New hope for those with Fibromyalgia and Restless Leg Syndrome

It started with a slight twinge, an ache, feeling like something was crawling on my leg, then the hot poker struck me, directly in the belly of my left calf muscle. I sky rocketed out of bed in pain, disbelief, wonderment, and fear that it would happen again. I started my usual routine of walking around my house to dissipate the discomfort that was starting to migrate down to my foot. I thought I was safe and returned to bed only to be awaken again by the stabbing pain (exactly when I was in a deep sleep – nirvana for us Fibromates) once again in my left calf muscle.

This is a typical description for restless leg syndrome (RLS) a disorder often associated with fibromyalgia. People with RLS have strange sensations in their legs, such as creeping, burning, crawling or tugging feelings. Sometimes these sensations are fairly minor, while other times, they’re painful. The sensations start when you relax, which means they can keep you from falling asleep or wake you up several times throughout the night, causing you to be exhausted and have a hard time functioning.

The research from a 2008 study shows that approximately 60% of people with FMS experience RLS. To be bestowed with both conditions provides another reason to lose sleep at night (literally from the need to frequently move your limbs throughout the night).

RLS is a neurological condition, yet the exact cause is uncertain. Although the cause of RLS is not clear experts suspect it comes from a deficiency of the neurotransmitter called “dopamine.”

Some cases may have a genetic cause, while others are believed to be related to certain diseases (like chronic kidney disease requiring dialysis), diabetes, Parkinson’s disease, hypothyroidism, deficiencies in B12 and/or folic acid and peripheral neuropathy. Many women experience RLS during their last trimester of pregnancy with full recovery of RLS symptoms after birth.

The population that experiences RLS is big enough that there are two FDA approved medications specifically for RLS and just this week, a new version of an old favorite med used by many fibromates, gabapentin or trade name, Neurontin received FDA approval for use with moderate to severe RLS.

The new approved version is Horizant Extended Release Tablets (gabapentin encarbil). This version contains gabapentin but the extended release helps the gabapentin to be absorbed in the stomach which may reduce side effects.

Are there other treatments for RLS that may be less costly in terms of not only dollars but side effects? Yes, there are homeopathic blends that are very effective at stopping RLS (speaking from personal experience).

Other ideas involve lifestyle interventions such as, moderate exercise (preferably earlier in the day), leg massages, Epsom bath soaks, using a foam roller for releasing myofascial points on the calves, avoiding too much caffeine containing foods and beverages, avoiding nicotine, and having a lower carb, high protein snack before bedtime to ward off lowered blood sugar levels (which appear to make RLS symptoms worst).

Other areas to investigate include looking at your blood ferritin level. Ferritin is how our bodiess store iron. Low ferritin levels and RLS like to hang out together. Increasing your ferritin level by doctor prescribed Iron tablets may help you find relief from RLS symptoms.

My last reappearance of RLS is likely due to my use of a night time pain reliever which contained an antihistamine. Antihistamines, frequently found in cold meds and night time pain relievers, are known to aggravate RLS.

My job now is to put this “genie” back into its bottle for hopefully another 100 years (I’d take 100 nights!). My dynamic duo of a homeopathic treatment along with pre-bedtime light yoga stretching is already working for me. Wishing you sweet dreams!

As always, thank you for taking the time to read this post and your comments are appreciated.

Posted in Nutrition, Pain, Restless Leg Syndrome, Supplements, Symptoms | Leave a comment

The key to unlock your pain

Which key will unlock your pain?

At our April support group a new member joined us who has recently been diagnosed with fibromyalgia.  As expected, she was full of questions and the group had as many answers and personal stories to share with her.

In our talk it became apparent that the fibro beast has a strong hold on her and is unleashing unrelenting pain. The group discussed the FDA approved prescriptive medications that can reduce the volume of the pain yet are not able to stop the pain altogether.

Having personally experienced the fibro “basket of symptoms” I believe there is a time for prescriptive medications. Yet, that road should be embarked upon for a short stroll and not the long haul.

The use of alternative supplements or therapies in conjunction or as a stand-alone may be the key to unlocking the pain. My experience has also shown that the sooner we find the key that unlocks the pain the quicker we will heal.  Yes, I believe that people with fibro can “heal” to a new set-point. Yes, I have even seen it happen to women who have fibromyalgia for years.

Avoiding the circle of chronic pain requires a “village” of various medical, nutrition, exercise, body work, and healing specialties along with the willingness of the person to confront the pain. Pain lies deep within our selves, beyond the superficial muscles, to being imprinted on the cells themselves. This message stays there unless it is dealt with.

The death of the cell does not end this memory since the new cells that come from the death of the old take on this memory of pain. So what is the key that can unlock your pain?

Perhaps for you, it is “meridian tapping” on acupressure points while voicing your beliefs around pain. Or it could be the use of supplements such as Curamin® with boswelia? Maybe a combination of the two will work. What about physical activity, what type, how often and for how long varies from each person and where you are in the cycle of pain.

If you are interested in discovering more about revealing what key could help you to unlock your pain, contact me TheFibroTamer@gmail.com

Thank you for taking the time to read this post … your comments are appreciated!

In peace & wishing you good health, Bonnie (aka, The Fibro Tamer)

Posted in Pain, Symptoms | Leave a comment

Fibromyalgia and Gluten Sensitivity

I was thrilled to read today’s Wall Street Journal/Health Journal article: on a review of a new study from the BMC Medicine Journal: Clues to Gluten Sensitivity. As a practicing RD for almost 30 years it vindicated what I already knew … this country is seeing an explosion of non-celiac gluten sensitivity brought on by a common environmental factor that we are all exposed to.

The study showed that gluten can set off a distinct reaction in the intestines and the immune system, even in people who don’t have celiac disease. The scientific evidence produced by these researchers will also vindicate the thousands who know they feel “off” when they eat barley, rye, kamut, spelt or wheat products.

So why are we becoming a nation beleaguered by gluten sensitivity after all these years of consuming gluten containing wheat products? One hypothesis is that the agricultural industry has appeased our appetite for high protein-low carb diets by “creating” hybrid gluten containing grains that are higher in protein. These proteins are recognized as foreign invaders by our immune system and can start a cascade of sometimes vague yet distressing symptoms.

So what does this mean for us fibromates? Symptoms of gluten sensitivity include fatigue, balance problems, tingling of hands and feet, Candida overgrowth and extended Irritable Bowel symptoms like bloating and gas.

If you think you may have an immune system that perceives gluten as the enemy, following a gluten-free diet for a few weeks is a low-risk way to trial your suspicions.

Initially, a gluten-free diet means a new way of shopping, preparing, and even seasoning your food. Plus going out to restaurants requires some “pre-dining” homework. Gluten is obvious in a slice of whole wheat bread but did you know that it can be lurking in very left-over Christmas candy canes?

If you would like to learn more about how to trial the “gluten-free lifestyle”, contact me for a complimentary strategy session at TheFibroTamer@Gmail.com. Together, we can determine if a trial of eliminating gluten from your life may be the key to alleviating or eliminating some of your symptoms.

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Detox Your Brain

Spring is the perfect time to “Detox your Brain.”March has arrived and I’m ready to “spring clean” my house. Have you ever thought about using this blossoming time of year to “spring clean” your mind?

Yes, us Fibromates often experience “cognitive difficulties” such as being unable to count out change at the supermarket; waking up in a thick aura of “fibro fog” that makes setting up our coffee machine feel like brain surgery; and when listening to someone speak, we hear them, yet we can’t fully put together the words to comprehend their thoughts and respond intelligently. So how can a Fibromate spring clean a mind that doesn’t always perform as expected?

The first step is to acknowledge that there are several factors that affect everyone’s cognitive abilities. One of these is the lack of deep, restorative sleep. Sleep deprivation is well documented as affecting our ability to make decisions, operate vehicles and machinery, perform well on tests, and follow simple commands and conversations. Disruption of sleep is often noted as one of the most frequently reported symptoms of fibromyalgia. Finding your personal “sleep hygiene” plan is a place to start.

Second, the brain of a person with fibromyalgia does look different as reported by Dr. Daniel Clauw, MD. Studies showed that a person with FMS brain when exposed to sensory sensations (i.e. heat, cold, pressure) responded and looked different than non-FMS persons. This suggests that there is a bit of “remodeling” going on upstairs (without our approval). This knowledge is our power. Knowing that the pain is “not all in our heads” can relieve the many emotions that clutter our brain; hence we start the spring cleaning process.

Thirdly, for some of us our neurotransmitters are postulated to be out of balance or we aren’t receiving the nutritional building blocks needed for the development of the “connections” so that our personal “information highway” runs smoothly. There are options to consider; such as specific nutritional supplements or when this doesn’t help, prescriptive medications.

However, we all carry in our brains or more aptly our subconscious, negative beliefs, memories or experiences that can reach “toxic” levels for our hearts, soul and bodies.

Spring is the perfect time to “detox your brain” of these emotions. Holding onto frustrations, grief, fear, and anger can manifest and be expressed throughout our bodies and prevent us from healing and moving forward.

If you would like to learn more about how you can “spring clean” your mind contact me at TheFibroTamer@Gmail.com to set up a complimentary session.

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Do you lead a fibro-protective lifestyle?

Last week we had our first support group for Scottsdale, AZ. I was surprised how many people contacted me about the group. I was more surprised how many of them are younger women. This confirms what I have heard from others that the “face or voice of fibro” is changing from the typical 50+ year old woman to a woman in her early 20’s.

I have two emotions when I speak with these young women, one of empathy as I have an idea of their experiences and one of excitement to know that they have learned at an early age that they are “fibro-prone” and can learn how to lead a “fibro-protective” lifestyle.

Yes, I believe there is power in knowing what your “beast” is (fibromyalgia) and then I believe you can learn how to live a “fibro-protective” lifestyle to keep that beast tamed.

For a “fibro neophyte” the first step in leading a fibro-protective lifestyle is to learn what fibromyalgia is and what it’s not.  Know “thy beast” in order to devise a plan of attack!

Second, identify the symptoms specific to your fibromyalgia. Next, develop a personal plan to combat your “beast” through incorporating new ways of meeting your nutrition needs; your bodies need for daily planned physical movement; learn how you can decompress your stress of everyday life; and identify the triggers that can unleash the beast again.

I wish I had “heeded” the warning signs that my beast was rearing its ugly head several decades ago. It would have directed me to get off the busy career highway and exit onto a lifestyle that would have organically developed into my own “fibro protective” life.

My message to my new young “fibromate” friends is this, reach out, connect with others with fibro either through a blog, an on-line support group or better yet, a live support group of fellow fibromates whose wish for all of us are to be emPOWERed to reclaim our lives one day at a time. Become a woman who experiences the symptoms of fibro but is not a fibromyalgia patient.

What words would you like to share with newly diagnosed women with fibromyalgia? Your comments are appreciated by all.

With gratitude for you taking the time to read this blog …

Do you desire to learn more about how to lead a “fibro-protective lifestyle?” Contact Bonnie at TheFibroTamer@Gmail.com to learn about my “fibro focus” complimentary sessions.

Posted in Self-Exploration, Support Groups | Leave a comment

First Ever – The Fibromyalgia Village

It takes a Village …

I was out running yesterday (yes, I have FMS and run) and thinking about our upcoming inaugural support group this coming Wednesday, February 16th. As the group’s “founding fibromate” one of my goals is that when people leave these meetings they leave motivated and inspired, with new ideas and experience hope and comfort in knowing they have a safe place to meet every month.

I then thought of the book written by Hillary Clinton, “It Takes a Village.” This African proverb had to do with it taking a village to raise children with the thought that the society has to be part of and foster the growth of children so that they can in turn give back to the society.

I realized that’s another one of the goals is to create a support group that is a village, a fibromyalgia village with the elder, wise ones (people who have lived with FMS for years); the village medicine man/woman (the modern day doctor or other health professional that grounds the group in science and research); the village jester (that person who knows what to say to ease our discomfort in groups and make us laugh despite our pain); the soothesayer who brings us hope for the future; the modern-day village “technophile” who searches the internet to bring us the latest news; and the members of the “village” that contribute to the group through their experiences, sorrows, celebrations, friendship and above all “support” for fellow fibromates.

If you are living in the greater Phoenix metro area, please join us as one of the “founding fibromates” for the Village of Fibromyalgia! Contact me at TheFibrotamer@Gmail.com for details.

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Does your Support Group leave you energized?

I have been thinking about writing for days now yet an opportunity entered my life and it required my energies. I met a lovely group of fellow fibromates at a presentation by the local hospital on FMS. The talk after was the desire for a support group in our area. After many calls and visits a location was secured and we will be having our first FMS support group Feb 16th. If you live near Scottsdale, AZ or are visiting us during that time, please contact me for the details. As the facilitator of the group, the vision is to have a support group that energizes you … provides hope for your future … reminds you of the possibilities that are born out of faith … connects you with others that really understand YOU and a safe place to learn, grow, and widen your circle of “fibro-friends.”

You can hear the enthusiasm in my voice as I have facilitated other types of support groups and have seen the positive effect they can have. When a person is willing to participate, be a regular attendee, leave judgments at the door and let go of any perceived expectations the potential for personal growth is palpable. Are you participating in a support group? If you are, could you share what you love about your group? Could you share what you wish your group would do more of or provide you with? Sharing is a way of caring … thank you for caring about your fellow fibromates.

In gratitude for reading this post

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Are you a fibromyalgia patient?

I started this New Year by attending a FMS support group. I was impressed by their organization and dedication; graciousness of the members for inviting me into the “fold” and the impressive line-up of monthly guest speakers.

The speaker for this month started to share her story of FMS. She had been diagnosed with FMS over 20 years ago yet does not consider herself as a “woman with FMS.”  She described herself as a woman who occasionally experiences FMS symptoms. Her ability to “tame her fibro beast” was outlined by her commitment to modify her lifestyle, recognize the importance of self-care including placing her needs before others, and development of a consistent practice of yoga. All of which have tamed her symptoms allowing her to work full time.

I related to this woman as she decided to NOT let her syndrome “define her” as a human being. I like to say that I have accepted my FMS but not surrendered to it. I am continually learning how to creatively live with Fibro through a purpose driven life of educating others about FMS. My desire to assist other with this syndrome is to share with them the hope that they too will find treatments, actions, behaviors and thought patterns that will push them beyond saying “I’m a fibromyalgia patient.”

For some of you my comments may appear harsh, maybe even judgmental. Yet, I have been in the place where I couldn’t move due to the debilitating fatigue, have my husband touch my neck without grimacing with pain, barely able to pick up a laundry basket and obtain more than 2 hours of sleep. I thought my life would be like that “forever.”  I too had to make major lifestyle changes, choices, and experiment with various treatments and modalities. I cannot say I am cured but I can say that I too am a woman who “occasionally experiences the symptoms of fibro.”

Yes, we know FMS symptoms range from a 1-10 on the various scales of pain, fatigue, sleep disorders, co-conditions, etc. yet how is it that some women who experience symptoms of a 7 or greater are able to report dramatic improvements in their symptoms?  I know what choices I made to achieve the level of everyday functioning I experience now yet I would love to hear from others.

Would you be willing to share how you have been able to nudge your “fatigue o’ meter” or other gauges of symptoms to a level that has allowed you to think of yourself as a “woman who occasionally experiences FMS symptoms?”  Who knows your comments may help a fellow “fibromate” discover how to move their “symptom meter machine” down a few notches and discover a new outlook on defining themselves.

With gratitude and appreciation for reading this blog …

Posted in Self-Exploration | 5 Comments

A new way of thinking about New Year resolutions…

Quote of the Week: “We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.”  – Edith Lovejoy Pierce

We are into day 7 of the New Year and I’ve been thinking of New Year resolutions. With my background in nutrition and fitness I’d hear from clients each year say they wanted to lose weight and “get in shape.” For a woman with FMS (fibromyalgia syndrome) resolutions such as these may seem as pipe dreams.

As with any goals, taking “baby steps” toward your global goal is step one. My global goal is to prescribe to the 3 P’s this year: Planning, Prioritizing, and Pacing. I know that if I prescribe to this platform of action my other goals (getting to bed earlier, drinking more water, practicing yoga) will find their place in my life. The “devil is in the detail” as to how I meet this goal.

The actions I take, the change in my behaviors to put these actions into motion, my level of commitment, confidence and importance I place on these steps will determine my success. Plus, an accomplice, yes, an accountability partner to keep my “feet to the fire” will help to support me when obstacles get in the way of my best intentions.

Have you thought about your “global goals?” Do you have a plan of action for the small steps to take toward these goals? Do you have an accountability partner? I’d love to hear your thoughts on making New Year resolutions as a woman with FMS.

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How do you describe fibromyalgia?

I heard my husband sharing with a family member back east that I have fibromyalgia. Then I heard him straining to explain what fibromyalgia is or how it affects me and our live. It made me stop in my tracks to realize that my own husband, a fellow health care professional, was not able to describe the symptoms of fibro and some of the treatments for fibro.

When someone has diabetes, people know that this means something is wrong with their “sugar in the blood”; or they know they either take a pill before meals or an insulin shot; understand that having diabetes leads to “foot problems” or think the person can never have a piece of chocolate again. However with fibro, the symptoms are personalized, each person will not experience each and every symptom and vary in their intensity of those experienced.

I realized that there was a gap between my husband living with a person with fibro and truly understanding the syndrome. It made me think, how many of us have spouses, sisters, brothers, other family members that know we have fibro but would be at a loss to describe it to another person.

I don’t expect my husband to spill out the complexities of fibro or know by name the medications or suggested nutrition supplements yet I realized I have some work ahead of me. The more he is educated on fibro the better he can relate to my “bad fibro days.” How about your spouse or other family members, do you think they could explain what fibromyalgia is? Your thoughts are appreciated.

Posted in Relationships | 2 Comments