes her organization will help fill the gap by collecting information that may advance the medical communities knowledge.

Genetti was motivated to start In Need Of Diagnosis after her own struggle with a serious and undiagnosed lung problem. She recognized the need for a national database of symptoms, as well as the need to encourage undiagnosed patients to be more aggressive in asking their doctors for more tests, information and input. In Need Of Diagnosis is a young organization. It is in need of volunteers and donations. If you are in need of help and support in finding a proper diagnosis for chronic pain or any other health-related issue, I encourage you to visit In Need Of Diagnosis at their web site, http://www.inod.org

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

You're not alone. Millions of people need help. And millions are being denied help because they have the misfortune to be without adequate insurance or private funds. And for that sin, they are made to suffer.

I know what it's like to be disabled and denied adequate care. In 1989, I was the innocent victim in an auto accident caused by a driver that sped away. As we waited for the ambulance, my husband stroked my hand and assured me, "Don't worry about anything. We've got good insurance."

Months later, having overcome two incompetent doctors who misdiagnosed and mis-treated me, I finally found a doctor that sent me for the right tests, made the right diagnosis and prescribed the right therapy. Each day, for four weeks, as I entered the therapy clinic, that doctor would ask me how I was doing and encourage me. I felt he cared. And after being abused by two careless doctors, that made a world of difference to me.

But on the fifth week, when I entered the clinic, the doctor, seeing me, turned abruptly away. I called after him, but he went into his office and shut the door.

When I approached the desk to sign in, a clerk came out and told me she needed to speak to me privately. In her office, I was told that my health insurance provider had declared bankruptcy. If I wanted further care, I had to make a cash deposit of fifty thousand dollars. I was stunned. She was emotionless. It was made perfectly clear to me that my relationship at that clinic was over.

Back home, I called the number I had for my insurance company. The woman that answered that number told me XYZ Insurance Company was no longer in business. A brand new company, XYZ-Z. was now enthroned. At the same address. Using the same employees. And the same phone number. In fact, everything was the same except one thing–I no longer had health insurance. And because I didn't have the cash, I no longer had medical care.

Keep in mind, please, that I had done everything society told me to do. I worked hard. I took care of my health. I paid through the nose for good health care, not a bare bones policy, but the high-priced spread that covered everything. But when I finally needed that policy, they pulled the rug out form under me, even while they went on selling insurance from the same building using the same employees.

That is why the United States needs to provide national health care–the same level of national health care that every citizen of every other industrialized nation in the world receives. And I'm not the only one that thinks so. I've spoken with many health care professionals who agonize over their inability to help good people heal and return to a quality of life.

Over at Salon, you can read an article by Ford Vox, an M.D. who works as part of a team that, as he describes it, tries "to put lives back together after disabling injury and disease." In his article, Dr. Vox describes the horror of having the resources of healing at hand, but not being able to apply them to people whose insurance has lapsed or been used up, or to people unfortunate enough to live in states with no commitment to adequate health care.

Millions of people on both sides of the table, pain patients and health care professionals alike, are clamoring for health care reform, for a system that, as Dr. Vox says, "does not trample on basic human rights." Add your voice to the clamor. Let your elected officials know that health care is a top priority issue for you, and that you will not sit back quietly as they once again let insurance companies thrive while we suffer.

Here is where you can contact your representatives: HOUSE http://www.house.gov/writerep/ SENATE http://www.senate.gov/ WHITE HOUSE  http://www.whitehouse.gov/contact/ And while you're at it, use the comment box to add your voice to this blog. The more you speak up, the more likely you'll be heard!

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

A new book by Professor/Dr. Rothbart says that a recently discovered foot structure which can be effectively treated without drugs or surgery has been proven to be the source of a great deal of chronic muscle and joint pain.

On first reading the book, “Forever Free From Chronic Pain: the pain sufferers guide to getting your life back,” I felt this explanation was fantastical, almost unbelievable. Could a slightly twisted foot really be the reason so many millions of people live in unrelenting pain?

But on a second reading, I began to develop a better understanding of the source of much muscle and joint pain as well as the way to resolve it.

Professor/Dr. Rothbart is a podiatrist and surgeon who spent the better part of his career in clinical practice and research. But in 1991, an auto accident left him with neck and shoulder pain that did not respond to traditional medical therapy.

He sought out alternative therapies and tried countless practitioners, but when continuing pain threatened his career, Professor/Dr. Rothbart finally decided he would have to help himself.

That’s when Rothbart began his research into chronic musculoskeletal pain, or pain of the muscles and joints. His work lead him to the discovery of a very common source of musculoskeletal pain that begins in the foot, but is frequently the source of pain in the knees, hips, back and all the way up to the jaw.

What Prof/Dr Rothbart discovered was an embryological foot structure that forms in about the seventh week of development. That is to say, the foot of the growing fetus does not develop normally.  This embryological foot structure results in lifelong poor posture and that forced poor posture, the doctor’s research proved, is frequently the source of chronic musculoskeletal pain.

Furthermore, the doctor discovered the condition is inherited. Typically, if you have chronic pain and this foot structure is the source, it’s likely one of your parents will have a history of chronic pain. You may also pass it on to your children.

The embryological foot structure he discovered now bears the doctor’s name: Rothbarts Foot.

The therapy Professor/Dr. Rothbart developed involves neither drugs nor surgery. It is, he says, geared toward normalizing the foot, which then automates the correction of poor posture and allows the body to heal without drugs or surgery.

The therapy is done in a unique way. It begins with specialized shoe inserts. As the foot structure is corrected, the foot sends new signals to the brain, literally reprogramming the central nervous system to correct the posture. As the posture automatically corrects, pain ceases. “This is not about managing pain,” says Professor/Dr. Rothbart. “It's about eliminating chronic muscle and joint paint. My therapy reprograms the brain to adopt perfect posture, thus removing the source of pain.”

If, after the initial consultation, the doctor determines you are a candidate for this therapy, he will help you plan a course of action based on your individual case. Regarding the time the treatment takes, Professor/Dr. Rothbart says it varies, but he compares it to the time it takes to correct the teeth with braces.

“It takes time, “ he says. “Typically, the therapy takes from 6 to 18 months. It involves consulting with me or being seen by me 5 or 6 times. Most of my patients find their pain reduced 30, 40, 50% in a week or two.”

“I don’t work miracles,” Professor/Dr. Rothbart says. "But what I can do, when people have this embryological foot structure, is effectively treat it and these people dramatically improve, even if they have concurrent problems.”

Professor/Dr. Rothbart explains that many who have been diagnosed with diseases ranging from fibromyalgia to arthritis and even muscular sclerosis also have Rothbarts Foot Syndrome. “When I normalize the signals being sent to the brain by this embryological foot structure,, the pain gets much better,” the doctor says. “ I haven't resolved the arthritis or lupus or whatever, but the patient feels much better because I have resolved one major source of their pain.

The doctor says that for the most part, traditional medicine focuses on pain management, not resolution of pain.

“One of the reasons I left surgery, ´ Professor/Dr. Rothbart says, “ is because I was so unhappy with the results. I found that many of the patients I gave joint replacements to returned years later with the same pain. “But pain is not the problem,” he says. “Pain is a symptom of the problem. I was treating the symptom. What I wanted was resolution of the cause.”

And the cause, discovered over 40 years of research, is frequently poor posture caused by a twisted foot. If this explanation sounds too simplistic to you, if you don’t believe poor posture could be causing your back or jaw pain, consider this: prior to 1945, correct posture was considered critical to good health. A good deal of medical care involved correcting the posture so that the body could heal itself naturally.

But in 1945, penicillin was discovered, and the entire focus of medical care tuned toward pharmacological treatment. Doctors began to believe, and the public was told, that science could develop “magic bullets’ to cure most anything. There no longer seemed any need for people to be proactive in building good health. And all that information about good posture as the source of good health was lost.

Today, the millions of people suffering from chronic pain stand in testimony to the truth: there is no magic bullet from chronic pain. And Professor/Dr. Rothbart’s research has brought him back full circle to where traditional medicine once stood—pointing toward good posture as the wellspring of good health.

Reading Dr. Rothbart’s new book, “Forever Free From Chronic Pain: the pain sufferers guide to getting your life back,” gave me new insight into why so many people are in chronic pain, and why the traditional medical community is so ill-prepared to treat it. It also gave me hope that for many people, help is finally at hand…or should I say foot?

If you want to explore Dr. Rothbart’s work and see if you might be a candidate for his therapy, you’ll find a vast amount of resources online. Begin with his book web site at Forever Free From Chronic Pain

There you’ll find a vast treasury of information ranging from patient stories to book reviews to interviews with the doctor. Here you can download a free chapter from his book and register for his free newsletter.

At his personal web site, http://rothbartsite.com/ you’ll find more resources, including a blog featuring some of the latest medical research Dr. Rothbart is involved in.

After exploring these resources, if you feel you might be a candidate for the therapy, you can explore the possibility of a long-distance consultation with Dr. Rothbart. In much that same way as many cardiologists now do long-distance consultation, Dr. Rothbart will speak to you by phone, determine if you are a candidate for this therapy and whether or not any tests need to be done. The cost of a long-distance consultation with the doctor, who currently resides in Italy, is 100 Euros, about $125 U.S. Dollars.

If, after the initial consultation, the doctor determines you are a candidate for this therapy, he will help you plan a course of action based on your individual case. Regarding the time the treatment takes, Professor/Dr. Rothbart says it varied for everyone, but he compares it to the time it takes to correct the teeth with braces.

“It takes time, “ he says. “But typically, the therapy takes between 6 and 12 months. It involves consulting with me or being seen by me 5 or 6 times. Most of my patients find their pain reduced 30, 40, 50% in a week or two.”

If you have been going from doctor to doctor, and yet find no relief from your chronic pain, I urge you to look into Professor/Dr. Rothbart's work for yourself.

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

Fast-forward more than 20 years. It's 2007. Blancarte, now 48, is bitten by a brown recluse spider.  Knowing the spider's bite is deadly poisonous, Blancarte's family rushes him to the hospital where he spends 8 months in physical therapy.

During one of the therapy sessions, a nurse notices a muscle spasm in Blancarte's leg. She notifies Blancarte's doctor, who orders tests that show that the once-dead nerves in Blancarte's legs are now reacting to stimulus.

Five days after the tests, Blancarte is walking. Doctors reportedly say they are mystified.

I've worked with paralyzed men in pain support groups. For the first few years of being paralyzed, all of them expect something– some doctor, some operation, some miracle, something– will happen to let them walk again. After 20 years of being paralyzed, no one expects that. Not the person that is paralyzed. Not their families, or doctors or therapists or ministers. No one.

And yet, for unknown reasons, the dead nerves in David Blancartes legs suddenly regenerated.  And he walked.

Every week I hear from people who are struggling with depression because they have been diagnosed with rheumatoid arthritis or lupus or some other painful disease. And they have been told there is no hope for a cure. Every week I hear from people that are still suffering terrible pain even years after a back injury. They no longer hold out hope for a cure. These people often say the same thing. " All I can see is myself getting older and being in even more pain. And I get so depressed."

I want those people, and you, to know about David Blancarte. He is living proof that what we can only call miracles can and do happen. He is proof that no one, no matter how many degrees they have, no matter what they've experienced, no matter what they think they know, can predict the future.

David Blancarte is proof that no one has the right to assume that the end of his or her story has already been written. He is proof that there is always reason to hope, and even to expect that life will bring us the most amazing, unpredictable and unexplainable circumstances, often when we least expect it. David Blancarte is the reason you should push through even the bad days with a smile on your face and bright plans for the future.

### Bonnie Boots publishes Pain Health News to provide information, motivation and understanding to people living with chronic pain. To stay in touch with her, please use the subscribe form in the upper right corner.

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Richardson, wife of Liam Neeson and daughter of Vanessa Redgrave, fell during a lesson on a beginner's ski slope in Quebec. She hit her head. After falling, she got up, walked around, talked to people and declined treatment.

I'm sure everyone, including Richardson, thought she was O.K. They all probably said, "She just fell." But two days later, she was dead from a blood clot that developed between the brain and the skull.

I took a fall myself last year and hit my head. I was carrying groceries into the house when a paper bag began to rip. Grabbing to support it, I lost my balance and fell flat on my face on the concrete sidewalk. I was stunned and dazed. But by the time my husband came out of the garage and around to the front door, I was standing.

I told him I'd fallen. He asked if I was O.K. "Yeah," I said. "I just hit my head." And we went inside.

Two weeks later, I realized I might have had a concussion from that fall. Immediately after I'd fallen, I'd had a headache. My vision had been slightly blurred. And only in retrospect was I able to assess how fuzzy my thinking had been all that week. So fuzzy that I hadn't even thought to go to the doctor.

I was very lucky and I knew it. Many years ago, while a student, I worked part time in a hospital where I'd seen a young man die from a situation similar to Natasha Richardson's. That day, a doctor told me sadly that too many people think a person that gets up and walks around after a fall is O.K.

Every blow to the head, no matter how seemingly insignificant, and especially in children, he told me, must be checked out by a doctor to be absolutely certain there is no internal bleeding. "Never assume "just" a bump on the head," that doctor told me. "That word, "just." kills people."

I think the word "just" killed Natasha Richardson. That word "just" kills a lot of people. When I was injured in a car accident and wound up as a chronic pain patient, I heard that word, "just", over and over.

In the emergency room, a doctor told me, "You're lucky. It's just a bump on the head. You could have been killed."

Later, in my family doctor's office, I heard, "You're lucky it's just soft tissue damage. You could have broken a lot of bones."

At a specialists, I heard, "You can't possibly be in that much pain. It's just pulled muscles."

Time and time again, my complaints and symptoms were declared insignificant with one wave of the word "just."

In my case, it wasn't "just" a bump on the head. I had a blood clot on my brain that could have killed me. It wasn't "just" soft tissue damage and pulled muscles. I had sprained hands, ruptured disks, torn ligaments and a host of other injuries. Because they went untreated, I spent years in disabling pain.

There are so many dangers for pain patients, like risks of drug addiction and overdose, risks associated with hospitals and surgery, risk of misdiagnosis, but perhaps the highest potential for risk comes from one simple little word. That word is "just," Don't say that word. Don't let others say it to you. Check things out. Get second opinions. And remember that just being able to walk and talk isn't necessarily the measure of perfect health.

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Bonnie Boots publishes Pain Health News to provide information, motivation and understanding to people living with chronic pain. To keep in touch with her, use the subscribe form in the upper right corner.

Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong Do I Need to See the Doctor? A Guide for Treating Common Minor Ailments at Home for All Ages

As reported in The Journal of Pain published by the American Pain Society, researchers in a Chicago-based program set out to determine how effective mind/body self-care techniques were in helping adults cope with chronic pain.

The study documented the experiences of seventy-eight people age 55 and older as they used the internet to access a variety of online pain management tools. Researches assessed changes in pain intensity as well as the subject’s ability to better manage their pain.

The subjects in the study were divided into intervention and comparison groups. The intervention group used online tools at least once a week.

A website the intervention group was given access to guided visitors through such pain coping techniques as deep breathing exercises, relaxation techniques, journaling about their feelings and experiences, creative visualization exercises and positive thinking exercises.

Online instructional materials such as videos, worksheets and illustrations guided the subjects through the various modules in the online program and encouraged them to participate in developing coping strategies.

At the end of the study, researches evaluated the experiences of the intervention group and the comparison group. They concluded that the intervention group using online tools showed significant improvements in pain intensity as well as the level of interference in daily activities the subjects attributed to pain.

Researchers also concluded that the subjects using online support tools showed improved confidence in their ability to use self-care techniques for managing their own pain.

The researchers concluded that online intervention offers a viable means of empowering older adults with chronic pain to learn self-care techniques and integrate those techniques into their daily lives.

From my own experience in organizing self-help support groups, I know that the average person suffering chronic pain gets very little help in learning to manage it. My hope is that this study will lead health care providers and insurance companies to develop online programs teaching pain management techniques and provide easy and affordable access to them.

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

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Over the last 2 days, with much of North America caught in the icy grip of a major winter storm, even Florida has felt the brunt of those cold northern winds. Our temperatures have dropped into the 40’s. True, that’s not much by Northern standards, but for those of us who live in the Sunshine State, it feels like a new Ice Age has descended. And my bones don’t like it one bit.

My whole body aches. My fingers have lost their dexterity and all I want to do is curl up in a ball and sleep until it’s over. But that’s something I rarely let myself do. For years, that was my main pain strategy—take a pill and sleep as much as possible, hoping that when I woke it would all be better. But it didn’t get better. Not until I stopped running from pain and confronted it head on.

In order to move past chronic pain, I had to adopt a whole new attitude, one that wouldn’t hide under the covers at every twitch of a nerve. So yesterday, for instance, while cold was making my bones creak, I sat right here at the keyboard working. I wasn’t thinking very clearly and I certainly wasn’t typing very fast, but I was working.

Between bouts of work, I took breaks for hot showers and sit-downs in my massage chair. I listened to my hypnosis tapes. I did my EFT tapping. I did gentle exercise. And I kept my inner talk positive. “Pain can’t stop me,” I told myself. “ Today’s not the best day I’ve had, but it’s far from the worst!”

All that’s in far contrast to what I did and thought when pain was my daily companion. I used to drug myself, curl up in a ball and cry, “I can’t take it. I can’t stand this. I can’t do this.”

Everyone that suffers from chronic pain know this—chronic pain robs you of your self-esteem. You doubt your sanity. You doubt your decisions. You doubt your ability to cope.

 Pain and negative inner talk left me feeling both powerless and hopeless. That’s a lethal combination. To save myself from both, I used hypnosis tapes and CD’s to transform my thinking.. I learned to keep my inner talk positive. And I learned that my attitude was the most powerful pain management tool I have.

One of the programs I worked with that made a real difference in my life is “Core Inner Strength,” a 2-CD set by Dr. Shirley McNeal. At a time when I was feeling worthless, hopeless and weak. Dr. McNeal’s program turned my attitude around. It helped me find the self-confidence I needed to stop cowering from chronic pain. That’s why, yesterday, I didn’t cower in bed. I got up and took action, because I know, beyond any shadow of doubt, I have the inner-strength to do anything I set my mind to.

I regard “Core Inner Strength” as one of the key skills every pain patient needs to learn. You can read all about the "Core Inner Strength" program here: http://www.hypnosisnetwork.com/hypnosis/self_esteem.php It comes with my highest recommendation!

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

But recently, some states have been taking steps to limit the sort of largesse that drug companies can pass to physicians. In Minnesota, for instance, the state ruled that pharmaceutical salespeople could not give more than $50 in free food to doctors per year. One pharmaceutical sales rep I know in here in Florida sat down and cried buckets when she saw laws changing. “There goes my career!” she cried. “Without freebies, I won’t be able to get my foot in the door at most medical offices.”

Her fears, it must be admitted, were justified. A study has shown that doctors in Minnesota are rejecting pharmaceutical sales visits more than anywhere in the country.

I didn't have to be psychic to  see that pharmaceutical companies would ferret out new ways of making sure their pill is the drug of choice when a doctor sits down to write a prescription. And today, I got my first glimpse of one of those new ways. I just saw a television ad for the Orencia Promise Program from Bristol-Myers Squibb. Orencia is a new drug for people suffering from moderate to severe Rheumatoid Arthritis.

In a nutshell, the Orencia Promise Program is a co-pay program for new Orencia patients with private insurance. The program will pay the full co-pay for Orencia for the first 6 months of therapy. In addition, if you're not satisfied after 6 months, the program will pay your first co-pay of another RA medicine, up to $500 (Some restrictions and exclusions may apply. If you're interested in the Orencia Promise Program click their name to visit their web site.)

On the one hand, I’m pleased to see pharmaceutical companies throwing their money at patients for a change. While they’re at it, how about inviting us to some of those fine restaurants and weekend trips to Disney World for “educational seminars”? I could use a new laptop, too!

On the other hand,  I’m worried that bribing —err, “rewarding” patients could turn out to be an even bigger threat than the old method of rewarding doctors. With the world economy swirling down the toilet,  how many RA patients will be tempted to change therapies just to get their prescriptions—any  prescriptions—free for 6 months?

Doctors are influenced by their patient’s requests.  “Naturally I want patients to be involved in their own health care,” one doctor told me. “If they express interest in a drug with potential benefit and I see no contra-indications, I’m inclined to let them have a trial of it.”

But this tactic of throwing money at people to get your drugs in play is the same old double-edged sword. It’s only that this time, the sword is being passed to the patient. As a pain patient, what’s your take on this issue? Use the comment box below to state your opinion. Meanwhile, I'll be on the phone to Bristol-Myers Squibb to see if that link I provided to their website  is worth a new laptop to them.

### Bonnie Boots recovered from totally disabling chronic pain, but still has occasional days when she feels like hell. That's why she publishes Pain Health News, providing information, motivation and conversation to people challenged by chronic pain.

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