What Does Being an E-Health Advocate
Mean to Me?

by Julie Ryan

Blue E-Health Button on White Computer Keyboard

E-health is a big topic right now, whether we realize it or not. New laws are requiring that doctors put records online, which should mean that we, as patients, have easier access to our own health information, but it may not. The move to e-health is a slow one and has only just begun. As a patient, being an e-health advocate is important to me, but it’s about a lot more than just my medical records. Being an e-health advocate means that I am attempting to use the internet to make a difference not only in my own health, but for others as well. Specifically, being an e-health advocate means:
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Syndromic Success

By David L. Katz, MD; Chief Medical Officer of the Community Pain Center

 

There are few things more vexing to patient and doctor alike than dealing with a syndrome—a condition that has a recognizable cluster of characteristic symptoms (what the patient feels) and/or signs (what the doctor finds on examination or testing)—but no known cause, no confirmatory test, and often, no certain approach to treatment. As an example, acute infection with Borrelia burgdorferi is Lyme disease; the symptoms that sometimes linger for years after a bout of Lyme disease is treated constitute a syndrome.

Migräne Anfall Cluster Kopfschmerzen

The challenge of living with a syndrome confronts millions of Americans. Roughly 1% to 2% of the US population, or some 4 million people, have fibromyalgia. Chronic fatigue syndrome affects approximately 800,000. As many as 50,000,000 of us have irritable bowel syndrome. Nearly 40,000,000 women have premenstrual syndrome. Interstitial cystitis plagues some 700,000 women, and nearly 28 million adults in the US have a migraine headache syndrome.

If you are a member of the enormous population that suffers from one or more syndromes, you can get good medical care. But you have to know how.

Syndromes often must be diagnosed on the basis of symptoms and signs alone, in the
absence of any characteristic
laboratory test findings.

There are several important differences between syndromes and diseases that have implications for the care provided and received. Because a disease has a cause that is known to one degree or another, it is often verifiable through diagnostic testing, such as blood tests or x-rays. Syndromes often must be diagnosed on the basis of symptoms and signs alone, in the absence of any characteristic laboratory test findings. They are often called “diagnoses of exclusion,” meaning a syndrome is diagnosed when testing rules out everything else!
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Patient Power: 3 Strategies to Improve
Provider Relationships

By Joy H. Selak, PhD

 

  •  Hire the Right Doctors, Fire the Wrong Ones
  •  Become a Prepared, Professional Patient
  •  Join a ‘Good Doctor Club’

 

Female doctor and patient

…over the years, I’ve enjoyed a consistently rising trajectory toward accessing
more effective and supportive care,
more quickly.

As the author of You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, I’ve been fortunate to work closely with an outstanding physician, my co-author, Dr. Steven Overman. I’ve also had the opportunity to speak to many illness support groups about the challenges pain patients face in building an effective, supportive relationship like this with their physicians. I had been living in the illness world for many years before I found Dr. Overman, and have worked with many other treating physicians in other cities before and since. I’ve had both good and bad experiences in building these relationships, but over the years, I’ve enjoyed a consistently rising trajectory toward accessing more effective and supportive care, more quickly. I hope that by sharing just a few of my adopted strategies, I can offer patients a head start on their own journey.
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Hooked Up for a Good Night’s Sleep

 

Many people with fibromyalgia also have irregular sleep patterns or sleep disorders. Whether it’s insomnia or idiopathic hypersomnia (trouble staying awake), the combination of pain and sleep disturbance is a vicious cycle: the pain makes sleep more difficult and sleep deprivation causes pain.
Pain - Sleep Disturbance Cycle

Addressing one’s sleep disturbance
is essential to improving
pain symptoms and overall health.

It is important to identify the cause, triggers, and type of the sleep disturbances, and then find a sleep professional who can help in treating the problem.

One fibromyalgia patient, Margaret, had extreme tiredness and constant fatigue throughout the day.

“I’m a teacher, and one summer I really noticed there was something wrong. I was stress-free and relaxed, not having to work. I was getting eight, nine, ten hours of sleep a night, and had a consistent sleep pattern; but I was always falling asleep during the day, sometimes without even realizing it! Normally I can read for hours, but I couldn’t even stay awake to read. That made me recognize something still wasn’t right,” she reported.
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Interstitial Cystitis and FM:

Separate but Overlapping

 

Many people with fibromyalgia may also be diagnosed with interstitial cystitis, or vice versa. As in many chronic pain cases, it’s quite common for two or more pain syndromes to overlap.
Depositphotos_33851191_m

Interstitial cystitis (IC) is a chronic pelvic pain disorder that affects an estimated 847,000 adults, 94% of whom are women. Symptoms vary from case to case and even in the same individual. They range from mild discomfort, pressure, and tenderness to intense pain in the bladder and pelvic area.

Oftentimes, patients with IC are
misdiagnosed with irritable bladder,
prostatitis, cystitis, urethral syndrome,
or are even sent away without a diagnosis.

A diagnosis of IC is based on the presence of urinary urgency, urinary frequency—people with severe cases may urinate as many as 60 times a day—bladder or pelvic pain, ulcers, and inflammation of the bladder wall. The inflammation can lead to a scarring or stiffening of the bladder, a reduced capacity to hold the bladder, and glomerulations (pinpoint bleeding in the bladder lining caused by recurrent irritation).

Overlapping but Not Equal

One 21-year-old patient, Amanda, saw two separate physicians who both diagnosed her with an “irritable bladder,” and both told her that her fibromyalgia (FM) was the cause of her reoccurring pelvic pain. But a third urologist, who had considerable experience working with pelvic pain conditions, ordered a cystoscopy with hydrodistention, which helped confirm her IC diagnosis.

Read More Interstitial Cystitis and FM: Separate but Overlapping

 

The Calculus of Pain

By David L. Katz, MD; Chief Medical Officer of the Community Pain Center

 

My wife and I have 5 children, and as they’ve grown up and become more independent, it has become ever more complicated, and ever less common, to get all 7 of us together. Like all families, we have an almost limitless capacity to drive one another crazy–but we all really love one another. So those occasions to convene the whole tribe are precious to us all.

Katz Family

We had just such an occasion planned last spring for Family Weekend at the University of Florida, where one of our daughters recently completed her freshman year. We were starting from Connecticut, New York, and Massachusetts–and the plan was to converge on Gainesville. But out of the 6 of us with tickets, only 5 got on their planes. My daughter living in Boston didn’t make the trip, because at the last minute, she was afflicted with abdominal pain, nausea, and vomiting pretty much out of the blue. So out of the blue she stayed, stuck in bed. She described the episode to me, and in a young healthy person, it sounded like a trivial, if ill-timed, bout of gastroenteritis–perhaps food poisoning. I thought nothing more of it. We missed her in Florida, but she promptly recovered–and life resumed its customary cadences for us all.

“When you hear hoof beats,
think horse not zebra.”

Until several weeks ago, when my daughter called me from Boston. My wife is far more the family concierge than I; all reports of routine comings and goings tend to come to her. When I get a direct call, it is almost invariably of the “please send money, Dad” or “does this need stitches?” variety. This was, predictably, one of those. My daughter was having another bout virtually identical to the first. And that changed the calculus entirely. In medical school, we are taught that “when you hear hoof beats, think horse not zebra.”
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Myers Cocktail for Fibromyalgia: Does It Work?

By Madeline Vann, MPH | Medically reviewed by Niya Jones, MD, MPH

 

A largely unproven treatment appears to help some people with fibromyalgia pain. Find out about this controversial approach.

Think a cocktail might help you better manage your fibromyalgia symptoms?
Fruit Juice at The Beach

We’re not talking about a fruity drink with a cherry and an umbrella. Many people who are living with fibromyalgia swear by the Myers cocktail, an intensive vitamin and mineral dose delivered once a week intravenously. Both patients and practitioners report that this infusion–named for John Myers, MD, the Baltimore doctor who first experimented with a vitamin and mineral mix of magnesium, calcium, B vitamins, and vitamin C—helps ease fibromyalgia pain and other symptoms, such as profound fatigue.

According to fibromyalgia researcher David Katz, MD, founding director of the Prevention Research Center at Yale University in Derby, Connecticut, about 12,000 people across the United States are treated with the Myers cocktail, and about four out of five say the treatment helps ease fibromyalgia symptoms. The treatment is considered to be a form of complementary and alternative medicine (CAM), not traditional treatment, which includes prescribed medications. However, people often are willing to try novel approaches because living with fibromyalgia is often challenging and fibromyalgia symptoms can be so persistent.

Read More Myers Cocktail for Fibromyalgia: Does It Work?

 

Depression’s Relationship with Pain

People with a depressive illness cannot merely “pull themselves together”
and get better.

It’s Not Just the Blues

A depressive disorder is not the same as a passing blue mood. It is not a sign of personal weakness or a condition that can be willed or wished away. People with a depressive illness cannot merely “pull themselves together” and get better.

Depressed woman in front of a bench

Mary Larson explains, “I was experiencing extreme pain in my lower back, right leg and lower abdomen. Since I had no insurance, I stoically dealt with it. On a day-to-day basis, my pain was at a 9 or 10. After three months at my new job with health benefits, I was finally able to see an orthopedic surgeon. The MRI showed a 90% compression on two sections of the lumbar region. Two weeks later, I was in surgery. Over the next six years, I had another back surgery and a cervical fusion on two sections of my neck.”

Her depression returned and now at 45 years old, Mary is taking antidepressants and anti-anxiety medications to help her cope. “I face pain every day and have a numb right leg. The medication makes a huge difference in my ability to cope, but I have found that exercise, minimizing my ‛alone’ time, and building a relationship that entails excellent communication with my health care professionals is as important as the medication itself.”

When diagnosing a patient it is important for doctors to evaluate if the back pain caused the depression, or if back pain is a result of the depression.

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What is Advocacy?

Is advocacy meeting with your elected
officials? Or drawing awareness to a cause? What about coordinating a campaign?
Advocacy is a general term that applies to all this and more.

Advocacy takes place on the grassroots level and the organization level. Most organizations have staff that specializes in government relations; these people develop and execute an advocacy plan specific to their organizations’ issues and work with constituents in the organizations’ networks to understand how major policy issues affect communities around the country.

While government relations professionals possess the expertise necessary to build an effective policy agenda, it is their grassroots counterparts that seal the deal. “Grassroot” and “grasstop” activists refer to people in a community who want to make a difference on behalf of an issue. These individuals are passionate about an issue because it directly affects them or a loved one, or they simply just want to make a difference. They are willing to make phone calls and legislative visits, and even to rally in order to promote an issue.
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Holistic Care: Can We Handle the Truth?

By David L. Katz, MD; Chief Medical Officer of the Community Pain Center

 

Colleagues and I first opened the doors of the Integrative Medicine Center at Griffin Hospital in Derby, CT in 2000. We developed a model of care that was virtually unprecedented at the time, and remains extremely novel today. Our patients, who tend to be very complex, frustrated by the need for help they can’t find, and at times rather desperate, are seen and evaluated by both a naturopathic physician, and either me or my conventionally trained counterpart (I am a product of conventional medical school education, and sequential residencies in Internal Medicine and Preventive Medicine). We then put our two heads, and our two perspectives, together with those of the patient—and explore treatment options across a broader spectrum than either kind of practitioner could offer alone. The basic motivation for the model was the simple notion that two heads are better than one, and that holistic care was better than reductionism.
Elderly patient
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