Fibromyalgia Awareness Day - New Site Announcement

May 12 is Fibromyalgia Awareness Day. I'm marking this day by introducing my new project, 101 Answers About Fibromyalgia.

This project is dedicated to not only those who have fibromyalgia, but those who love people who have fibromyalgia. The goal is to collect at least 101 questions about the condition and gather the answers from different experts around the world.

Regular visitors to this blog know that I've written about fibromyalgia before, both here and for other outlets. There are many people living with fibromyalgia who have no idea that they have it or they believe they do, but they've not been diagnosed. So it is important to write about it and to talk about it.

According to the most recent research, a study published in 2013 found that fibromyalgia affects between 0.5 to 5 percent of the population. The Centers for Disease Control (CDC) in the United States estimates that fibromyalgia affects 2% of the US population - or about 5 million adults, and that it affects women seven times more often than men.

More interesting statistics:

• While it's not a genetic disease, 28% of children who have a parent with fibromyalgia will eventually develop it themselves.
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• Adults with fibromyalgia are 3 to 4 times more likely to develop depression.
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• Thirty to 40% of people with fibromyalgia must stop working or switch jobs.
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• Fibromyalgia costs the U.S. economy an estimated $20 million per year.

Please visit my new site and leave your questions to be answered.

Electronic cigarettes - not as harmless as some may think

I'm not a proponent of electronic cigarettes, or e-cigarettes. While I concede that they may be the lesser of two evils, smoking a combustible cigarette or an e-cigarette, I still believe they are dangerous and should not be promoted.

I wrote a piece about e-cigarettes for Forbes.com last year (What Are Electronic Cigarettes and How Safe Are They?), for which I interviewed a physician and someone in the e-cigarette industry. The physician felt much like I do; he'd rather no one use them, but if they were truly being used by someone who would ordinarily be smoking regular cigarettes, then this would be better. The pro-electronic cigarette person denied that there were any risks at all and vehemently denied my questions as to whether the manufacturers were trying to get teens and children to use them. I might have believed him if the e-cigarettes didn't come in flavors clearly designed to appeal to children.

Those who advocate for electronic cigarettes make the following claims:

• They are not addicting as are traditional cigarettes
• You aren't "smoking," you're "vaping," because you aren't inhaling smoke, which is an irritant to the lungs
• You aren't inhaling many of the traditional cigarette ingredients/pollutants
• E-cigarettes can be a smoking cessation tool, helping people quit smoking traditional cigarettes.

Those opposed to the new cigarettes say:

• E-cigarettes are not effective as a smoking cessation tool because they don't rid the person of the hand-to-mouth and time-of-smoking habits, they just transfer them from traditional cigarette to e-cigarette form
• While you aren't inhaling smoke, you are inhaling vapor, which is not meant to go into your lungs. You are still inhaling substances that are not meant to be inhaled.
• Children and teens are drawn to them because of the marketing and flavors

Interestingly, the Centers for Disease Control (CDC) issued a press release on April 3, 2014, to notify the public of a significant increase in calls to poison control centers across all states in relation to e-cigarette use.

"The number of calls to poison centers involving e-cigarette liquids containing nicotine rose from one per month in September 2010 to 215 per month in February 2014, according to a CDC study published in today’s Morbidity and Mortality Weekly Report. The number of calls per month involving conventional cigarettes did not show a similar increase during the same time period."

Research has been ongoing since the introduction of e-cigarettes as doctors and regulators try to sort out the truth from the claims. The most recent study was just published last month. According to the study, undertaken by RTI International:

Electronic cigarette “vapors” are made of small particles containing chemicals that may cause or worsen acute respiratory diseases, including asthma and bronchitis, among youth, 

Although the FDA does regulate the sale of cigarettes and tobacco (both smoking and smokeless), it doesn't control the sales of e-cigarettes unless they are specifically marketed for therapeutic purposes. The FDA has proposed that it should cover "additional products that meet the legal definition of a tobacco product, such as e-cigarettes."

The FDA is encouraging people to submit their thoughts on e-cigarettes: Extending Authorities to Additional Tobacco Products.

As with regular cigarettes, I believe that as long as they are a legal product, if someone chooses to smoke that is their decision. I feel the same way about electronic cigarettes. If people choose to use them, that is their decision. However, I do feel it important to sort out what is true. Are they really harmless? Are they really effective smoking cessation products? It's not the use I am debating, it's the claims.

What do you think? Is there a place for e-cigarettes? What about the argument from the industry that they are not marketing it towards children and teens? What do you think?

The words we use to describe mental illness - how they matter

We hear the words often - words that imply that a person is a disease and the disease is a person. For example, we may say that someone is a diabetic or a hypertensive. But that's not right. The diabetes and the hypertension (high blood pressure) don't define the person. The person lives with or has diabetes or hypertension. Do you see the difference?

This use of words is particularly important when it comes to mental health. Someone may say that a sibling or coworker is a schizophrenic or that someone committed suicide. The first is wrong for the same reason that saying someone is diabetic is wrong. But what is wrong with "committed suicide?" A lot really, because people commit crimes - and suicide isn't a crime. 

Someone I love killed himself. I don't say he committed suicide. I say he killed himself or he took his life. He didn't commit a crime and by implying it with the words, his death is stigmatized even more.

How we use words evolves over time and writers and journalists play a role in how this happens. If writers repeat hurtful or incorrect terminology or phrases, the readers begin to think that this is normal and what they should be using too. Because of this, I was glad to see that the Canadian Journalism Forum on Violence and Trauma partnered last year with CBC News (the Canadian Broadcasting Corporation), to put together a comprehensive guide on writing about mental health. Mindset - Reporting on Mental Health was compiled to help Canadian journalists navigate the waters of reporting on mental illness. The English version was launched last week, April 24, and is now available for download.

While it was written for Canadian journalists, there is no reason why English-speaking writers and journalists from around the world can't use the guide. It addresses issues about how not all mental illness can be put into one category, how the majority of people with mental illnesses don't commit crimes, interviewing techniques, and mental illness and the law - among other things.

It's an interesting read for students who will be working in social fields, such as psychology, teaching, policing, social work, law, and so many other professions. It's also interesting for the general public, because it gives some context to the issue of mental illness and how we talk about it. 

Think about it - how do you talk about mental illness? I know that I learned quite a bit from just browsing the document. 

Yes, vaccines do save lives

I encourage vaccinations. My three children received all recommended vaccinations. As an adult, I have received all recommended vaccinations and I try to keep them up-to-date. I did so and I continue to do so because they save lives. I refuse to watch or listen to celebrity moms who have become "experts" on any health issues, particularly the anti-vax celebrity moms.

When my children were young in the late 80s and early 90s, before anti-vax publicity really took hold, I remember saying to my husband that there was going to be trouble. While he and I remember what it was like to know children who did get the childhood diseases - or we got them ourselves - the fully vaccinated generation was heading into parenthood and they would probably not have seen the devastation that these diseases can cause.

It's unlikely that they'll meet a person who is hearing impaired or completely deaf because his or her mother was exposed to rubella (German measles) when she was pregnant with that child. It's unlikely that they know of children who were severely affected by the so-called "harmless" childhood illnesses. It's unlikely they know of someone who has lost a sibling or child to a preventable illness. And as such, many have no clue as to the damage these illnesses can actually do. I had mumps when I was a child. It was awful. I got through it without any lasting effects, but the boy I passed the mumps on to was not that lucky. He developed serious and painful complications that could have been avoided. My children all had the chicken pox when my five-year-old brought them home from kindergarten and then passed them to my three-year-old and one-year-old. The vaccine wasn't available yet. They were miserable and one was particularly ill. Why would anyone wish that on their child?

Autism is not something you want for your child. But with all the mounting evidence that the vaccines do not cause it, you would think that this myth would die down instead of keep growing. Are vaccines fool proof? No, they're not - and they don't claim to be. Some people who are vaccinated still may become ill, but often it is not as severe as it may have been otherwise. Do people have side effects? Yes, there are a few people who do experience side effects. But the number of lives saved by vaccines far, far, far outnumbers those who are affected by side effects.

I read of a pediatrician who does not recommend vaccines because she said it interferes with nature. Really? But then so does removing a ruptured appendix or a tumor. In vitro fertilization, pulling teeth, taking antibiotics - those are all "interfering with nature" if you're going to follow this physician's way of thinking.

I attended a health journalist conference in March, where the key note speaker, a physician, told us of a toddler in his ICU who was admitted just the week before. This toddler had not been vaccinated for childhood diseases. The parents rushed their child to the emergency room because she caught one of the "harmless childhood disease viruses." The child was saved, but was so brain damaged that she will likely never wake up.

Vaccinations are not a government plot to control everyone. They are not a pharmaceutical plot to make money (if so, they'd make you take more than one or two doses in your lifetime). They are lifesaving tools that aren't perfect. But they are what we have right now.

May is Huntington's disease awareness month - Have you heard of Huntington's disease?

Have you ever heard of Huntington's disease (HD)? Perhaps you may know it by its earlier name, Huntington's chorea. It's a brain disease that can strike at any age, but most commonly shows signs during the middle-age years. It affects both men and women equally, but it is a genetic disorder passed from parent to child, so for someone to have the disease, one parent must have a dominant HD gene. There are about 300,000 people in the U.S. who have HD. I couldn't find statistics for Canada, but they are very likely proportionally the same as in the U.S.

The disease is a progressive one, with no cure. For some people, the symptoms start slowly, for others more quickly. Unless you know you have your parents have the gene, HD isn't usually the first illness that a doctor would think of if you start complaining of memory loss and confusion, difficulty coping in new situations, some muscle twitching, fidgeting, or clumsiness.

Eventually the symptoms become stronger and begin to interfere with daily activities. The jerking motions and involuntary movements make it difficult to perform even simple tasks, and falls may be common. As the symptoms continue to worsen, it becomes impossible for someone with HD to care for him or herself.

The Huntington's Disease Society of America website has a booklet - a Family Guide - that discusses the symptoms of HD, living with HD, testing for HD, and the search for a cure. The site also offers information on how to get help and ongoing research. For Canadians, the Huntington Society of Canada offers several tip sheets and also provides a good bit of information on HD and on how to find help. These sites are good places to go to learn more about HD.

I personally don't know too much about Huntington's disease, but an online friend who I met several years ago has it. I've been following her journey over the past few years and it made me realize how little most people know about it. So I hope this post has helped raise a bit of awareness about this little known and little understood disease.

Medicinal marijuana helpful in treating symptoms of certain diseases - journal review

Marijuana use is a contentious subject and arguments still abound when it comes to whether it should be allowed for use as a medication to help relieve symptoms of certain diseases and conditions.

As a nurse who has given heavy-duty opiates (narcotics) to patients in need, I cannot understand the pushback against allowing marijuana for medicinal purposes. Anecdotal evidence (information provided by people who are using marijuana) shows that it is helpful for many people, particularly those with cancer or AIDS, who may experience nausea and lack of appetite. More and more, studies are backing this up. Other studies are backing up marijuana's benefit for neurological diseases as well. A review published in the April 29 issue of the medical journal, Neurology, is the latest to say that medicinal marijuana may be helpful in managing some neurologic disease symptoms. The review looked at findings of 34 studies that met certain criteria.

According to a release published by the American Academy of Neurology (AAN), "certain forms of medical marijuana can help treat some symptoms of multiple sclerosis (MS), but do not appear to be helpful in treating drug-induced (levodopa) movements in Parkinson's disease. Not enough evidence was was found to show if medical marijuana is helpful in treating motor problems in Huntington's disease, tics in Tourette syndrome, cervical dystonia, and seizures in epilepsy."

The "certain forms of medical marijuana" means via oral spray or in pill form.

According to the journal article, people with MS who use marijuana may get relief from pain caused by muscle spasms, as well as relief from burning and numb sensations. Marijuana may also help relieve the discomfort of an overactive bladder - another problem associated with MS.

In 2012, a study published in the Journal of Neurology, Neurosurgery, and Psychiatry, found that cannabis extract (tetrahydrocannabinol) helped relieve the stiffness associated with MS. The small study (144 patients with MS and 135 controls - healthy people who did not have MS) found that those who took the extract experienced relief from the muscle stiffness. A study published earlier in the year in the Canadian Medical Association Journal reported similar findings.

The newest AAN review also looked at Parkinson's disease, but did not find that marijuana helped ease the extra movements that can be caused by levadopa, the medication often given to treat Parkinson's.

As always, there are the standard warnings about the side effects of marijuana use, which include:

• Nausea
• Increased weakness
• Behavioral or mood changes
• Suicidal thoughts or hallucinations
• Dizziness and/or fainting
• Fatigue
• Feelings of intoxication

Why is marijuana still being kept from people who need it? Why are we still debating this issue? What do you think?

Sleep - What should be natural evades so many of us

The expression "sleeping like a baby" can be confusing. While it's true that babies can and do sleep very deeply, they also can wake up because of the slightest sound if it comes at the right/wrong time. How many sleep-deprived parents ended up tiptoeing around their babies after spending hours trying to get them to sleep - only to have the doorbell or phone ring moments later?

When we were children, we often fought the need for sleep. We wanted to stay up a little longer, read one more chapter, watch one more television show - anything to keep from going to bed. You never know what we might miss if we're sleeping! As teens, many of us didn't want to go to bed, but once we were in it, it could take dynamite to get us out. But then as adults, as our lives become more complex, we have more responsibilities, sleep often begins to evade us. We don't have time to go to bed when we would like, we toss and turn, and have to get up much earlier than our body would like. What went wrong?

Research into sleep and its effect on our health is ongoing and the results are interesting. In 2008, Harvard University published an article called The Hidden Cost of Insufficient Sleep. The author discusses some of the physical effects that lack of sleep can cause, such as obesity and heart disease. This really came as no surprise to many people who do live with sleep issues. This article from Norway, Insomnia can cause fibromyalgia, (2011) also discusses the issue.

Insomnia or interrupted sleep can also have an effect on our mental health. A study published in the Journal of Affective Disorders found that people who experienced insomnia had a higher risk of developing depression than did those who did not have insomnia. Another article examines the relationship between insomnia and depression: Is Chronic Insomnia a Precursor to Major Depression?

There is also, of course, a lot to be said about how certain health issues cause sleep problems. Someone with fibromyalgia, for example, may be very fatigued but unable to sleep because of pain or sensory issues. Someone who is anxious or depressed may not be able to get to sleep or stay asleep. Other conditions that cause chronic pain or even those that cause inconveniences, such as having to wake up several times a night to urinate, all cause interruptions in sleep that then means a restful sleep has not happened.

So is there hope? Sleep isn't taken seriously enough by many people but it should be. If you are having difficulty sleeping, speak to your doctor about it. Keep a journal with the number of hours you've slept, observations from your sleeping partner if you have one, and how you feel every day. Armed with this information, you may have a better discussion with your doctor or nurse practitioner about what is happening.

Sleeping pills do help many people, but there are other issues involved with medications for sleep, so if a non-medication method can be helpful, it is usually best to try those first.

Do you have trouble sleeping? If so, what do you do for it? Please leave your thoughts in the comments section and maybe we can learn from each other.

Previous posts about sleep on my blog:

• Why don't older people and some sleeping pills mix
• Time changes - more to it than the Clock Change Shuffle
• Is it time for a nap yet?