The Fibromyalgia Perplex Comments by C.S. Choe

Ok, here we go!  This is a comment that may get this discussion/debate going in reference to C.S. Choe's comments on The Fibromyalgia Perplex (http://www.fmperplex.com/).  I have posted the part of Choe's comment that is representative of the entire comment.  If you are interested in the entire comment please request this and I will e-mail you the comment.

" I have been fascinated/angered by Fibromyalgia since finding out about it in the early 2000′s. I guess angered mostly by the fact that it is within the same class of diseases as SLE or Lupus, which I have. I also have unexplained aches and memory problems as well as suffering from a disease which can at times flare while I appear outwardly healthy. Yet at the same time, I’ve also suffered from seizures, hair loss, kidney disease, which can not be seen as just self-diagnosed or self-reported. I guess the idea that my self-reported pain, fatigue, and cognitive problems are in itself diagnosed as a separate illness just… doesn’t sit well with me. I guess I’m curious how a knowledgeable health professional may be able to differentiate Lupus from Fibromyalgia with only those symptoms. I think most times I don’t even go to an urgent care facility or see a doctor for symptoms that are termed “Fibromyalgic” because I actually don’t know what normal tiredness or pain is because I’ve had Lupus since I was 11. To imagine that people flood emergency rooms for feeling tired or “hurting all over” just seems to diminish and minimize diseases with measurable and independently assessable symptoms like Lupus."  C.S. Chloe

Firstly, C.S. Choe is consumed by his/her Lupus and is offended by any other disease encroaching on his "territory".  Since Fibromyalgia symptoms cannot be measured then it doesn't exist according to C.S. Choe.  That's an interesting logic for someone working on a PhD in psychology.  For those of you that don't know, a PhD in psychology is rich with research.  That includes the study of others' research and the research that the PhD student must do for course work.  In addition, Psychology is an interesting area of study, because symptoms are self-reported and could easily be faked.  So to me this is a paradox that doesn't make sense.  Maya Angelou made a comment about people revealing who they are.  It went something like this: When someone shows you who they are, believe them.  C.S. Choe's comments do just that.  He/she seems to be frustrated and angry that a self-reported disease like Fibromyalgia would compete with his perception that his Lupus is much more important.  My immediate reaction was anger, but then I realized that all C.S. Choe is doing is showing everyone who he is.  The fact that Choe would minimize a recognized disease and the misery that goes along with it is a testimony of how self-absorbed he is and he lacks compassion for others.  For me, my struggle with Fibromyalgia has resulted in more sensitivity, compassion, and love for all people living with a chronic illness.  I welcome any comments, because I love comments!!  Let me know what you think!

The Fibromyalgia Perplex

I have been following The Fibromyalgia Perplex, a collection of scientific and research based professionals that share and debate the topic of Fibromyalgia.  Perplex means to think logically and decisively about a topic. The Fibromyalgia Perplex blog has been visibly absent due to a "false start".  This blog is now back again and the rules for posting are quite restrictive:

About comments. We want this blog to be about research and discussions concerning fibromyalgia. To post to this blog you should be a published author, have other academic credentials, or would be welcomed as a discussant in an academic journal. We make these somewhat arbitrary rules to try to exclude the general, non-scientific public. We welcome comments by all scientists and social scientists, not just those who are physicians. This blog is moderated, meaning that the editors decide what will appear. In general, we will not censor on-topic scientific posts provided authors meet the above guidelines. If you don’t fit our guidelines and think you have something to contribute, send the editors an email at fmperplex@gmail.com. [As a modification, we will accept post from non-profesionals provided they meet certain criteria.]


The Fibromyalgia Perplex blog can actually be quite tedious for people that are not interested in research and the scientific method.  But if you are interested in "getting inside" of the heads of scientists, social scientists and researchers, then this blog is for you.  In the past, the participants have debated quite vigorously and reading about their thoughts and opinions is quite interesting and frustrating at the same time.  It is frustrating when the reader is not in agreement, but does not have the "clearance" to be able to reply and enter into the debate.

So, I put this out here for all of you to participate as observers in the sidelines.  To alleviate our frustrations, I welcome all of you to bring the debate here to my Web page so that all of us have a forum to discuss and debate the topics in discussion on The Fibromyalgia Perplex.  All I ask is that we all be respectful of each other and enter into this discussion/debate in good faith.  The url for The Fibromyalgia Perplex is http://www.fmperplex.com/  Meanwhile, enjoy the lively discussion and debate and I look forward to sharing our thoughts and experience related to this blog (The Fibromyalgia Perplex)!!  Blessings to all of you!

Nadine Burke Harris: How childhood trauma affects health across a lifetime

Run as fast as you can

When you have fibromyalgia life gets a whole lot more complicated.  But you already know that!  I'm attempting to work two home businesses and I'm feeling the strain.  I haven't blogged in awhile because I'm more than maxed.  One of my businesses is on hold as I work to ramp up my second home business.  Start up always takes extra work and quite frankly I haven't been up to the task.  Most of the work I'm doing is online, but that takes a great deal of mental activity and that's exhausting!  I'm having more generalized pain and headaches, and the night sweats have been persistent and expected nightly.  So, is this the usual whine??  Absolutely not.  It's a validation of how difficult life can be when you have a chronic illness.  Anything you try to accomplish takes its toll and the bigger the ambition and the faster you run the harder you fall.  That's just the way it is.  But I guess for most of us with fibromyalgia we keep trying to run a little harder and a little faster in an effort to challenge this disease that threatens to rob us of our life.

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!!

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.

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.

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!

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!

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.