Hot Topics and Readers’ Notes – 05-23-12

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CFIDS & Fibromyalgia Self-Help Video Library

Want to know what meds are available for different sleep disorders, or how to use a heart rate monitor to pace yourself during exercise? No problem! CFIDS & FM Self-Help Director Bruce Campbell has introduced a treasure trove of free “how-to” videos covering questions on 43 topics – his own voice providing information, supported by slides that outline the key points as he proceeds, so you can stop or back up whenever you want. He has even created a dedicated YouTube Channel for these videos, organized in three categories: understanding your situation, treating symptoms, and pacing.

You can see the full list and click through at the CFIDS & FM Self-help website:

Or view them on the YouTube page:


The Pregabalin (Lyrica) Fibromyalgia Sleep Study

Re: “Pregabalin (Lyrica) may support meaningful improvement in fibromyalgia sleep maintenance – Henry Ford Health study”

Note: This study reported that Lyrica reduced average waking time after sleep onset by 19 minutes and average total sleep time by 25.5 minutes – from 6.2 hours to 6.6 hours on average. Many reported some pain reduction too, while about 30% experienced dizziness, 20% daytime sleepiness, 9% headache.

Great info, thanks. It is incomprehensible to me now, but in general, the usefulness and significance is overwhelming. Thanks again and good luck.. – J

I found out this side-effect of Lyrica by chance. I have fibromyalgia and in addition, I use a CPAP at night. These two factors in tandem make for a disturbed sleep. I tried taking Lyrica 3 times a day but this made me dizzy with poor memory and cognitive ability. By trial and error I found that taking the Lyrica (150 mg) before bedtime allowed me to sleep much better. Consequently, the fibromyalgia is also much better. Thanks for bringing this to our attention! – P

The Lyrica study was way too short in duration. I teach a fatigue disorders class at a local free health information center. Nine of my students had been given Lyrica by their physicians, and eight of those people developed several serious and debilitating side effects after only a few short weeks or months on the drug. The ninth was just beginning to have some problems. In addition, the extra few minutes of sleep gained were not necessarily worth the expense and the dangers of taking this drug. This study was, in my belief, very incomplete and superficial, more designed to sell the drug than to comprehensively report on it.

Help with sleep problems can be obtained for some people by what is called “warming” – drinking warm tea, taking a warm bath or shower, using a heating pad, etc. – any time from one hour before bedtime up to being in bed (the time varies between people). Massage therapy can help also, as can several types of herbs or aromatherapy. Soft, gentle music at bedtime can also help. Drugs are often not the answer, and Lyrica, despite its temporary help with sleep, may be a danger to the patient and to the patient’s finances, especially when that patient has to struggle for months to rid himself/herself of the nasty side effects that can occur. – C


Clarissa Shepherd’s Awareness Day Inspiration

Re: “Awareness Day Tribute to Everyday Courage”

Beautiful. Clarissa always writes from her heart and her heart is a beautiful place, large, full of room for others. Thank you for sharing this. I plan on sharing it in a couple of support group settings. Very nice! – M

Thank you, Clarissa. These are the exact words my soul needed to hear! – N

Thank you for a moving piece! This beautiful tribute reads like poetry. It resonates with me and the ordinary daily courage I encounter with people with CFS/FM. Thank you, ProHealth, for letting me discover Clarissa’s work for the first time…and thank you, Clarissa, for the gift that you are to all of us. – Lisa ( – L


Oxidative Stress, Fibromyalgia Headache, and Coenzyme Q10

Re: “Oxidative stress linked to headache in fibromyalgia; CoQ10 supports important improvement”

Thanks for sharing. I am very happy to find excellent, useful information here in this article.

Heart condition. Aside from Fibromyalgia, my doctor also mentioned that CoQ10 can also help boost your heart health. This is the reason why my dad is now taking this… as his doctor recommends. He’s been taking it for 5 months now and so far, he is in good condition. But of course, I make sure he never forgets to eat a proper diet and have his daily exercise.


Combined Approach to Pain Reduction – Add Mind-Body Work!

Re: “The Assualt on Chronic Pain in FM & ME/CFS – a Combined Approach”

Wish I could have read this 12 years ago. I could have made wiser choices. Instead, doctors took me on a round of medications that are no longer effective and have caused unwanted side effects. I have now chosen to wean myself from all medications except for Tylenol and in fact take up all the advice written about in this article… – M

Add mind-body work. I Read this with interest, especially with the heading – combined approach. I was sad to see there was no holistic approach mentioned – which can go hand in hand in the medical community. Meditation, counseling, hypnosis, visualisations, EFT and mind/body therapy have all been known to help with chronic pain. The more stressed, upset, angry and frustrated the body is the more pain becomes intense. So by “re-learning” the response to pain, the body can learn how to relax, feel calmer and reduce the pain. I work with people with chronic pain, ME and CFS, and I know how difficult these conditions can make life, impact relationships, work, friendships etc. But don’t give up – help is out there and catered to every one’s financial needs.  – L


When You Want to Deliver a Meal to a Sick Friend

“Those who have a chronic illness understand just how much a meal can make a difference,” writes Lisa Copen at “It makes a difference in practical ways, like not having to cook dinner for your family that night. But it also tells someone, ‘I acknowledge your (invisible) illness. I recognize how hard it can be to just get through the day sometimes. I know how hard you are trying to do it all and not complain. Let me give you this gift.’”

To make that more fun, Lisa has designed 10 colorful labels for meals, goodies, comfort food, gift bags, etc. that you can print out free. See them here. (And for something different she suggests printing the labels out on sheets of foil or other wrapping paper).


FM Mom of the Year Essay Winners

The National Fibromyalgia & Chronic Pain Association (NFMCPA) has posted the winning entry in its international 2012 FM Mom of the Year essay contest – “Why do you think your Mom should be the Fibromyalgia MOM of the Year?” The winning essay, by Anya Pierson, established her mother – Caren Pierson – as FM MOM of the Year. The grand prize for Caren includes Goodnighties™ sleepwear and a 1-year subscription to Fibromyalgia & Chronic Pain LIFE magazine.

You can read Anya’s essay, and four other seriously wonderful essays about FM moms, at


Noninvasive tDCS Eases Migraine Deep in Brain

Researchers from the University of Michigan School of Dentistry, Harvard University and the City College of the City University of New York used a noninvasive method called transcranial direct current stimulation (tDCS) as a preventative migraine therapy on 13 patients with chronic migraine (or at least15 attacks a month). After 10 sessions, participants reported an average 37% decrease in pain intensity.

The effects were cumulative and kicked in after about four weeks of treatment, says Alexandre DaSilva, assistant professor at the U-M School of Dentistry and lead author of the study, which appears in the journal Headache. You can see an interesting video showing where the current “reached key pain processing structures deeper in the brain” (the motor cortex) – HERE.


Death of the American Pain Foundation

Suddenly last week the American Pain Foundation – a leading advocate for people living with pain, their caregivers, and healthcare providers – announced it was dissolving effective immediately. Here’s a eulogy, with links to other advocacy organizations still standing, by Dr. SB Leavitt at – “Sad News: APF Closes Down.”


Mystery Neuro-Immune Illness in San Antonio

A recent news item (“Mysterious illness links teenage girls along San Antonio’s I-10 Corridor”) reports debilitating, unexplained fatigue, nausea, dizzy spells, and stomach problems in previously healthy teens ages 12 to 19 – as well as a greater incidence in that area of auto-immune disorders. (The writer refers to a physician’s comments describing chronic fatigue syndrome as an auto-immune disorder.) The case featured in the story (real names not disclosed) involves a teen who has been ill for several years, has been told by some that it’s a psychiatric problem, and is now being examined at the Mayo Clinic. The notion seems to be that these illnesses can be traced back to an infection.


Answers to Questions About Generic Drugs

This WebMD feature (“Generic Drugs: Answers to Common Questions”) provides some useful info about generic drugs (less expensive versions of brand name drugs whose patents have expired)  – who makes them, how they’re different, why they look different, are they essentially ‘last generation’ meds, how to find any generic versions of drugs you take, and more.


UK Parents’ Forum for Kids with FM, ME, Autism, ADHD?

The European Society for ME Research & Knowledge (ESME) asks:

Is there a need for a European Parents’ FORUM for kids with ME/Fibro/Autism/ADHD? Let us know please at Then we can make one coupled at the ESME website.

Thank you – ESME (


Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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