January 26, 2020

Commonly Prescribed Fibromyalgia Meds Work only 20% of the Time Study Says

ScienceDaily.com reports on a recent medical study conducted in Germany which shows that two medications commonly prescribed for fibromyalgia offer benefit to only about 1 out of every 5 patients.

The study looked at testing conducted on 6,000 adults – mostly middle aged females – who were prescribed duloxetine (Cymbalta), milnacipran or a placebo.  Study participants were asked to rate these drugs on a “quality of life” scale.  Only 22% of participants reported significant improvement, while 21% discontinued using medications because of side effects.

A future study will evaluate pregabalin (Lyrica) later this year.

“The medical field does poorly with the treatment of fibromyalgia in general,” says Brian Walitt, M.D., M.P.H., a co-author of the review and an expert in pain syndromes at Washington Hospital Center in Washington, D.C. “Chasing [a cure] with medicine doesn’t seem to work.”

This relative ineffectiveness of prescription medication should not be a surprise to Social Security disability claimants who are applying for benefits due to chronic pain, cognitive decline and fatigue associated with fibromyalgia.   Obviously individuals who allege that the are disabled are not benefiting from medications, and claimant’s attorneys often note symptoms of depression due to the absence of any viable treatment options.

If you have been prescribed Cymbalta, Lyrica or any other prescription medication by your doctor, it is important that you make every effort to remain complaint with recommended treatment.   Social Security judges are often not very understanding if a claimant decides to stop taking a medication on his or her own, even if that medication does not seem to be working.

At the very least, report to your doctors any concerns about the effectiveness and side effects of medications so that your medical record will reflect what you have experienced.  Judges will use non-compliance as a basis for denying claims and this is especially true for cases involving a condition that arises from symptoms that are inherently subjective and self -reported.


Fibromyalgia Patients: Avoid Accidental Overdosing on Tylenol

Many fibromyalgia patients use Tylenol, either in conjunction with other pain medications (such as tramadol) or as over-the-counter pain relief for mild-symptom days. But a recent study warns that even the tiniest overdose of acetaminophen can result in death.

Researchers from the University of Edinburgh (Scotland) reported that their study found that taking even a little too much acetaminophen over time is more dangerous, in fact, than taking a single much-too-large dose.

Dr. Kenneth Simpson of the University of Edinburgh, the study’s lead author, stated in a press release accompanying the study’s publication:

They haven’t taken the sort of single-moment, one-off massive overdoses taken by people who try to commit suicide, but over time the damage builds up, and the effect can be fatal . . . Staggered overdoses or patients presenting late after an overdose need to be closely monitored and considered for the (acetaminophen) antidote, N-acetylcysteine, irrespective of the concentration of (acetaminophen) in their blood. [Read more…]

Studies Linking Mouse Retrovirus with Fibromyalgia Appear Flawed

Social Security disability lawyers representing fibromyalgia clients often seen similarities in their clients.  Most fibromyalgia clients are “Type A,” overachieving females between the ages of 30 and 60 who experience a gradual onset of fatigue, myofascial pain, mental confusion, digestive upset and balance issues characteristic of a FM/CFS diagnosis.

Many of these fibromyalgia patients go from doctor to doctor looking for a cure, but, of course, there not only is no cure, but there is no consensus in the medical community as to how to objectively test for this condition.

Medical researchers have been working on this problem and over the past few years there have been a number of studies published that purport to identify unambiguous markers that will enable practitioners to objectively diagnose FM/CFS.

One of the more intriguing medical studies in recent years involved the Whittermore-Peterson Institute and researcher Judy Mikovits.

The fibromyalgia and Chronic Fatigue Syndrome (CFS – also sometimes referred to as “CFS/ME,” where “ME” stands for myalgic encephalomyelitis) community has been roiled by a controversy over the news, reported first in 2009, that a mouse retrovirus might be involved in CFS.  Now, the research group which first asserted the connection between xenotropic murine leukemia virus-related virus (XMRV) and CFS is at the center of another controversy – this one of a decidedly non-medical nature. [Read more…]

Fibromyalgia and Post-Traumatic Stress Disorder: Associational Link or Causative Link?

One of the most prevalent sources of confusion in health information and news is the report of one disease having been found “linked to” another disease. But it’s important to understand that just because there’s a correspondence or a certain frequency of occurrence in the general population, that doesn’t mean that one disease causes the other. The relationship between the two illnesses could simply be associational — in other words, these two conditions sometimes occur together.

The question becomes even more confusing when reports suggest a greater occurrence of one disease in patients diagnosed with another illness. Take, for example, the studies suggesting that post-traumatic stress disorder (or PTSD) is more prevalent in fibromyalgia patients. The study linked to in the previous sentence was conducted by Drs. H. Cohen, L. Neumann, and others at the Ben-Gurion University of the Negev, in Israel.

The findings of this study indicate that a statistically significant portion of the fibromyalgia population studied also had PTSD. From the study’s abstract:

57% of the FM sample had clinically significant levels of PTSD symptoms. The FM patients with PTSD reported significantly greater levels of avoidance, hyperarousal, reexperiencing, anxiety, and depression than did the patients without clinically significant levels of PTSD symptoms. The prevalence of PTSD among the FM patients in this study was significantly higher than in the general population. Women with FM and PTSD reported a greater number of past traumatic events than did their male counterparts.

CONCLUSIONS: The results represent the first comprehensive study applying structured clinical assessment of trauma exposure and PTSD to a group of FM patients. This study shows a significant overlap between FM and PTSD, according to the currently accepted diagnostic criteria for each.

But does that mean that fibromyalgia is “caused by” or somehow “triggered by” PTSD? The study found nothing of the sort, of course, but these findings have been cited in news articles that can present misleading suggestions of some causative connection that hasn’t been proven yet.

Another study from the same institution looked at whether PTSD and fibromyalgia were really the same illness. While they do share some symptoms in common, it is generally thought that fibromyalgia results from actual neurological changes as opposed to some psychological trauma. It could be that in many cases, an initiating physical trauma causes both PTSD and fibromyalgia.

Yet a lazy researcher could well take that association as grounds for concluding that fibromyalgia is “all in your head” — which is clearly not the case. And given that fibromyalgia is too often relegated to some behavioral issue, as opposed to a systemic or neurological malfunction, that’s unfortunate.

It’s important for fibromyalgia patients to educate and inform themselves, but it’s also important to keep an objective view of studies that are reported in the press.

FDA Panel Rejects Xyrem as Fibromyalgia Treatment

WebMD reports that the United States Food and Drug Administration has rejected a drug called Xyrem as a treatment for fibromyalgia.  Although public comments (primarily from users testing the drug as part of the manufacturer’s trials) supported approval, and the FDA physicians acknowledge that the drug can reduce pain, the FDA advisory panel rejected the drug because of its similarity to GHB – the so-called “date rape” drug.

According to the FDA, Xyrem, or sodium oxybate, “is much better than the stuff you get on the street, and that is the problem.  Approving it for such a large patient population — 5 million people are estimated to suffer from fibromyalgia — would risk flooding the streets with a pharmaceutical-grade version of the highly controlled substance.

Xyrem is currently available for the treatment of narcolepsy.  It is a central nervous system depressant.

Narcolepsy sleeping pill Xyrem seems to improve fibromyalgia symptoms as well

It is great when a medication currently used to treat one condition is found to have properties that positively affect another health problem.  This is because much of the research has already been conducted and most of the side effects of the drug have been detailed.  Finally, the FDA has already given its stamp of approval for the use of the drug and doctors have been able to evaluate how individuals respond to taking the medication.  Such is the case with the sleeping pill Xyrem, which has been FDA approved to treat narcolepsy, but has been recently discovered to improve fibromyalgia symptoms as well.  It may also help with symptoms of fatigue, stiffness, and other varied symptoms, according to WebMD.

In a study of 334 patients suffering with fibromyalgia, researchers found that over half of the individuals taking Xyrem reported a thirty percent improvement in their pain.  The participants were initially split into two groups.  One group took Xyrem while the other participants took a placebo over a period of fourteen weeks.  At the conclusion of the study, fifty-four percent of participants taking a lower dose of the drug and fifty-six percent of participants taking a higher dose reported a thirty percent reduction in pain, WebMD reports.  This is compared with thirty-five percent of patients taking the placebo reporting less pain.  The researchers noted that the thirty percent reduction in pain showed an average improvement of pain, whereas the fifty percent reduction indicated a significant improvement.  What’s more is that many of the participants taking Xyrem noted that they felt an improvement in pain as early as the first week.

Participants did, however, report some side effects such as headache, nausea, and dizziness.  Additionally, the drug is made up of GHB, otherwise known as the “date rape drug,” and has the potential to be abused.  The researchers and doctors, however, argue that there are enough systems in place to prevent such abuse, and since its inception and use for narcolepsy, no abuse has been reported.

What is very interesting about this particular drug is that, according to this study, it outperforms the other drugs on the market specifically for fibromyalgia.  Xyrem is not a narcotic type drug like those marketed for fibromyalgia treatment, and that may be an added benefit for patients.  This study shows that there is the possibility of more drugs for the treatment of fibromyalgia, as well as the possibility of combining certain drugs, including Xyrem, to elicit an effective and quick response.  Despite the apparent success of this study, the FDA has still not approved the sleeping pill for use in fibromyalgia patients.  As with all new treatments, make sure to discuss using Xyrem in your daily treatment for the disorder.

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New way to diagnose fibromyalgia: Just look at someone’s gait!

Chronic illnesses like fibromyalgia are notoriously difficult to diagnose, and often, symptoms are characteristic of other conditions. People may live with fibromyalgia for years, never knowing why they are suffering with such severe pain. What may be worse is that they can be diagnosed with another condition entirely and not receive the medical attention they need. Their work, relationships, and daily lives can be adversely impacted, with no answers or relief. Now, a researcher from the University of Grenada has developed a new tool to accurately diagnose fibromyalgia. The unlikely method concentrates on the way a person walks, and when combined with specific diagnostic criteria, is very reliable in diagnosing the condition.

An individual’s walk is examined using various parameters, including: step length, time on each foot, time on both feet, walk spend, and sole pressure on the ground (Eureka Alert). The lead researcher believed that people living with fibromyalgia had decreased motor skills and also showed low performance in strength tests, body constitution, and psychological evaluations. From this belief came his theory that people with this disability have altered motion parameters that are then linked to decreased physical and psychological abilities, thereby limiting their quality of life. He decided to test whether fibromyalgia could be diagnosed on these altered motion parameters reliably.

The study focused on sixty-four women and twelve men diagnosed with fibromyalgia, as well as forty-five women and twelve men who were healthy and had no signs or symptoms of the disability. The participants underwent various tests regarding their medical and physical conditions. They found that those individuals who lived with fibromyalgia presented with definite altered motion capabilities compared to those who did not have the condition. Moreover, the fibromyalgia sufferers also had other symptoms that impacted their overall quality of life.

Although observing a person’s gait may not be likely used alone to diagnose fibromyalgia, it may be used in addition to diagnostic criteria to produce a more reliable result. The current testing criteria can often be misinterpreted and evaluating the way a person walks may provide that extra evidence needed to make a correct diagnosis. The earlier a person can be diagnosed with the condition, the easier it will be for them to get the necessary treatment and improve other areas of their life. Additionally, if the condition is so debilitating that they must stop working, having an accurate fibromyalgia diagnosis will allow them to seek disability benefits through the Social Security Administration.

Vibration therapy may help reduce balance problems associated with fibromyalgia

So many times chronic conditions such as fibromyalgia cause problems with daily living that most of us take for granted.  Fibromyalgia is most known for the debilitating pain that it causes, which can greatly impact an individual’s quality of life.  She can be in pain all over her body or in specific areas and be unable to work, go to school, or simply engage in daily activities such as cooking, walking the dog, or playing with a child.  Aside from the pain, however, fibromyalgia is also responsible for decreasing an individual’s balance, especially in women.  Now, according to Reuters, a study has shown how tilt platform vibration may be able to improve overall balance for fibromyalgia patients.

This new study is important because a lack of balance, coupled with crippling pain, can lead to many accidents and falls.  The condition is difficult on its own without having to then worry about falling on top of it.  The researchers noted that approximately half of those individuals living with fibromyalgia suffer with poor balance.  They also knew that tilt platform vibration improved balance, bone mass, and motor skills in elderly individuals, therefore, they wanted to test it with fibromyalgia participants.  The Spanish research team separated forty-one women, ages forty-one to sixty-five, with fibromyalgia into two groups.  Twenty-one were provided with vibration therapy, while the other twenty received their normal treatment regime without the vibration therapy.

Those who received the vibration therapy had three sessions with the platform providing vibration at a low frequency for twelve weeks.  They had a ten minute walking warm-up and up to six repetitions with the tilt platform.  The researchers found that the dynamic balance index improved by thirty-six percent in the vibration therapy group, while it remained the same in the control group.  Additionally and most welcome is that the women who weighed the most and had the worst balance saw the greatest improvement.

The researchers also believe that the vibration therapy slows bone mass loss and improves strength, which helps individuals to respond better to falling or the loss of balance.  They do note that more studies will be needed to see if the vibration therapy also reduces pain associated with fibromyalgia, as well as if the number of overall falls decreases.  If your balance has suffered as a result of fibromyalgia, you may want to discuss this type of physical therapy with your doctor.  It may just help you to better “balance” the effects of this chronic condition.

2 separate studies show that women suffering from fibromyalgia are not seeking appropriate treatment

We have all heard the old adage that men are from mars and women are from Venus.  It is true that men and women may approach some things very differently.  One of the areas that these gender differences exist in is in how men and women deal with pain associated with a chronic condition.  I was amazed this week when I came across two wholly unrelated articles discussing how women, who are more likely to suffer from a painful condition such as fibromyalgia, are also much more likely to dismiss their pain and not seek a proper diagnosis or treatment.  There were a variety of reasons as to why they did not seek medical advice about their pain; however, one common thread seemed to be that they felt they would not be taken seriously by a professional and that they could manage it on their own.  It seems that it is important for women to recognize that pain, especially chronic pain like that associated with fibromyalgia, is a medical condition, not simply a state of mind.

One of the articles, from the Black Women’s Health Alliance and detailed on PRNewswire, discussed a study conducted in Pennsylvania which found that many of the state’s women suffered from chronic pain but did not seek help for it.  Specifically, the study found that two-thirds of Pennsylvania women suffer from chronic pain, and over half of them do not seek treatment for their pain, even when it is so severe that they have trouble completely daily tasks or working.  When asked why they would not get treated, a majority of the women stated it was because they felt that insurance companies would not cover treatment for pain, unlike more traditional conditions, such as heart disease.  Additionally, the women felt that the pain was not something to worry about and that it could be handled privately.

The other article, from Pain Medicine News, discussed how twice as many women as men feel that they are not being taken seriously when they complain about their pain.  This perceived lack of sympathy often causes these women to refrain from seeking medical treatment even though their condition often impairs their daily activities and work environment/ability to work.  What is even more troubling is that fibromyalgia impacts seven times more women than men, so not only are more women not seeking help for their pain, but more women are suffering from a serious chronic condition and are not seeking help!  Fortunately, some researchers, medical writers, and health professionals have launched a website, www.healthywomen.org , to address these issues and educate women on fibromyalgia and pain management.  It provides references for doctors who specialize in treating fibromyalgia and how women can fully engage in their daily lives.

Knowing that this painful condition we call fibromyalgia is real and not something to be taken lightly is the first step to getting the necessary treatment.  Once you know what you are dealing with, you can then take the necessary steps to get the right therapy for you, file for social security disability benefits if you can no longer work due to your condition, and generally manage your life better.  Although men and women are very different, this type of chronic pain can impact us all the same.  It is important to seek help and educate yourself so that you can live the healthiest life possible.

Altering Your Breathing May Help Reduce Pain Associated With Fibromyalgia

When people are angry, become stressed, or get upset over circumstances in their lives, they are often told to “take a deep breath.” The thought behind deep breaththis is that taking in a slow, deep breath will allow them to refocus their energy and handle the situation more easily. Some new studies show that this same type of breathing technique may also work for people who suffer with chronic pain, such as fibromyalgia. Some researchers even believe that practicing breathing techniques on a regular basis can take the place of traditional drug regimes for certain individuals.

In the studies, scientists examined people who took half as many breaths as the average, healthy adult, which is approximately between twelve and eighteen breaths per minute. They found that individuals who cut those breaths in half were able to tolerate short-term pain from burns or cuts, as well as the chronic pain affecting muscles and joints. The research indicated that by reducing breaths to as few as six breaths a minute had a radical effect on pain experienced by individuals over the long term.

In the United States study, researchers evaluated a group of healthy, middle aged women and a group of women suffering from fibromyalgia, a chronic pain condition, for which there is currently no cure. The research team exposed the women to various probes that generated heat against their hands at different temperatures. The scientists wanted to measure how much pain they could tolerate. The women were instructed to take fewer breaths while handling the probes. After taking half the amount of normal breaths, the women reported that the pain was less intense than when they breathed normally. The researchers found that the pain was rated about the same in both groups when fewer breaths were taken.

The theory behind why fewer breaths may ease pain stems from the idea that slow, measured breathing has a direct impact on the sympathetic nervous system. Fibers within the nervous system help to regulate blood flow and skin temperature. It appears that taking fewer breaths dampens the sympathetic nervous system, which in turn blocks pain. Other believe that taking shallow, slow breaths help to get the oxygen to the tissues in a more effective fashion, thereby helping the body react to pain. Breathing techniques have been around a very long time and in various cultural settings. Practicing breathing is cost-effective, easy, and can fit into your everyday schedule with relative ease. If you do suffer from pain associated with fibromyalgia, try to decrease the amount of breaths you take and truly concentrate on your breathing. It could just be that you find some of your pain minimized upon taking a deep breath.