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Fibromyalgia and its associated syndromes can begin with any number of symptoms. Some patients report an initial experience of flu-like aching, others find their energy levels sinking lower and lower with each passing day. Personally, I knew something was wrong when I was driving home from work one night and felt a normal stress headache gradually building into something much more alarming. I had never before experienced a migraine headache, but I was about to become well acquainted with one. After a few days of an intensely painful hammering sensation behind my eyes I sought medical intervention, but nothing worked. Two months, several different painkiller prescriptions, and an MRI later, I was nearly suicidally desperate to end the pain. Eventually the migraine went away, but my body was never the same. That was the beginning of my battle against fibromyalgia (FM).

Doctors rarely seem to connect headache issues with fibromyalgia, but when a group of FM patients gets together, sooner or later the conversation almost always turns to headaches. Migraines are a commonly shared symptom, and everyone seems to have a preferred method of relieving the pain or preventing the headaches altogether. Since fibromyalgia patients often have several debilitating symptoms, it is not uncommon for patients to take a large number of prescription medications; so sufferers are always on the lookout for effective ways to manage their symptoms without adding another pill. Today’s Huffington Post has good news on that front. A new study conducted by the Miami School of Medicine and published in International Journal of Neuroscience found that massage therapy, when performed correctly, can be a very effective way to alleviate the pain of migraine headaches:

Performed by the University of Miami School of Medicine, as published by the International Journal of Neuroscience, two groups of migraine suffers were studied. The first group (control group) took their prescribed medicine for the entire month, but did not receive massage therapy. The second group took their prescribed medicine as well, but also received a weekly massage. 60% of the massaged group had absolutely no migraines or headaches for the entire month. The massage therapy also helped to alleviate sleep problems and increased serotonin levels.

The University of Miami played around with several different protocols in treating the migraine sufferers. They found the most success with the following treatment regime: between migraine attacks, deep tissue work around the base of the skull, neck, shoulders, and upper back helped to relieve tension contributing to the recurrence of migraines. A side note with regard to deep tissue work: I would never let a massage therapist go deeper on you than you can tolerate comfortably and in a relaxed way. If you can feel your body tensing, your jaw grinding, your heart racing, these are a few red flags that you are likely producing cortisol and other hormones associated with stress, thereby creating diminishing returns for yourself in the form of even more tension — and possibly an aversion to massage. If it were me on the massage table, I would say, “Too much!” or “easy there”, “back off, bruiser”, or even the old favorite, “Uncle!”

When a migraine sets in, the scientists at the University of Miami had the most success with the sufferers face up only. Deep massage anywhere near the head at this time worsened the migraine. Light touch brought on relief. However, stimulation of the hands and feet with circulation enhancing massage helped to draw blood (and pressure) from the head to the extremities, alleviating the pain significantly.

So if you’re a migraine sufferer, give massage therapy a try, and let us know how it works for you!

Has anyone ever told you that saying “Yes” can be hazardous to your health?

If not, Dr. Edward T. Creagan, an oncologist with the famed Mayo Clinic, is telling you so now. Earlier this week the Mayo Clinic’s online Stress Blog featured an article by Dr. Creagan entitled “Learning To Say No Crucial To Survival.” That’s right, saying “no” is not just okay, it is vital to your health and wellbeing.

With the bewildering pace of technology and with the globalization of commerce, events and circumstances around the world can impact each of us in a second. So what can we do from a practical perspective to keep us focused and on task? For many of us, it is the acknowledgment that yes, it is OK to take care of ourselves. Yes, it is OK to get a good night’s sleep. Yes, it is OK to turn down that business luncheon or that early morning meeting and simply say, “Thank you, but this will not work with my schedule.”

We are clearly hearing very loudly that if we continue to give and do not replenish our minds, bodies, and souls our tank will be dry, the reservoir of energy runs out and there is nothing left.

If living with fibromyalgia teaches us one thing, it’s how to prioritize. As people who live with a serious limitation on the amount of energy available to us on a daily basis, we have no choice but to pick and choose which tasks and issues we will spend that energy on. Not only is it vital that we prioritize the demands on us; we must also save enough energy for our bodies to heal and replace the energy we spend during each day.

Those who are fortunate enough to be healthy may not always understand just how important conserving our energy can be, and that can make it particularly difficult for us to decline a request. This is one of the reasons why education about fibromyalgia is so important. But you can’t help to educate others until you have learned to accept and even appreciate your own reality. You may not be able to accept every request or offer that comes your way, even if you would like to, but neither can anyone else. Although energy conservation is particularly important for people living with an illness, it is a skill that everyone must learn at some point in order to handle the stress that comes along with daily life. We just learn it a little better than most. Dr. Creagan’s article reminds us that we are not so different from the rest of the world, and in fact our illness has forced us to develop necessary skills that we otherwise might not have learned. Listen to the people around you and chances are good that you will sometimes hear them complaining about how they never have enough time or energy. Then smile, knowing that you can teach your friends a thing or two about managing priorities!

Click here for more about learning how to say “No”

How To Choose A Doctor:

A Guide For Fibromyalgia Patients

One of the most difficult decisions a fibromyalgia (FM) patient will face is finding the right doctor. There is certainly no shortage of doctors available, but the rarity of finding a doctor who is caring, competent, and specifically knowledgeable about FM leaves many patients feeling frustrated or even hopeless about the prospect of finding a good physician. Even when they do find someone who meets their needs, there can be difficulties with insurance companies, the cost of treatments, or even transportation to and from appointments. In the long run, however, the selection of the right doctor is a major factor in maximizing a fibromyalgia patient’s quality of life; the choice should not be made hastily. FM is a complicated, long-term condition which requires special training and skills on the part of the physician; treatment should not be left in the hands of your average family practice or primary care physician.

Following is a list of things to consider when choosing a doctor to diagnose and treat FM. You can write down the tips that are helpful to you or the questions you want to remember to ask your doctor – whatever helps you to take an active role in your own health and treatment. Remember, your doctor is your best link to the medical community and should be one of your greatest advocates in the fight against FM, so take your time and find the right doctor for you!

Tips for finding the right doctor to treat your fibromyalgia:

• Take an active role in your own treatment. Your health and wellbeing are too important to leave up to someone else; educate yourself on your condition and learn about the most common treatment options so that you will have a basis on which to evaluate your doctors’ recommendations. (This is also a major step in helping you to regain control over your own life, especially if you are experiencing symptoms of depression such as feelings of helplessness or hopelessness about your medical condition.)
• Find a doctor who will work WITH you. Your doctor should be willing and able to discuss your condition clearly, and support you in educating yourself and your loved ones about fibromyalgia and available treatment options.
• Ask reasonable questions, and require reasonable answers. A doctor may have all the medical knowledge in the world, but if s/he can’t or won’t answer your questions or listen to your concerns, chances are that you will be disappointed with the results. A good doctor will listen closely to your medical concerns, and will ask (and answer) reasonable questions.
• Consider more than one doctor. Maybe you’re one of the lucky few who already had a great doctor when you became ill, but most patients have to reach outside their comfort zones to find a doctor who is very familiar with FM and its treatments. If possible, you may want to consider specialists in areas more likely to see many FM patients, such as rheumatology, neurology, or endocrinology.
• Ask for referrals. If you know someone who can recommend a good doctor, especially if you share symptoms in common, that is usually as good a place as any to start your search. Even if they can’t help you, they may at least be able to refer you to a fellow doctor who can. Never be afraid to ask a doctor for a referral (or a second opinion). If you don’t know anyone who can recommend a doctor, do some research on the internet and find a specialist near you. If you don’t know where to start, you can contact organizations like the Fibromyalgia Network for help.
  
• Consider your budget, but don’t let it stop you. No matter how wealthy you are (or aren’t), you are liable to end up paying more than you would like for medical care, treatments, prescriptions, etc. Financial hardship is a common experience among FM patients, but it shouldn’t stop you from continuing to search for the right doctor. Remember that the right doctor will help you to maximize your health and quality of life, and may even be a key in helping you maintain or return to work. In the long run, your health is worth the financial investment.
• Be wary of clinics. Specialty clinics which focus primarily on FM and similar conditions do exist, but they are NOT all equal. Most of them will make an effort to help you manage your symptoms, but many will not accept insurance and some will soak up all of your financial resources before you have really found the best treatment or combination of treatments for you, and then stop treatment altogether when you can’t afford to continue. Don’t set yourself up for failure by trusting them just because of their name; be as cautious as you would with any independent doctor.
• Go beyond your insurance. Chances are good that if you are like most Americans today, you are under-insured or uninsured. If you are fortunate enough to have health insurance, it makes financial sense to work within your network as much as possible. But if you have exhausted your in-network options and are not satisfied with the results, consider going outside of your network. Many doctors will consult with you on an as-needed basis, recommend a treatment, or perform tests which can then be brought back to an in-network doctor for follow up. If it is what you need to get healthy, it is worth the extra cost. If you don’t have health insurance, it may take you longer to find a good doctor whom you can afford, but you can still find one and you shouldn’t give up looking until you do.
• Be patient. If you don’t find a doctor who understands what you’re going through and helps you find the most effective treatment for you the first time out, you’re not alone. Keep looking. Many patients see five or ten or more doctors over a period of years before they find the right one. But once they do, they realize the search was worth it.
  
• Give it some time… Doctors are people too, and sometimes they have bad days. In fact, they seem to have more bad days when they’re handling a disorder as complicated and poorly researched as fibromyalgia - so unless you leave the office feeling violated or completely dismissed, attend a few appointments before you make a final judgment on their ability to help, especially if they’re within your price range. Some doctors even respond better if their first suggestion doesn’t seem to “cure” your symptoms immediately, and take it as a personal challenge to get you feeling better.
• …But don’t waste your time. Once you have determined that, for whatever reason, a certain doctor is not meeting your needs, move on. There are thousands of other doctors, and even if you have to travel a little further or pay a little more to find the right one for you, there’s not much point in continuing to see someone who has nothing more to offer you. Don’t make the mistake of getting into a power struggle or a helpless cycle with a doctor who isn’t helping, it is a waste of your precious energy (and money).

Why Social Security Benefits Are Disappearing

People with disabilities are already learning first-hand what America’s baby-boomer generation will soon discover for itself; the Social Security system is underfunded, and as a result benefits are quickly disappearing.

The Social Security system was developed during the Roosevelt administration as a response to widespread poverty during the Great Depression. Amended in 1965 to include disability benefits, the Social Security program was specifically developed to help prevent future situations that might create another depression.

Nearly all working Americans pay into the Social Security system, regardless of age. The Federal Insurance Contributions Act (FICA) requires a certain portion of every paycheck to be paid directly to the U.S. government, to be used specifically for the funding of social security programs including Medicare, retirement pension, survivor benefits (pension for a widow or widower), AND disability insurance. These are the taxes that make your paycheck look smaller than you think it should (oh, those taxes). But what are Americans really getting for their money?

Most people are familiar with one aspect of Social Security – retirement funds. Currently, citizens can apply for social security retirement benefits when they turn either 65 or 67, depending on the year they were born. But what if something happens to the primary wage earner in your family before retirement age? Well, workers who become disabled due to an injury or illness are supposed to be eligible to recover some of those taxes in the form of Social Security Disability Insurance (SSDI) benefits. Unfortunately, Americans with disabilities are discovering that what they are eligible for in theory and what they can actually recover are two very different things.

The reason for the gap between people who should be eligible for benefits and those who are actually able to receive benefits is simple math. The Social Security system used to be fully funded by FICA taxes; the payroll taxes for each year paid for the benefits given out each year. Indeed, there was a surplus of taxes above the needs for each year’s benefits. In order to maintain the system, the government created a Social Security trust fund in which they invested the remainder of the taxes. Eventually, two situations arose which had the effect of depleting the fund.

First, the U.S. government borrowed against the assets in the fund. Borrowing against assets has the automatic effect of devaluing the asset; if you have a house worth $100,000 dollars (lucky you), then you have $100,000 is assets. If you take out a loan worth half the amount of the house, $50,000, then you only have a remaining $50,000 in assets – half what you had without the loan. Though the example is simplified, the same is true of the Social Security trust fund. The government borrowed against the fund to pay for other programs, thus the value in the trust fund began to decrease.

Second, the baby boomer generation reached maturity. In the 1980’s, the government’s financial projections stated that there were so many people in the baby boomer generation (and future generations, as they had their own children) that the Social Security trust fund, already devalued by the borrowing the government had done against it, would not be able to sustain itself by using FICA taxes. In other words, the Social Security system is going bankrupt. There are more people who need benefits than there is money in the system. The system was designed to be a pay-as-you-go system, with each year’s payroll taxes paying for the same year’s benefits. It was not designed to be a financial asset for the U.S. government to borrow against, nor did the original design take into account the exponential growth in the population.

Unfortunately, rather than educate citizens about the system, the government tends to provide hyperbole and half-measures which do more to cover up the problem than they do to solve it. So instead of delivering benefits to everyone who is eligible, the government now finds ways to reduce benefit payouts. The minimum retirement age at which workers can apply for pension benefits is rising. Fewer and fewer people are able to receive medical benefits, such as Medicare or disability insurance, even though they paid into the system as FICA required.

Rather than explain to applicants why benefits are being denied, the government takes advantage of our nation’s premium on values such as independence and strong work ethics, and blames individuals for not “deserving” benefits, ostensibly because they are not trying hard enough to earn money or live independently. If you were born after 1937, you do not “deserve” pension benefits at age 65 (and the age will continue to be raised). If you are not dying in the courtroom (sometimes even if you are), you do not “deserve” disability benefits. If you are denied disability under SSDI, you do not “deserve” Medicare benefits. The result is that American citizens, citizens who have worked and paid into the Social Security system, are being denied Social Security benefits left and right. Our most vulnerable citizens, those in poverty, the elderly, the disabled, children, the unemployed or under-employed, are being left to fend for themselves, while the government fosters the myth that denials are a result of applicant fraud - not federal fund mismanagement. But the fact is that even according to the Social Security Administration’s public reports, only about 12% of SSDI benefits are terminated due to lack of medical need; the remaining terminations are due to legal technicalities. The problem does not lie with the applicants, who are fully occupied with meeting basic survival needs. The problem lies in the government’s misuse of the system. Privatization, although it may become necessary, will not fix this system. Just as we currently have a private medical system and our most vulnerable citizens lack heath care, a private social security system will leave these (and more) citizens vulnerable to abject poverty, along with all the associated societal ills.

To learn more about the problems facing the Social Security system and what you can do to change it, go to socialsecurityreform.org

FDA approves Cymbalta to treat neuropathic Fibromyalgia pain

The U.S. Federal Drug Administration (FDA) this week approved the drug duloxetine HCl, sold under the name Cymbalta, for treatment of the widespread pain associated Fibromyalgia (FM).

Cymbalta has been in use as an anti-depressant since the mid-1990’s, but new test results indicate that the drug can also play a role in relieving the type of neuropathic pain commonly experienced by fibromyalgia patients. Cymbalta was originally developed by the Eli Lilly pharmaceutical corporation for use as a selective serotonin and norepinephrine re-uptake inhibitor (SNRI), a class of antidepressants meant to improve upon the previous selective serotonin re-uptake inhibitors (SSRI’s) such as Paxil, Prozac, and Zoloft. The drug works on both serotonin and norepinephrine, neurotransmitters known to be involved in both the regulation of moods and the experience of pain. These antidepressants increase the amount of neurotransmitters in the body’s circulation (think of “re-uptake” as recycling; once a neurotransmitter acts on the nerve, it is re-distributed back into the brain for further use rather than being absorbed and broken down by the body). Although SSRI’s are generally thought to produce fewer side effects because they only work on serotonin, some patients respond better to drugs which target both neurotransmitters at once.

Data Highlights

Lilly established the efficacy of Cymbalta in two pivotal three-month clinical trials involving 874 patients with fibromyalgia. In both studies, Cymbalta reduced pain at study endpoint compared with placebo as measured by the Brief Pain Inventory (BPI) 24-hour average pain scale.(vi),(vii) The BPI is a scale that measures the severity of pain.

Significant improvement in pain for Cymbalta vs. placebo was observed in the first week of each study. Fifty-one percent and 55 percent of patients on Cymbalta had a 30 percent improvement on the BPI at endpoint (clinically meaningful relief is considered at least 30 percent pain reduction(viii)).

In addition, 65 percent and 66 percent of patients taking Cymbalta 60 mg daily reported feeling better at endpoint as measured by the Patient Global Impression of Improvement (PGI-I). The PGI-I is a patient-rated scale that evaluates how much improvement has occurred since beginning treatment.

Cymbalta 60 mg was superior to placebo on the Fibromyalgia Impact Questionnaire (FIQ) Total Score. The FIQ is a scale that is used to assess and evaluate the impact of fibromyalgia on aspects of health and functioning believed to be most affected by the disorder.

In four pooled studies, the most commonly observed adverse events in Cymbalta-treated patients with fibromyalgia (greater than or equal to 5 percent and at least twice placebo) were nausea (29 percent), dry mouth (18 percent), constipation (15 percent), decreased appetite (11 percent), sleepiness (11 percent), increased sweating (7 percent) and agitation (6 percent). In the placebo-controlled clinical trials, the overall discontinuation rates due to adverse events for Cymbalta vs. placebo were 20 percent and 12 percent, respectively…

Although Cymbalta has been safely used for years, it has not escaped controversy. Serious side effects can occur in patients taking the drug, particularly if prescribers fail to consider or are unaware of potentially harmful interactions with other medications. In 2007 the FDA issued a warning against using SSRI or SNRI antidepressants with certain medications commonly prescribed for migraine headaches. However, many patients are finding the relief the drug provides from both pain and depression to be worth the risks. As with any medication, the potential risks and benefits should be discussed with a qualified physician who is aware of all medications the patient may be taking in order to minimize the risk of side effects and drug interactions.

The body’s cortisol feedback system

A study published in the recent edition of the Journal of Chronic Fatigue Syndrome suggests that the hormone cortisol may play a significant role in the etiology and symptomatology of Chronic Fatigue Immune Deficiency Syndrome (CFIDS) and Fibromyalgia (FM).

Patients who suffer from either syndrome know firsthand how difficult it can be to find effective treatments for the conditions. The new study, conducted by Torrance, CA Dr. Kent Holtorf, states that patients may experience significant relief from symptoms of exhaustion and pain by including little as 5 - 15 mg of cortisol per day in their treatment regimens. A summary on the Occupational Health and Safety website states:

… Kent Holtorf, M.D., medical director of the Torrance, Calif.-based Holtorf Medical Group Center for Endocrine, Neurological and Infection related illness, is advising a simplified treatment process that may help alleviate the diseases’ symptoms. From an extensive review of more than 50 published studies that assessed adrenal function in CFS and FM patients, Holtorf found that the majority of CFS and FM patients displayed abnormal adrenal function due to hypothalamic-pituitary dysfunction. The comprehensive review also showed that the majority of patients could be treated for this adrenal dysfunction with cortisol, in doses of as little as 5 mg to 15 mg a day, as part of a multi-system treatment.

“This research provides a new understanding that treating the known causes of illness in CFS and FM can improve the symptoms and quality-of-life of patients who suffer from these conditions,” Holtorf says. He adds that his research was confirmed in an observational study following the conditions of 500 patients from his clinic where, of the patients given cortisol as part of their treatment protocol, 94 percent showed improvement by the fourth visit, 75 percent noted significant improvement, and 62 percent reported substantial improvement. In addition, by the fourth visit energy levels and a general sense of well-being for patients doubled, Holtorf says. The effectiveness of this multi-system treatment was further confirmed through the analysis of the cumulative findings of more than 40 independent physicians and more than 5,000 patients, the study says.

Though no specific tests currently exist which can definitively diagnose CFIDS or FM, physicians can perform laboratory tests to determine patients’ cortisol levels. It is unclear whether patients whose levels fall within the normal range might still benefit from additional cortisol treatment.

* Editor’s Note - Several years of personal experience with Dr. Holtorf and his clinic have taught me caution regarding his level of enthusiasm for new treatments. Though we have every reason to hope that this study marks significant progress in the understanding and treatment of these conditions, the urge to believe in a single miraculous cure, while understandable, must be tempered with the acknowledgment that CFIDS and FM are complicated syndromes which require a great deal of further study by the medical community.

Devil Ray Rocco Baldelli is feeling the fatigue.

The Sports Illustrated website expands on a story in their March 24 issue regarding Tampa Bay Devil Rays’ outfielder Rocco Baldelli’s mystery illness, which the baseball player referred to as “metabolic and/or mitochnodrial abnormalities.” Sufferers of Chronic Fatigue Immune Deficiency Syndrome (also known as Chronic Fatigue Syndrome and Myalgic Encephalomyelitis) recognize this as the current leading theory behind the syndrome’s diagnosis.

Baldelli described the same frustration with symptoms and a disappointing medical response felt by many CFIDS sufferers:

“My body is literally spent after a very short amount of time out on the field, which makes it extremely frustrating and difficult,” he said, at times appearing on the verge of tears. “But it’s something that’s kind of a reality right now, something we’re dealing with the best that we can.”

The Rays sent him to several doctors during the offseason, hoping to determine why he has been unable to recover from what they initially believed was a routine hamstring injury. The decision to place him on the DL was made after the experts reached a consensus on Baldelli’s condition.

“It’s one of those things, unfortunately, that they can’t diagnose 100 percent,” Rays executive vice president of baseball operation Andrew Friedman said.

“There’s a high confidence level that it is this. But we’re still dealing with a little bit of an unknown. We’re going to do everything possible from this day forward to continue to dig and figure out and try to identify exactly what it is and also how to treat it.”

The diagnosis comes after several injury-plagued seasons in which Baldelli’s body seemed unable to make the usual recovery after routine injuries. Baldelli, who hit .289 and stole 27 bases in his rookie season, began the season on the disabled list and will likely see his contract bought out in April.

Baldelli’s diagnosis is especially significant to the CFIDS/FM community, members of which face daily disbelief and accusations of laziness regarding their condition. The fact that professional athletes are no more immune to the debilitating symptoms of the condition than the general population might help to combat lack of education about the illness.

Unfortunately the stigma of the term “CFS” remains prominent, as illustrated by S.I.’s failure to actually name the syndrome anywhere in the article. After all, if celebrities with a $4 million bailout can’t say the words, what level of bias must regular sufferers face?

COMING SOON

Welcome to the FightFM.com blog!

We are in the process of creating a comprehensive website for patients who suffer from Fibromyalgia, complete with a regularly updated research blog. Please come back soon to see the latest news about Fibromyalgia.