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Monday, November 17, 2014

Willis-Ekbom drives me out of my mind!

I have taken Requip or Ropinirol for about 3 years for Willis-Ekbom disease.  Well, that's about 2 years too long,because of a phenomenon called augmentation.  Augmentation occurs when a medication stops working and actually makes the symptoms worse.  So I'm in the process of switching over to Mirapex.  It requires that the drug is titrated up to a full dose.  Well, that restlessness is all over my body.  My arms are so bad I can hardly use them to type.  How miserable is that??  I know there are so many people that are dealing with this illness so there is so much misery that we never know about.  We just know what is happening in our own world and many days that's about all we can handle.  I know that's true for me.  I think one problem I get into is that I don't think to take my medication early enough so the Willis-Ekbom starts activating before I take the medication and then I find myself trying to catch up with it.  I should probably set an alarm to remind me so I take the medication on time.  I don't know about you, but I get tired of thinking about what I should be doing next.  That restlessness is so uncomfortable and I mentally manage it for a while and then I get to the point that I don't think I can take it another second!!  How is that for you?  Do you have the same problem managing your medication??

Meanwhile, I am also suffering with some serious nausea.  I think I have gastroparesis and will be seeing a GI doctor in one week down in Scottsdale, AZ.  I decided that I needed to go on a diet for gastroparesis to see if that would help.  Basically that's a no fat, no fiber diet.  Do you realize how many foods have either fat or fiber in them??  That eliminates most vegetables.  I just got up to take a Zofran so I can finish this post.  Just another thing to add to the misery!  So, I will let you know what the GI doctor says.  You may be having the same problem so it may help you get the medical care you need.  I can tell you why I'm so nauseated right now.  I just had two bites of chocolate cake and that did it.  Too much fat!  I really need to stop that.  To be continued . . .

Take good care and stay warm.  Winter has come to North America with a very loud roar!!

Thursday, October 16, 2014

The Number One Question: What helps make you feel better?

In all my computer travels through blogs, Facebook and Twitter people ask, "What is it that makes you feel better?"  That's a complex and loaded question.  The mind/body connection is part of what makes that question so complex.  If we start with the mind, our perception of our world makes all the difference.  Obviously the more positive the perceptions the less pain people have.  In an effort to learn more strategies to maintain positive thoughts, I have subscribed to Live Happy publication.  This
publication is chock full of good positive thinking tips and stories about what others are doing to maintain happiness and positive thoughts.  Another think I have done is join a week long Webinar on Wake Up Happy.  Some of the top positive thinkers around the world have shared their insights and strategies for living a more fullfilled and happier life.  Tomorrow is the last day of the series for this month and it was well worth joining these Webinars with a hot cup of coffee!  For more information on the Live Happy publication go to livehappy.com.  You can also learn more about the Wake Up Happy Webinars by doing a search on the Live Happy Web site.  It will help change negative thinking if you apply the principles and strategies.

So much has been written about the pros and cons of analgesic use for chronic pain.  The decision to use analgesics is a personal decision that should be made following a dialogue between you and your doctor.  Some people prefer to use alternative medicine strategies, herbal preparations, gentle yoga, meditation, and others prefer to use pharmaceutical strategies or a combination of these.  Again, this is a personal decision and you know what works better for you.  I'm not going to go into any of these strategies since there is plenty of information and opinions available in blogs and on Web sites.

Getting enough sleep is critical to feeling better.  So many people with chronic illness have difficulty getting restorative sleep.  For those people with fibromyalgia sleep apnea is frequently part of the problem.  Make sure you get evaluated for sleep apnea; it can make all the difference in the world.  Another piece of the puzzle is Willis-Ekbom Disease previously know as Restless Legs Syndrome.  Even if the restlessness you feel is more controlled, this disease can still impair sleep.  Talk with your doctor about the strategies and medications that can help you get a restful night's sleep.

Having something purposeful to do with your time is another strategy that helps to keep your mind off the symptoms that are making you miserable.  A friend of mine makes jewelry to sell so she is able to pace herself and work on her craft as she is able.  She finds a great deal of gratification making her jewelry and when she is able to make jewelry she feels better.  I have gotten involved in a skincare company that allows me to name my own hours and do as much or as little work depending on how I'm feeling.  Both me and my girlfriend can work in our jammies and that's always a plus!  So find a hobby or a job that isn't too demanding and allows for a great deal of flexibility.

There is one strategy that exceeds the power for change in how you feel over all other strategies.  That's the simple act of sharing and caring about one another.  There is nothing worse than being alone with your chronic illness and not having anyone that understands and cares.  Since people that have fibromyalgia tend to be highly sensitive people and frequently have narcissistic and abusive family members, there is no shortage of feeling alone with a debilitating chronic illness.  So all the chronic illness blogs, the tweets on Twitter, the postings on facebook and other social media have the power to make you feel better just because you have someone that cares and expresses love and support.  It's so simple for us to care about one another and there is no one that understands that better than someone with a debilitating chronic illness.  The rest of the world doesn't understand the power of caring and probably take it for granted, and they may not have their priorities established.  When you realize how it feels to be alone with a debilitating chronic illness, it gives you a different perspective.  It is easier to identify authentic and substantive priorities.  In that way, we are very fortunate and it is so good to have you all with me.  Sending love to all of you and wanting you to know that I do understand.  Blessings.

Tuesday, September 9, 2014

Invisible illness week -- no sympathy, just understanding

An invisible illness has its difficult side, because no one knows I'm sick.  But that is actually preferable.  There are people that have been burned beyond recognition and survived only to be viewed as a scary monster.  Dealing with an invisible illness and a total change in body image is a most difficult situation and I thank God I don't have that to deal with too.  So I am grateful that I don't have more challenges than I already have.  I don't seek sympathy; it's empathy and understanding that I want.  Just some understanding goes a long way toward feeling a part of something and not feeling so all alone with the burdens that I bear.  I think it's probably the same for you too.  We are all in this eye of an invisible storm that no one else can see.

Sympathy means that someone feels sorry for me . . . I sure don't need that.  And I don't need to spend time feeling sorry for myself either.  That leads to a downward spiral.  The one thing I do need is to take care of myself in ways that others may not even imagine.  I avoid negative people and their negative energy because that takes a big toll.  I listen carefully to my body, because the body rules.  If I ignore what my body wants I risk going into a total fm flare.  That's probably the hardest part, because my brain wants to rule and I have to work at holding it back.  The inability to keep up with others due to low energy is probably the hardest part for me.  I plan my activity very carefully to avoid getting into a flare, because once that starts it's hard to recover and then I miss life as it goes swiftly by.  Socialization takes so much energy and although I thorougly enjoy it, I am always totally exhausted and in pain afterwards.  But it is usually worth it!

So as we raise awareness for invisible illness, I know I'm in good company and that in itself is comforting.  I'm so sorry you are so sick, but I sure appreciate your company.  Take good care and may you find peace in each day.

Friday, August 29, 2014

Social connections when energy runs low

Most people take socializing for granted, but socializing actually requires a great deal of energy.  When chronic illness is present, energy is low and it is critical that people choose daily activities thoughtfully and with intention.  No one knows this better than someone with fibromyalgia.  Every activity throughout the day must be carefully weighed for priority and necessity.  Socializing may seem to be low in priority so it may tend to take the back burner, but that may be a mistake.  The mind/body connection cannot be dissected from one another and we need to regularly care for both to ensure our health on every level.  Depression and anxiety are common with fibromyalgia so attending to emotional health is so critical and yet it seems that we frequently neglect our brain's needs.  The brain's complexity makes this task even more difficult, because there are needs to be met on many different levels.  Top that with being a highly sensitive person and the task becomes daunting.

We are a gregarious people and social connections are critical for our emotional health and our general well being.  Connecting socially may not be possible face-to-face every day, but setting time aside for socializing is key in managing the depression and anxiety that frequently accompanies fibromyalgia.  I make it a point to connect with someone every day.  There are days when I don't have the energy to connect with others, but social media has made that easier and less energy draining than connecting face-to-face.  On facebook I have rekindled friendships with people I haven't seen in 44 years and facebook doesn't zap energy like face-to-face encounters do.  Same thing with Twitter except it's even less taxing because the messages are so brief.  I hadn't spent much time on facebook or Twitter, but I am now learning their benefits and it has been a positive experience.  I can interact with people and not feel the energy being sucked out of me.  That leaves me with energy to spare for other necessities.

Currently I have been experiencing some stressful events in my life and that naturally takes its toll on my body and tends to put me in a flare.  Bad news.  I inherently know this and have made intentional decisions regarding my emotional health, which also makes my body feel better.  That single act of intentionality saves my mind and my body from traumatic and stressful events.  This may seem to be a no brainer, but I am amazed when I see other people that don't seem to understand the critical nature of this connection between mind and body.  This is an amazing phenomenon!  The other positive element for me is that I have had fun learning new things and my brain gets exercise at the same time.  That is good for my body too!  When my brain is happy, my body is happy too.  The problem with learning new things is that it takes a great deal of energy.  But for me, it is well worth the energy it drains.  I just have to use small amounts of energy and be aware of how much I'm going to need to get through the day and not sabotage myself for the next day too.

So when you find yourself feeling lonely and blue, text a friend, meet a new friend on facebook -- just communicate with someone outside of your immediate environment.  This simple 10 minute act will change your perspective on life and re-energize your mind and body.  May you meet each day with intention, purpose, priority, understanding and awareness of the energy stores that are available to you.  Blessings!

Thursday, August 14, 2014

The Face of Fibromyalgia

The face of fibromyalgia
As years go by our experiences are reflected in the lines on our face.  There is nothing that writes with deeper lines, darker circles under the eyes and sagging skin more than the story of a chronic illness such as fibromyalgia.  With the passing of each year our face may begin to appear older than our years due to the constant struggle with chronic illness.  The miles spent in chronic pain are expressed on our face just as happy lines become predominant if our miles traveled were in a happy place.  Despite a conscious effort to overcome a chronic, debilitating illness that illness will take its toll and tell its story on our face.

My 22-year history with an injury resulting in fibromyalgia have certainly taken their toll on me and these years have been vividly expressed on my face.  So despite the fact that I have found good medical care and treatment in Prescott, AZ those miles cannot be denied.  I believed that I was overcoming this dreadful illness, but I was only deluding myself by clinging to a younger vision of myself.  Don't we all remember when we were 20 and full of energy and passion for life?  That is where many of us prefer to be stuck and then we are startled when a mirror reflects an image that isn't recognizable.  I ask, "Who is that old woman in the mirror?"  And as I turn away I again regain that image of vitality when I was in my 20's.  Those certainly were fleeting years!

Before Nerium (left) and 4 weeks after Nerium (right) - just after sweating in the garden!
Illness is not the only stressor that can be expressed on the human face.  Any stressor, physical or emotional, can etch those miles in the most unflattering way!  Am I so
vane that I am writing of such things that have little to do with the strength of my relationships and the people I love so much?  I guess that as I get older I just want some of those years back, because my work here isn't done and I have so many things I would like to accomplish that remain undone.

Before Nerium (top) and 4 weeks after Nerium (bottom)
My life journey has brought me to Nerium International and the comraderie, relationships and friendships that have been an unexpected bonus.  How fortunate am I?!  And the added bonus is that Nerium skin care age defying products have given a few years back to me that were lost.  The combination of good medical care and Nerium has turned back the clock for me so I have a second chance to live those years that I thought had been lost.  I want to share this joy with you, because you too can regain some of those lost years.

More images can be viewed on my Nerium facebook page if you use the search term Nerium AD.  It should be the first line to pop up.  If not, you can find me on facebook at this address:  https://www.facebook.com/pages/Nerium-AD/666205663456586
You can also get more information about Nerium at www.valgarner.nerium.com.  In addition, you can contact me at 949-939-5295 or add comments to my blog page.  Blessings to you as you travel this sometimes bumpy road of life!

Tuesday, August 12, 2014

Narcissists practice isolationism

People with fibromyalgia have neurological sensitivities that leave them vulnerable to toxic people and toxic environments.  When exposed to these toxins the result is an increase in stress and a fibromyalgia flare.  One of the most toxic people that anyone can come into contact with is a narcissist.  For someone with fibromyalgia, narcissists are deadly.

Narcissism is a complex disorder that is perplexing to others.  This disorder can appear quite different from one person to the next, but there is one thing they all have in common: a lack of empathy for others.  The lack of empathy for others is the hallmark feature of narcissism, which can be difficult to identify because they are so clever at disguising their narcissism.  A narcissist studies normal human behavior by observing the responses that others have in a variety of situations.  They may appear to have friends, but upon a closer look those friendships are all superficial, and enduring, close friendships are absent.  The narcissist is a wolf in sheep's clothing.

The nuclear family is traditionally the primary support system, but for a person that has narcissistic family members there is no primary support system.  This situation leads to isolation, especially for a person with fibromyalgia that may have few support systems available.  The lack of a primary support system creates stress, which results in fibromyalgia flares and a decline in health status.  If this isolated person attempts to set boundaries on the narcissistic family members' abusive behavior or limits contact with their narcissistic family, these family members in turn purposely isolate the family member even more.  Remaining in this toxic environment with toxic people takes its toll, but the isolation from family takes its toll too.  It's a catch 22 situation.

As long as a person remains in the presence of toxic, dysfunctional people, they will be unable to function on a healthy level themselves.  The person and their fibromyalgia symptoms will be minimized, ignored and demeaned.  This leads to constant turmoil and feelings of inadequacy.  In essence that person must cease to exist to serve the needs of the narcissist -- a person that always has an empty bucket to fill, but the bucket has a big hole in the bottom so the narcissist must continuously feed off others in an attempt to fill that bucket.

There is no quality of life when a narcissist is close enough to cause you harm.  But they can only cause harm if they are in your life -- don't walk; run away as fast as you can.  Your number one priority is YOU.  If  you have fibromyalgia you absolutely cannot afford to have these toxic people close to you.  There are worse things than being alone.  Adopt others into your life and find solace and support within your extended "family".  The best advice I have ever heard is "Pick your family carefully."  Blessings to you and may you find solace and joy and freedom.

Tuesday, August 5, 2014

Live happy and don't look back!

Life is a series of ups and downs, especially when a chronic illness like fibromyalgia is involved.  Despite the ups and downs, if you aren't happy then nothing else counts.  Am I right?  Happiness has the power to affect everything in our lives, even our health.  I'm not saying if you are struggling with chronic illness that it isn't a tough journey, but I am saying that happiness is tied into the mind/body connection.  If you are happy you have more life satisfaction, life satisfaction leads to better relationships, and better relationships leads to more happiness.  It's a life cycle.  Another life cycle begins with taking care of yourself and making that a priority.  If you care for yourself you feel better, and when you feel better you have a better quality of life, and when you have a better quality of life you have more life satisfaction, more longevity, better relationships, more happiness . . . you see how these cycles work?  Stagnation is a foreign concept in the cycle of life and stagnation doesn't lead to happiness.  Happiness is a dynamic state of being that ebbs and flows as you travel on your journey.

I recently was introduced to a magazine Live Happy.  That says it all.  The newest research has showed that  "when we choose to be happy and take steps toward that state of mind, our golden years are more likely to be truly golden.".  (August 2014, Live Happy, The Golden Age of Happiness, pg 82)  Research has also demonstrated that when we are in the state of happiness that we most likely will live longer too.  Amazing how that mind/body connection works.  We are truly an entity that cannot be dissected merely into body parts. 

Me and my happy little kittie Wills with the cute whiskers!
I read a number of blogs written by people with fibromyalgia.  The focus is frequently pain, brain fog, difficulties experienced in every day . . . that focus can result in a downward spiral and rob you of your life.  Despite life's challenges, and they can be many, if the focus turns to happiness, relationships,and caring for yourself and others, you will feel better.  Happiness is a key that opens many doors and leaves you with good memories.  It's a matter of focus.

This month's Live Happy publication talks about the power of words.  (Rubin, Gretchen.  August 2014, Live Happy, pg. 40)  According to Gretchen, the words we choose are critical to our happiness.  The differences in our word choice reveals how we think and who we are.  If you listen to what you say it will reveal your attitude, level of optimism, your level of empowerment, how positively you think, and your entire mindset.  Listening can be a difficult task and how often do we listen to ourselves anyway?  We should be the first person we choose to listen to!  That's how we get to know ourselves. So, is your glass half full or half empty, do you play the piano or practice piano, do you exercise or take a dance class . . . ?  You get the idea.  Are you a victim of circumstances or responsible for everything in your life and in charge of you?  Being in charge of you leads to total freedom and happiness.  Those words may be nuances to some, but they tell a deeper story that may be affecting life satisfaction and happiness.

Happiness doesn't mean you don't still have difficult or next to impossible days, but it sure helps me get through those days and improves my level of resiliency.  That's the cycle of our life.  Choose that cycle wisely!  Blessings to you on this fascinating journey.  To read more about happiness look for Live Happy and find positive in your relationships, at your job, and in your daily life.

Friday, August 1, 2014

One word: NERIUM and a picture that speaks a thousand words

Conquering fibromyalgia can be a tough thing to face every day, but one thing is for sure -- when I look good I feel better.  I have used Nerium for 3 weeks and I have seen remarkable results.  So this blog post is going to be short, because I'm going to let this picture tell the story about the power of Nerium AD, a revolutionary anti-aging skin care product.  The top photo is the before picture of me and the bottom photo is me after using Nerium for 3 weeks.  I'm 62 years young and I love Nerium!  I'll post more photos in the near future . . . Wow those close ups can be scary!!  To see more results from Nerium or to try the product go to www.valgarner.nerium.com

This is a close up added 8/10/14 both taken in the same light with no flash.


Taken 8/10/14 both with no flash.  Notice the change in the contour of my face.  Amazing!!

Tuesday, July 29, 2014

Embarking on a new adventure with Nerium

The last month has been so busy for me and I have had little time to write.  Since I have been on CPAP for several months my energy has been coming up and I am to the point where I actually want to be involved with something other than staying home.  I couldn't figure out what that would be so I let it go and waited to see what would come my way.  My husband needed to have an ultrasound done so the day we went to the imaging department I found myself looking for a good magazine to pass the time.  There was nothing but Sports Illustrated and Golf!!  I persistently went through the magazines hoping there was something else that may be of interest.  Sure enough there was a magazine Success from Home.  I snatched up the magazine and began going through it.  This particular issue featured the company Nerium International, a revolutionary skin care company.  I was completely intrigued with the product, which boasted an age-defying effect that would take 10 to 12 years off your face.  Oh my gosh!  This was it!!  This company was what I had been looking for and when I let go, it appeared to me.  I called the Independent Brand Partner, Angi, listed on the magazine front and she informed me that there was a Real Results Party the next evening.  So I went.  The positive energy in the room was unbelieveable and I met a large group of fabulous women and men.  So I signed up to be an Independent Brand Partner.  It has been so fun to be part of a company that offers me complete flexibility and the ability to make some extra money that could turn into some serious money.  I feel better, I am more hopeful and my energy continues to rise.  Who would ever think a magazine could have so much power to change lives??  The corporate culture is to give back and serve others.  The mission statement??  To make people better.  So as a retired RN I am back to serving others and helping people be the best they can be.

Meanwhile, I have used the day cream and night cream for 3 weeks and I have seen remarkable results.  Amazing!  So off I go on another life adventure.  I hope every day is an adventure for you.  Don't give up on yourself and fibromyalgias tenacious hold on you.  You can minimize the effects of this illness and get your life back one more time.  Blessings to you!!

Tuesday, June 24, 2014

Hope isn't a passive phenomenon . . . Make hope happen!

Image from ShaneLopez.com
Life isn't a spectator sport.  If you really want to live life you must immerse yourself totally in the experience.  In all lives there are ups and there are downs.  The most devastating "down" is the experience of chronic, debilitating illness.  But chronic illness doesn't mean the end of life, but the beginning of a new chapter in life.  After the initial grieving and that feeling of hopelessness begins to subside, take your life reins back and start directing your life plan again.  Just because "life is what happens while we are planning" we don't have to succumb to life's setbacks.  That's just to let us know we are still alive!  With every setback there are opportunities that present themselves.  They may be difficult to identify at first, but if you look closely enough they are there.

Image from Amazon.com
Shane J. Lopez, Ph.D. is a leading researcher on hope and he seeks to make hope less elusive for all of us.  "Making Hope Happen:  Create the Future You Want for Yourself and Others" is his book, which focuses on the possibilities and not the obstacles.  His prescription for success is to start small and grow hope big by creating a vision for the future.  Creating a vision for the future excites the mind and minimizes anxieties. (Lopez, Shane J.  "Five Years Ago and Five Years From Now", Success from Home,  Vol 10, No 6, pg 74-75.)  It's all about moving forward and not looking back.  That's a good practice for all of us in our everyday lives.  Spending too much time on reminiscing and hoping life was different from our current experience and reality is counterproductive and self-defeating.  Self-sabbotage just doesn't make sense, but first we must recognize when we are demonstrating self-defeating behaviors and that's the hard part.

The first step is to be honest with ourselves . . . if we can't be honest with ourselves who can we be honest with??  Give up denial, rationalization, and victimization and put yourself back in the driver's seat.  That alone will give you more hope and limit self-defeating behaviors.  Again, start small.  I tend to self-defeat by eating the wrong foods and not adhering to smaller meals for the gastroparesis that tries to be my "boss" every day.  So instead of me being in control I allow my gut to boss me around throughout the day.  That doesn't make sense to me, but I do it anyway.  Then I feel terrible, which results in a downward spiral.  Not a good thing!  So I must take control back and gain my freedom again.  That's just one example of how easy it is to self-sabbotage our own lives.  So, move forward and be free again.  That's real freedom and liberation, which is what we all are searching for.

Sunday, May 11, 2014

Regaining control of your life when chronic illness dominates your day

Chronic debilitating illness is an insidious, demanding foe that seeks to rob us of everything in our lives.  It seeks to destroy relationships, careers, life plans, hopes and dreams . . . our entire world can be lost in its clutch.  I'm sure this isn't news to you.  As the life losses mount so do the grief, depression and anxiety.  Some days may feel like a downward spiral into a bottomless pit.  Maintaining a sense of your former self may seem impossible.  As that chronic illness gains an ever tighter hold on you, your sense of identity may wane as you begin to identify more and more with an illness that attempts to dominate your life.

There is one way to beat chronic illness so it doesn't rob you of your life: refuse to be its victim.  That's a tough concept to digest, especially when chronic illness persistently makes each day so difficult and miserable.  Giving up all your dreams and life goals automatically puts you in a victim role.  When you say "I can't because I have fibromyalgia", you just put fibromyalgia in charge of your life.  If you say you can't do something because your partner won't let you, you just put your partner in charge of your life.  Viewing yourself as a victim of anything prevents you from enjoying every moment of your life and steals the joy of accomplishment.

Perceiving yourself as a victim is more debilitating than any chronic illness, because it is so pervasive in every facet of your life.  Feeling like a victim paralyzes you and prevents you from moving forward.  Victimization leads to feelings of helplessness, hopelessness, anxiety and depression.  In addition victimization keeps you stuck in the muck and quagmire, and the tendency is to focus on how bad life is because someone or something did "it" to you.  When you blame someone or something for how bad your life is, you are sabbotaging yourself.  I'm not talking about taking on so much that it has a negative impact on your health.  But if you have a dream or a life goal, don't give up on it.  That's the kind of stuff that keeps us feeling alive.  If you want a college degree, figure out how to get it done . . . excuses and blaming your illness, your spouse or anything else doesn't get it done.  All that does is take hope away and get you deeper in the muck.  Don't be afraid to set goals.  If you don't quite meet your goal, you can reset the goal line.  And you don't have to go after every goal at the same time.  Pace yourself so you can accomplish what you want without putting your health in jeopardy.

It takes a true warrior, lots of persistence, a whole bunch of patience, loads of fortitude and great courage to get where you want to go.  When you tackle your favorite life goal, do it with enthusiasm and take responsibility for everything in your life.  It will set you free and make you smile too.

Wednesday, April 30, 2014

Are you sleeping at night?

I asked this question almost a year and a half ago and the resounding reply was "absolutely not!"  The first priority for someone with fibromyalgia is to get a good night's sleep, but for many this is a lofty goal that remains out of reach.  I know the despair of energy depletion and amplified pain, irritability, and the difficulty of coping with the numerous fibromyalgia symptoms due to unrestorative sleep.  Well, after not having slept for almost 22 years I am finally getting a good night's sleep and I feel so much better.  My CPAP machine is a miracle for me and I am actually getting a good night's sleep every night.  Amazing.  All it took to get a good night's sleep was an astute Pulmonologist that listened to me and believed in me.  Many times people with fibromyalgia don't find a doctor that will really listen and trust that the patient is telling the truth.  If that is you, don't give up.  If you have a doctor that won't listen to you, get a different doctor.  Many doctors tend to treat the symptom and not the real problem, such as prescribing Ritalin in an attempt to increase energy.  But the lack of energy is not the real problem; it is a symptom of unrestorative sleep.

I want to reiterate that 80% of fibromyalgia patients have sleep apnea.  If you aren't sleeping, go see a sleep specialist.  A sleep study may not demonstrate a sleep problem if you don't sleep well during the study.  I believe that's what happened to me during my first sleep study.  If you had a sleep study that didn't demonstrate a sleep problem, but if you aren't sleeping, go see a different sleep specialist.  The doctor that diagnosed me with sleep apnea is a Pulmonologist with specialties in sleep disorders, critical care and internal medicine.

I still have fibromyalgia and Willis-Ekbom Disease (rls), but normalizing my circadian rhythm has done wonders for my quality of life.  And if you don't have quality of life, what else is there?

Thursday, April 24, 2014

A CPAP adventure and the unfortunate "fallout"

My CPAP machine
I am just completing my first week on CPAP (continuous positive airway pressure) and I am surprised at how easy it was to become comfortable with the equipment.  I believe a positive, "can do" attitude has a major influence with readily adapting to change.  I was determined to make CPAP work for me and so it has.  Albert Einstein said "If you believe you can, or if you believe you can't, you're probably right."  My determination has paid off and I am sleeping through the night and feel more refreshed in the morning.  That's the best news I have had in a month.  The CPAP machine is so quiet and the mask is as comfortable as possible so those things really help too.

I also saw a cardiologist this week to find out how sleep apnea has affected my heart.  The cardiologist informed me that people with sleep apnea can have a blood pressure spike as high as 300 mm Hg during an apneic episode.  A person's blood pressure can be low throughout the day, but sleep apnea events can cause the blood pressure to spike up anyway.  The repeated spikes in blood pressure cause damage to the cardiovascular system and can result in a heart attack or a stroke.  So it doesn't matter if blood pressure is well controlled throughout the day; if you have sleep apnea you are at risk.  My echocardiogram and EKG show three heart blocks in the fibers that spread the heart's electrical charge in the lower chambers of the heart and I have some stiffening of the heart, but no thickening of the heart muscle at this point.  In other words, I have diastolic heart failure although it is mild.  I guess I won't be running laps around the house like my hair is on fire any time soon!  The treatment for the cardiac changes is CPAP so I'm on the right track.  Even though the news is mixed it is all good news.  A piece of the fibromyalgia puzzle has been put into place.  If I know what is happening with my health then I'm able to do something about that health problem.

The funny part about all of these health problems that I am unearthing with the help of some remarkable medical doctors is the fact that I "don't look sick".  No one would ever guess in a million years that I am struggling to regain my health or at least, prevent my health from deteriorating.  When I think about it, I really don't want to look sick.  Who wants to look sick and what would be the purpose in that anyway?  Possibly some secondary gain of extra attention or extra consideration.  My personal goal is to be the best I can be with what I have to work with.  That helps me to avoid that victim mentality and to focus on life rather than my eventual demise.  I think it's important to live each day no matter what that day may bring and those daily challenges just remind me that I'm still alive.  Embrace each day, because despite the trials and tribulations, each day is truly a gift.  Blessings to you today, tomorrow and always!

Sunday, April 13, 2014

A sleep disorders guide . . .

My sleep disorder saga is on a slow and bumpy course.  I had a second sleep study using CPAP and now have a referral to home care to get my equipment set up.  I had to laugh when I found out that I had a home care referral . . . I must be getting old!  So I am hoping to hear from home care this week and start getting used to using a mask at bedtime.  I am determined to make this work and improve my sleep quality in the process.

I have had mysterious episodes of sudden arm weakness as if the blood was draining from my arms.  This only happens occasionally and lasts from 1 to 5 minutes.  I have had this happen several times in one day.  After a great deal of searching for answers I have discovered that this is cataplexy, which is related to narcolepsy.  I have not had narcolepsy episodes thankfully.  Cataplexy can be quite frightening for people and can affect many parts of the body including the legs.  When the legs are involved it can result in collapse if the person is standing.  So this mystery has been solved.  I feel so much better just knowing what causes these episodes.

Today I was doing some reading on sleep disorders and found a valuable comprehensive guide to sleep disorders that you may find to be valuable as well.  The Web site is sleepdisordersguide.com.  This site even includes a section on fibromyalgia, which I thought was useful too.  Sleep disorders are common with fibromyalgia and you owe it to yourself to see a sleep specialist to help diagnose your particular sleep problem.  Since fibromyalgia is a neurological condition it is no wonder that sleep is impaired since sleep is a complex neurological process.  If you don't get any answers from one sleep specialist, go see another sleep specialist.  I didn't get any answers during my first sleep study, which was a humiliating experience for me.  Come to find out it wasn't about me, it was about their incompetence.  I have found it to be quite helpful to have a doctor that is both a pulmonologist and a sleep specialist since I have recently been diagnosed with asthma.

Having a diagnosis of fibromyalgia is a tough diagnosis, because there are so few therapies that can really improve quality of life.  Without quality of life, what else is there?  I have always been a person that has a desire to keep moving forward and avoid getting stuck in the quagmire.  But fibromyalgia has certainly been the greatest challenge of my life.  Despite the difficulties that fibromyalgia poses, I have still been determined to move forward, but there is no way to do that alone.  I needed a caring, compassionate and helpful team of healthcare providers on my side to help see me through this.  It only took me 20 years to find this team, but I have finally arrived.  It takes a whole team of doctors, because where one lacks expertise, the other may fill that void in knowledge.  I am the captain of this team and I work to bring it all together, which helps me to know what the next steps are.  There is no magic remedy for fibromyalgia, but armed with information, emotional support and a big dose of perseverence we can have a better quality of life and more every day happiness.  Blessings to you and your journey!

Wednesday, March 19, 2014

Sleep Study Results: the continuing saga "in search of restorative sleep"

About a year and a half ago I had a sleep study done.  It was a grueling and painful experience that I never wanted to repeat.  The results of that study:  completely normal.  I was told there was nothing wrong with my sleep so my question was "Why isn't that my experience?"  What I have learned is that not all sleep studies are equal.  I recently had another sleep study done and the experience wasn't nearly as bad or as painful.  The electrodes on my head were more comfortable and the staff were warm, friendly and professional.  What a difference from one sleep lab to another.  My health insurance didn't want to approve my second sleep study so I filed a grievance and spoke with representatives at the insurance company several times.  When I'm not getting anywhere with staff I always ask to speak to their manager.  I presented compelling facts that convinced the insurance company that further delay was only going to add to the cost of my healthcare for them and me too.  The sleep study was approved, but their reluctance did result in a delay in my care.

In follow up after the sleep study and a pulmonary function test for my complaint of shortness of breath, I learned that I do have sleep apnea and I also have asthma.  I know when the asthma started . . . it was 11 years ago and I'm just being diagnosed.  I know that I have had sleep apnea for years, especially since there are subtle changes in my heart due to the physiological
stress from untreated sleep apnea.  This is an important point for everyone with a diagnosis of fibromyalgia.  Fibromyalgia has so many associated symptoms that patient complaints are ignored resulting in a lack of care.  If a doctor ignores your symptoms, go see another doctor.  I was fortunate to have seen a very good neurologist that referred me to a pulmonologist.  This pulmonologist is an astute healthcare professional that relies on his own intuitive sense.  My move to Arizona has been a good one, because I have found compassionate, competent healthcare professionals.  Without this move I would continue to have untreated health issues.

My next step is a stress echocardiogram and Cpap titration for my sleep apnea.  Just maybe I am going to finally get a good night's sleep.  I'll let you all know how this works out.  Meanwhile, nighty night and sleep tight.  Good night.  Don't ever give up . . .

Tuesday, March 11, 2014

Psychobiotics and the dark chocolate connection . . .

There has been a fair amount of interest regarding neurotransmitters in the medical community, but treatment for depleted neurotransmitters has remained a mystery.  Nutritional supplements have been the first line of treatment with dubious results and psychoactive medications have been prescribed for decades with little to no benefit.  Neurotransmitters are those chemical messengers in our body that modulate all the functions of our body and mind.  The table below provides a brief explanation of common neurotransmitters and their function.


It is interesting to note that many people with fibromyalgia have depleted neurotransmitters, which may be responsible for some of the symptoms that decrease quality of life.  But renewed hope may be just around the corner.

It seems that the human body is teeming with beneficial microbes that are critical for our physical and emotional health.  There are approximately 15 trillion cells in our bodies and 100 trillion bacteria.  Amazing, huh?  These bacteria are essential to digestion, metabolism, immunity and our psychological health, and that's just the tip of the iceberg.  These bacteria act as messengers that orchestrate our body's function and wellbeing.  So the question is "How do we ensure these essential and beneficial bacteria remain healthy and functioning properly?"  As it turns out, probiotics rarely make it past our stomach and its acid environment.  According to Davidson in "The Psychobiotic Revolution" (Davidson, Jordan.  Psychology Today, April 2014, pg. 40), "It's long been known that the stress system is intimately involved in depression.  People suffering from major depression frequently have elevated levels of the hormone cortisol, released in response to stress.  In a recent study, a probiotic cocktail of Lactobacillus helveticus and Bifidobacterium longum was found to reduce cortisol levels."  In addition, "many physiological and psychological processes associated with depression can be traced to a deficiency in the neurotransmitter GABA.  Lack of GABA in the brain may bring on the negative ruminations long linked with depression."  Researchers have determined that gut microbes secrete GABA, which include Lactobacillus helveticus and Bifidobacterium longum organsisms.  It is interesting to note that dark chocolate increases numbers in both of these bacterial families.  The polyphenols in the chocolate act as a prebiotic and enhance the growth of benefical gut bacteria.  Now that's the best news I have heard in the last 20 years.  I not only drink red wine for health benefits but I am also eating 2 squares of dark chocolate every day.  The specific strain of Lactobacillus reuteri that is found in yogurt or as a supplement works to improve mood, appearance and general health by increasing levels of oxytocin.  Oxytocin is that hormone that gives you a feeling of wellbeing when you cuddle, hug, or have sex.  There are also active yogurt ingredients that reduce anxiety and fear.

We are on the cusp of gaining more knowledge regarding the best way to ensure the health of our body's microbial community that will ensure the health of our body and mind.  Meanwhile, I intend to eat Greek yogurt and dark chocolate every day so my microbes don't go hungry.  Blessings to you and your microbes; may you live happily ever after!

Saturday, February 8, 2014

Sleep apnea is commonly seen in fibromyalgia

If you are like me, you are spending a fair amount of time in denial.  I just cannot believe that I'm vulnerable to illness of any sort, because I always believe that's for someone else and not me.  Now you would think that having fibromyalgia for 20 years would give me enough time to convince myself that I am vulnerable to illness.  My Dad always said I was hard headed, but the truth is we are all vulnerable and as we age that vulnerability increases.  I never thought I may have sleep apnea and have resisted this diagnosis, because I have never wanted to be on a CPAP machine.  Well, when it comes to illness we don't usually get to choose; it chooses us.  I recently had a routine EKG prior to a minor surgical procedure.  I'll be darned if that EKG didn't turn out to be abnormal, indicating possible right heart damage most likely related to years of undiagnosed sleep apnea.  It appears that the sleep specialist that I recently saw suspected this; it is in the early 60's that people are diagnosed because they present with right heart damage and lung damage (pulmonary hypertension).  I had an echocardiogram and am now waiting for the results and the news that I will now have a cardiologist too.  Not the news I want to hear.  Information about sleep apnea is included in fibromyalgia Web sites, but I selectively "deleted" that part and am now paying the price.  It gets even more complicated, because sleep apnea can be obstructive, central, or both.  Most people are familiar with obstructive sleep apnea and its notable snoring, but central sleep apnea is less common and less commonly known.  Now that I'm out of denial, I believe I have both.  This is what I have recently learned in the literature:

Sleep Apnea in Patients With Fibromyalgia: A Growing Concern

Patients with fibromyalgia have a tenfold increase in sleep-disordered breathing, including obstructive sleep apnea. Proper diagnosis and treatment will improve health and quality of life for fibromyalgia patients.
"According to a recent article, sleep and fatigue symptoms have surpassed pain as the most prominent complaints in FM patients.4 It is now known that FM patients suffer from a litany of sleep issues including nonrestorative sleep with alpha-wave intrusions, insomnia, restless leg syndrome, hypersomnia such as narcolepsy, and obstructive sleep apnea (OAS)."
"Perhaps the most common sleep problem seen in patients with FM is nonrestorative sleep. The majority of patients with FM will have alpha-wave intrusions during deep sleep. It is thought that this phenomenon contributes to sleep complaints among patients with FM. In the past, the diagnosis of alpha-wave intrusions could be very time consuming, with researchers counting the intrusions by hand over many hours. Today, diagnostic approaches, including the use of quantitative electroencephalography (qEEG), can easily demonstrate alpha-wave intrusions in deep sleep."
"More than 90% of patients with FM will have alpha-wave intrusions during their sleep and it is thought that this phenomenon contributes to pathology and complaints in patients with FM. Recent therapeutic approaches that target this phenomenon, such as the γ-aminobutyric acid (GABA)-type B agonist, sodium oxybate (Xyrem), has been shown to reduce alpha-wave intrusions, as well as improve symptoms of pain and fatigue."
"In addition to alpha-wave intrusions that may impair the restorative aspect of sleep, FM patients usually have diminishment of the overall amount of deep sleep. In the normal population, slow-wave sleep (SWS) should account for 20% to 25% of sleep, but in the FM population it is typically much less.  A normal sleep hypnogram demonstrates normal deep sleep predominantly in the first 5 hours of sleep as compared to a FM patient who does not enter deep sleep for any significant period of time and has multiple unexplained arousals."
"Patients with sleep disordered breathing (SDB) also can present with a number of complaints, including drowsiness, inability to sleep, cognitive dysfunction, fatigue, mood complaints, and decreased libido. A small case study demonstrated that treatment of SDB could improve symptoms in patients with FM.8 We also know that disruption of deep sleep in healthy individuals can predispose them to increases in pain perception and cognitive difficulties. A number of smaller trials have shown that when deprived of SWS, healthy volunteers developed pain and cognitive dysfunction similar to that seen in the FM population; findings that support the association between dysfunctional sleep and FM."
"Given the plethora of complaints common in both patients with FM and SDB, there has been new interest in ruling out SDB in patients with FM. Since we know that patients with FM can have poor quality sleep, the identification of a treatable sleep disorder such as SDB is something that can greatly benefit this patient population."
"Patients with FM and SDB have added risk factors—prescription of sedative or narcotic agents, which can cause or worsen SDB. With the airway blocked, air cannot reach the lungs and oxygen levels drop. This causes the brain to slightly wake up; this is referred to as a microarousal. These brief repeated arousals cause sleep to be nonrestorative and put stress on the heart and other organs."

Sleep Apnea

"One of the more serious SDBs is OSA. The condition is characterized by loud, frequent snoring and involves the partial or complete collapse of the airway during sleep. With OSA, muscles in the throat start to relax during sleep, which makes it more likely for the airway to collapse. An apnea is described as a cessation of airflow >10 seconds. A hypopnea is typically defined as a decrease in airflow of at least 30% associated with a decrease in oxygen saturation of >4%. Episodes can occur hundreds of times in one night. A large neck (greater than 18 inches in men or 16 inches in women), body mass index (BMI) >35 kg/m2, a retrusive jaw, or large tonsils in children can predispose patients to OSA."
"Obstructive sleep apnea can cause excessive daytime drowsiness, which can affect performance at work and quality of life. When oxygen levels drop, numerous physiologic changes occur, including elevated cortisol levels, hyperglycemia, insulin resistance, and increase in sympathetic tone with increased heart rate and blood pressure. Because of this, OSA has been linked to a number of medical conditions, including high blood pressure, stroke, heart attack, atrial fibrillation, gastroesophageal reflux, diabetes, and glaucoma. Problems controlling weight, mood and memory problems, as well as diminished libido, also are common symptoms associated with OSA."
"The incidence of moderate and severe OSA in the general population is estimated to range from 5% to 7% in men and 2% to 4% in women.10 However, in women who have been diagnosed with OSA, the incidence of FM is tenfold higher than in the normal population, indicating a profound association between SDB and FM."  (Practical Pain Management at www.practicalpainmanagement.com).  References may be accessed on the Web site.

What Is Central Sleep Apnea?

"In central sleep apnea, breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with serious illness, especially an illness in which the lower brainstem -- which controls breathing -- is affected. In infants, central sleep apnea produces pauses in breathing that can last 20 seconds."  (www.webmd.com)
On WebMD's community forum Barbara wrote:  "Has anyone else been diagnosed with Central Sleep Apnea in addition to their Fibromyalgia? Central Sleep Apnea is different that Obstructive Sleep Apnea - I can breathe in, but my brain doesn't send my lungs a signal to breath out. I do this 27 times an hour and the carbon monoxide builds up and I never ever go into REM sleep. This causes me to have night terrors, you know the scary ones when you can't move and you sware the dream is real."
Alpha EEG Anomaly
"An alarming percentage of fibromyalgia sufferers have a sleep disorder called alpha EEG anomaly. This sleep disorder may actually be a cause of fibromyalgia because so many sufferers have it. Alpha EEG anomaly affects deep sleep, preventing sufferers from getting a good night’s rest."
"Alpha EEG anomaly occurs when sudden bursts of brain activity occur during a time when the brain should be in deep sleep. These periods of intense activity are measured as alpha waves on an EEG monitor. People with alpha EEG anomaly do not have difficulty falling asleep, but once they reach deep sleep, their brains begin to act like they are awake. This leaves sufferers feeling tired and drained."  (Fibromyalgia Symptoms at http://www.fibromyalgia-symptoms.org)
Sleep Apnea
According to Fibromyalgia Symptoms at http://www.fibromyalgia-symptoms.org/, "80% of people with fibromyalgia suffer from sleep apnea, a disorder that causes momentary stoppages in breathing. Sleep apnea only occurs when a person is sleeping, but it can affect some people so badly that they actually cause themselves to wake up. Many people who suffer from sleep apnea don’t even know that they have it - usually it is a partner that notices the sufferer waking up."
"In apnea, there are gaps in breathing that can last for a few seconds or even as long as a minute. These gaps are often caused by a collapse in the airway due to snoring or being overweight. This is referred to as obstructive sleep apnea. However, there is also a much less common form of sleep apnea that appears to be caused by a defect in the central nervous system."
"Referred to as central sleep apnea, this type of apnea is caused by a miscommunication from the brain. For some reason, the brain "forgets" to tell the lungs to breathe. People suffering from this type of apnea usually remember waking up."
"Sleep apnea symptoms can affect a person’s sleep patterns. Some people with severe sleep apnea actually wake themselves up hundreds of times a night, if only for a few seconds. This prevents the body from benefiting from any restorative sleep. Sleep apnea can leave fibromyalgia sufferers feeling increasingly fatigued and even more subject to pain."  (http://www.fibromyalgia-symptoms.org)

As you can see from this literature it is quite serious to have undiagnosed and untreated sleep apnea of either kind.  Sleep apnea is the true beast that has the ability to kill us and it is beneficial not to be in denial about this.  Poor quality sleep is a critical component of fibromyalgia sufferers' search for wellness.  I have searched for answers regarding difficulty sleeping for the last 20 years and it seems I am on the cusp of getting real answers and real treatment.  Don't hesitate to see a qualified sleep specialist.  If that doctor fails to give you answers, go to a different sleep specialist.  This may be critical to your health, quality of life and your survival.  Blessings to you on this most difficult journey!

Sunday, January 26, 2014

The Sleep Mystery Theater: a continuing saga of sorts

My kitty, Wills
Sleep.  That ever elusive slumber that we all crave.  Researchers and sleep specialists don't really know why we need it, but anyone that hasn't experienced restorative sleep for a period of time can tell you that we definitely do.  The people around us can define why we need sleep, because we are spacey and cranky like a big old bear coming out of hibernation.  My cat is laying on my lap right now in the deepest slumber with paws and whiskers twitching as he acts out a scenario in a kitty dream.  This cat can sleep through just about anything, and if I move he protests loudly about the rude interruption.  But in 2 seconds he is slumbering away again.  I really envy that cat and I watch him sleep in an effort to grasp the secret to his success.

The truth is sleep is quite a complex interaction of circadian rhythm, the right balance of neurotransmitters, the correct brain waves and ritual.  I have read so many articles about how to get a good night's sleep.  The suggestions are always the same and may work for people that don't have a serious problem with insomnia.  But for those of us with a serious sleep issue these pathetic suggestions result in foul language and the heat of anger.  It is obvious the author has no understanding and they would do well to keep their suggestions to themselves.  When I read their suggestions I turn into a ranting, raving lunatic and it happens in an instant -- a clear sign that I'm a woman on the edge.

Early in my blog I wrote about my experience with a sleep specialist and the sleep study that was done.  The outcome was an exercise in futility and wondering if the doctor had actually graduated from medical school.  Maybe he was at the bottom of his class.  At this point that experience is ancient history even though I remember it as if it were yesterday.  Not that I remember yesterday at all.  Well, here I go again.  I saw a sleep specialist on Saturday.  The doctor has ordered diagnostics to rule out pulmonary and thyroid issues and then the sleep study will ensue once again.  I hate that part.  I'm sure I'll have to sleep on those painful electrodes pasted on my head again and then the next morning get my hair pulled out by the roots.  Not a thing to look forward to.  I wonder some times if all the unpleasantness is an effort to get me to shut up and quit complaining.  But no, not me.  I'll be vocal to the bitter end come thick or thin.  I received instructions to withhold alcohol for 6 hours before bedtime to help with my sleep.  For me that was actually good news . . . I'll just drink my wine earlier in the evening.  The new 5 pm is now 4 pm.  I also started taking melatonin 1/2 hour before I go to bed.  I got the liquid for quicker absorption.  Liquids are better when you have a gut that doesn't work well.  Since I just started melatonin I'm not sure if it will work or not.  I am again trying to reset my circadian rhythm so I can go to bed earlier and get up earlier.  That would be wonderful!  The doctor was convinced that he absolutely can help me so his confidence made me hopeful that there actually is a solution.  I don't want to get my hopes up too high, because I have been there before, but I don't want a self-fullfilling prophecy either.  Now that's a delicate balance.

Since sleep is such an important issue with fibromyalgia I feel compelled to share my experience in the hope it will benefit you and others that read my blog.  So tune in again in the near future for
sleep mystery theater.  I hope I find answers for my sake and yours too.  Blessings!

Friday, January 24, 2014

A gut reaction . . .

From Psychology Today, Nov 2011
Have you ever noticed the gut rules?   The gut is our second brain and from my perspective my gut demands so much attention that it is coming in first place as a brain goes.  Psychology Today published an article in November 2011 titled "Your Backup Brain" by Dan Hurley.  This article can be accessed at http://www.psychologytoday.com/articles/201110/your-backup-brain.  This article discusses the enteric nervous system being a mind-body connection that is considered to be a branch of the autonomic nervous system, which actively communicates with the brain in our head.  The gut "sends signals north to the brain that directly affect feelings of sadness or stress, even influence memory, learning, and decision-making.  It relies on, and in many cases manufactures more than 30 neurotransmitters, including serotonin, that are identical to those in the brain.  What's more, tinkering with the second brain in our gut has lately been shown to be a potent tool for achieving relief from major depression."  (Psychology Today, Nov 2011)  The gut actually affects our emotions and that's why we feed it comfort food.  Food influences our mood and behavior.  The bacteria in the gut actually communicate with the brain in our head so when we are stressed our gut influences us to eat high fat foods.  "From birth on, there is constant cross talk between gut bacteria and the brain.  During infancy, that communication plays a significant role in shaping how the brain is wired.  It affects not only anxiety but also memory, creating changes in both the amygdala, the brain's center regulator of fear, and the hippocampus, the region deep in the brain that is essential for memory and learning."  (Psychology Today, Nov 2011)  That may be where the fibro fog and other cognitive difficulties related to fibromyalgia come from.

When considering that bit of information it is no wonder we have so many issues with fibromyalgia when our gut is messed up and not functioning as it should.  No wonder the neurotransmitters are in short supply and our nutrition isn't what it should be.  Our gut has an awesome responsibility to nourish our bodies and keep us in tip top shape, so if the gut isn't working well then we aren't working well.  My gut is to the point that it rebels no matter what I put in it and it can't take too much food at one time.  My day actually revolves around taking good care of my gut.  My gut is overloaded with sensory information and it sends me signals that something isn't right and other alarms that are disporportionate to the situation at hand.  That's when my first brain takes over and serious self-talk calms the storm that is brewing.

 Fibromyalgia is such a complex disorder and that complicates treatment, because one medication to treat one symptom can interact with another medication.  For example, I take Reglan to get my gut working better, which interacts with ropinirol for the Willis-Ekbom Disease symptoms.  The two don't mix well and Reglan counteracts ropinirol so my symptoms are worsened.  Fibromyalgia isn't a simple problem to manage.

So as I fight this war, I take good care of my gut because when push comes to shove the gut rules!  I think I'll eat some comfort food tonight . . .   Blessings to you and your second brain.

Sunday, January 19, 2014

A wildfire called fibromyalgia

California wildfire near Los Angeles
California is in the worst drought conditions in 150 years.  Instead of rain the weather is sunny, in the 80's with Santa Ana winds blowing and gusting to 70 miles per hour in the southern part of the state.  As a result a wildfire burns acre after acre of timber fuel that hasn't seen fire in 40 years.  Australia is in mid-summer and wildfire burns there too.  In dry, arid regions it doesn't take much for a spark to become a wildfire that ravages the land and destroys homes.

One of 70 wildfires burning in Australia
The wildfires made me think about the insidious onset of fibromyalgia and how quickly those early symptoms turned into an illness out of control.  When did it really start?  I can trace fibromyalgia back to my 20's when random symptoms began to appear, which seemed completely unrelated.  The Restless Legs Syndrome, the IBS, unexplained exhaustion, slow recovery from exercise . . .    I wonder when that early spark was set before the fibromyalgia wildfire began that has ravaged my body and threatened to rob me of my life.  There was no doubt about when this illness became a wildfire that was completely out of control.  Symptom management has succeeded in maybe 30% containment, but what will fan the flames in the future?  That is when the fear and anxiety set in.  Will this wildfire be completely out of control again?  How long can I fight?  Do I have enough endurance?  Can I fight against depression?

I wanted to join some friends for a fun, 3-day trip to Tucson for a bead and jewelry show, but I realized that I don't have enough fortitude or physical resources to be able to do that.  I have to use the energy I have to fight this wildfire called fibromyalgia.  I feel cheated, because after all my friends that will be going without me are 10 years older than me.  So why can't I do this???!

There is one thing I do know.  If I don't stay at home and fight this fibromyalgia wildfire it will no longer be contained and then I will be facing a flare.  So it's time to regroup, get my priorities straight and be satisfied with my 30% containment.  I need to focus on what I can do and not what I can't.  After all, that is what everyone must do so I'm not alone.  Everyone has limitations in one way or another.  Hmmmmm.  I wonder what would happen if I set a backfire.  What would that look like anyway??  Maybe I should call in some firemen!  Ha!  Blessings to you as you fight this wildfire called fibromyalgia.

Friday, January 17, 2014

Feeling better with a change of focus

I have noticed that when I focus on myself too much that my symptoms are so much worse.  I think about what hurts, nausea, how tired I feel, blah, blah, blah.  It's like an old worn out saga with just a beginning and then wandering aimlessly in a frozen tundra with no end in sight.  I really don't like being there.  That's a good time to start feeling sorry for myself and then thinking about what the future holds and coming up with a blank page.  There's no end in sight and yet it's the end of my story.  It seems way too soon to come to an end.

One way that I stay connected and feel better is to focus on someone else.  The person I'm focusing on doesn't realize what a gift I have received in them.  It is my intention to help, but in the act of helping I am the one that receives the help.  I'm sure that many of you already know what I'm talking about and you probably actively pursue helping others even if it is something little just to brighten someone else's day.  Or paying it forward like paying for a cup of coffee for a person behind you in line at the cash register.

I also like to shop local and purchase goods from people in the community.  That benefits me and it benefits the shop owner and keeps the community vibrant.  That also applies to the fibromyalgia community.  Many people with fibromyalgia have few financial resources due to healthcare costs and the inability to work.  One fibromyalgia blog I follow,"Of Dreams and Tears", is written by an "ecclectic artist" and she has a shop, Season's Way Collectables, on Etsy.  She sells original paintings, prints, jewelry, knit and crochet items and dolls.  The artist's name is Shelah and her preferred subject is fantasy art.  It is quite beautiful with a romantic flair that has the ability to delight.  You can access her shop at https://www.etsy.com/shop/Seasonsway

 Each morning I start my day by thinking about what I can do for someone else.  Mornings are the toughest for me so that's a good time to distract myself.  I would love to hear what you do that makes you feel better.  Blessings to you!


Sunday, January 12, 2014

A hair loss remedy discovered accidentally

Before I talk about what I discovered I would like to begin by saying this blog is not a substitution for medical advice and I am in no way suggesting that this supplement will regrow your hair.  I am simply relating my own personal experience.

One of the most distressing things about being chronically ill was the hair loss I was experiencing.  My hair was falling out in clumps, I had very little hair on my arms and legs, and my eyelashes had become sparse and very short.  I experienced hair loss for a number of years and any time I became stressed, such as during my divorce and the subsequent long distance move from Minnesota to California, my hair loss would be alarming.  I attempted to communicate my concern with my primary care doctor, but the doctor wasn't even vaguely interested in this concern.  I tried a number of over-the-counter products, which are pricey, but none of the products that are specifically for hair loss worked.  I feared that I would soon be bald headed and have to start looking at buffing products instead!

Two years ago I was seeing a young rheumatologist that was interested in neurotransmitters and she checked my neurotransmitter levels several times.  The result of this test demonstrated that I was deficient in most neurotransmitters so the rheumatologist advised me to take a supplement produced by NeuroSciences.  This supplement was prescribed to improve my neurotransmitter levels and I was advised to take it at night, because it would help me sleep too.  The supplement consists of amino acids, which are essential nutrients.  The difference between this product and a vitamin is that these amino acids are in the form of micro nutrients, which makes it easier for the body to utilize the nutrients.  After taking this supplement for several months I noticed that my arms had more hair and there was more hair growing around my hairline.  It wasn't too long after that when I noticed that short, little clumps of hair were sticking out on the top of my head and more hair had grown on my legs too.  I also noticed that my eyelashes had become longer and a little thicker.  The only thing I had changed was adding this supplement to my medication regimen.  The doctor had prescribed two capsules at night, but since I had more hair growing where I didn't want it I started taking one capsule a day at bedtime and two capsules at bedtime on Wednesday and Saturday.  The name of the supplement is TravaCor and I purchase it online.  It usually sells for $60 for 120 capsules.  I have read that some people do notice side effects, but I didn't notice any adverse reactions.

I hypothesized that my gut issues have prevented the uptake of essential nutrients, but my body more easily uptakes the micro nutrients in TravaCor.  My hair has regrown to look like it did 20 years ago.  I don't mind paying the $60 because I have noticed a difference, which I didn't see with regular vitamins and vitamins aren't cheap either.  When I told the rheumatologist that TravaCor helped my hair regrow she looked at me blankly and then started talking about something else.  Doctors just don't seem to be interested in whether we look good or not, but losing hair is sure distressing to people -- guys included.  I would suspect that male pattern baldness would not benefit from this supplement, because this is a genetic issue and not a nutrition issue, but I could be wrong about that.  If you decide to try this supplement let me know what your experience is.  This product is not prescribed for hair growth, but for me that has been the greatest benefit.  Blessings to you!  . . . P.S. This product also helped my nails grow better and the splits disappeared too.

Saturday, January 11, 2014

Reflections on a day

As I sit here and reflect on the events of this day I am exhausted.  I haven't slept well the last few days (no big surprise there) and when I am extra exhausted I am even more in tune with the environment around me.  That's probably because I'm quieter and therefore I listen more.  I spent time with friends today and that didn't go well.  It takes so much energy to socialize and when the karma isn't good that sucks even more energy out of me.  The karma wasn't good today and I struggled to make sense of that.  I spent some time thinking about all the events of the day.  I had an unsettling feeling after departing company with these friends.  I think one issue is that these friends don't understand fibromyalgia.  It can be difficult to keep up with people that don't know what it is like to be sick with this disease.  After all "I don't look sick".  I always seem to be struggling to try to keep up, but I'm always lagging behind.  That's unbelievable when I put so much energy into this, but the result isn't good.  The result is sadness and grief.  I think that many people with fibromyalgia grieve at least a little every day.  But getting back to the bad karma . . . as I sat with my friends and listened to the conversation, there was a whole lot of bitching and gossiping going on and as a result everyone seemed a little edgy.  The tension in the air was palpable.  As I studied each face they seemed to be oblivious to the tension.  When I was asked what I had been doing the past week I explained that I had been working to get all the Christmas decorations boxed and put back on the shelves in the garage.  One woman exclaimed that it's about time I got that done since today is the 10th of the month.  Totally clueless!  I was wishing I was back home snug in my jammies watching birds, squeezing my kitty and vegging out.  Sometimes trying to socialize just isn't worth it.