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!

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.

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.

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!

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.

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.

Why are some people with fibromyalgia so angry?

Life is full of difficult days, heartache, tough times, sad moments . . . I guess that's how we know when we are having good days, euphoric moments, happy days . . .    On top of all those complicated feelings and emotions I also pick up the emotions of others.  So I can be having a perfectly good day and in some way I come in contact with someone that is spewing anger and that has a profound personal effect on me.  Don't get me wrong.  I dealt with many angry people in my career and I was very good at diffusing anger and solving problems.  But the key was that a solution was agreed upon and the anger dissapated.  I have had times in my life when I was perpetually angry.  That anger had a life of its own and fed off of itself -- it was well fed.  Then I realized that my anger, which was a necessary emotion at one point in time, no longer had any use.  It had outlived its usefulness.  The result was that I was miserable and I was probably miserable to be with too.  I thought, "Who cares if I'm walking around angry?"  I discovered the answer to that question was "me".  I was the only one that cared.  At that point I realized my anger was no longer useful and had become dysfunctional.  So I decided to give it up.  I haven't been angry like that since, and that feels very good.  As a result I'm more resilient and more at peace with my life.  When I get angry I figure out the real reason I'm angry and make sure I direct that anger appropriately.  If that anger doesn't have any real purpose, I let go of my anger.

There are people that I come into contact with when I'm in pain, fatigued, irritable . . . you get the picture.  Those people can really bug me, but if it's only about me and my state of mind, I regroup and move forward.  Doctors can be annoying simply because I don't always know what they are really thinking.  After a recent doctor visit I was talking about my problem with not being able to fall asleep and the neurologist told me to increase my dose of ropinirole for Willis-Ekbom and then she said she would see me in 2 months.  I thought to myself, "What the heck?"  So I said in a sincere tone, "Thank you for your help."  I needed time to think about this visit.  I always take the time to process events so I understand what I really think.  It's difficult to imagine everything that is going through a doctor's brain during a 10 to 15 minute visit.  And all these thoughts are traveling at the speed of light.  Anyway, I took an extra ropinirol that night and I didn't notice any difference in my sleep.  So I did this for several nights with the same result.  I thought the increased dosage in ropinirole wasn't really helping so I cut back to my former dose.  I had to laugh.  I'll be darned if I wasn't more miserable throughout the day and the night.  So I increased the dose again and I'm feeling better.  Patience.  That's something this illness has taught me.  There aren't any emergencies and yet I can feel quite impatient.  Patience is a big requirement when dealing with a chronic disease especially one that is poorly understood and one that has no specific treatment.  In addition, fibromyalgia expresses itself differently in each person so trial and error is the care plan.

I read fibromyalgia blogs and the comments on these blogs, which are frequently about how angry these people are.  That anger is directed at caregivers, doctors, pharmacists, researchers, perfect strangers . . .  I wonder why these people are really so angry.  My guess is because they are sick and don't feel well.  But who's fault is that anyway?  I haven't been able to figure out who's to blame for my misery.  I sure would like to know so I could pop them a good one.  But I can't find who's really responsible for this.  So meanwhile, I'm going to live an uncomplicated life with joy, life satisfaction, love and peace.  Since that is my M.O. I work to eliminate as much contact with angry, dissatisfied people as I can.  It really helps.  But I'm not going to quit looking for whoever is to blame for all of this so I can pop them a good one.

Willis-Ekbom Disease (restless legs syndrome) research has discovered a possible cause and defined the mechanism that impairs sleep.

Willis-Ekbom Disease (rls) is often seen in fibromyalgia, but may be present in other disease processes or be a primary disease with no relation to other pathology.  In The Journal of Sleep Disorders and Therapy, Vol.2, Issue 6, 9/15/2013 at http://dx.doi.org/10.4172/2167-0277.100139 the pathophysiology of Willis-Ekbom Disease (WED) has been theorized as an imbalance between Dopamine and Thyroid Hormone in a research article "Willis-Ekbom Disease (Restless Legs Syndrome) Pathophysiology: The Imbalance Between Dopamine and Thyroid Hormone Theory".  I would like to summarize the findings of this research.  If you would like additional information you can access this research as provided above.  This is an open access research article.

WED is a sensorimotor disorder that has both sensory and motor components.  Four features of WED need to be present in order to make the diagnosis:
1. An urge to move the legs is usually accompanied or caused by uncomfortable sensations and/or pain in the legs.
2. The urge to move or unpleasant sensations begin or worsen during periods of rest or inactivity.
3. The urge to move or unpleasant sensations are partially or totally relieved by intentionally moving the legs or body part that is affected by the unpleasant sensations.
4. The urge to move or unpleasant sensations are worse in the evening or night compared to during the day.

Supportive clinical features of WED are family history of WED, Periodic Limb Movements during Sleep, and periodic limb movements during wakefulness.  In addition, WED symptoms that improve with dopamine therapy is indicative that the patient has WED.  It has been questioned whether WED symptoms originate in the central nervous system or the peripheral nervouse system.  Applying cold packs, massaging the legs or stretching the legs relieves some of the symptoms, indicating that WED symptoms originate in the peripheral nervous system.  Medications that relieve WED symptoms do not cross the blood brain barrier, which also indicates that WED symptoms originate in the periphery.  This research was initiated by the authors due to believing the neurohormone dopamine is released in insufficient quantities to inhibit thyrotropin (thyroid hormone) resulting in excess thyroid hormone.  The increased levels of thyrotropin exceed the threshhold for stimuli perception of the somatosensory receptors located deep inside the leg, and the velocity of signals in the nervous system is also increased, which is felt as unpleasant sensations.  WED symptoms appear or worsen in the evening and at night when thyrotropin levels are increased.  Additional evidence that thyroid hormone is involved with producing WED symptoms is some of the medications used to treat WED symptoms decrease thyroid hormone.  Since research has shown that WED symptoms are worsened with an increase in thyroid hormone, it is thought that WED is actually a very mild form of thyrotoxicosis with a circadian rhythm component.

Thyroid hormone has an effect on mitochondria and the production of ATP or energy.  The mitochondria are the power house in our cells, because they produce ATP.  Thyroid hormone also enhances cognitive or thinking processes in the brain.  ATP has an excitatory mechanism that also increases alertness.  ATP is stored with other neurotransmitters such as GABA or glutamate, a fast-acting excitatory neurotransmitter.  The cascade of thyroid hormone, ATP and glutamate in the somatosensory pathways result in WED sensations and increased arousal that results in shortened sleep.  Some patients have sensations strong enough that result in painful stimuli.  "The pharmacological and therapeutic evidence highlight the importance of a strengthened neurotransmission of sensory inputs to the sensory cortex (of the brain) as the ultimate trigger of WED symptoms."  It is thought that dopamine as a neurohormone and neurotransmitter acts in the brain to contribute to WED pathophysiology due to inadequate dopamine supplies to moderate thyroid hormone.  "It is known that an enhanced tonus of the sympathetic nervous system (fight or flight system) impairs sleep.  As thyroid hormone may inhibit sleep, we believe that one of the mechanisms by which an elevated sympathetic nervous tonus system hampers sleep is through releasing thyroid hormone directly from the thyroid gland via its fibers directed to the gland."

WED is more common in patients with severe iron deficiency; your iron level should be checked by your doctor to rule out iron deficiency as a possible cause.  Supplemental iron will alleviate WED symptoms in those patients with severe iron deficiency.  It is assumed that the lack of iron impairs the balance between thyroid hormone and dopamine.  There is also a genetic influence, which is called primary WED.  It is thought that primary WED patients are born with less dopamine neurons than normal individuals so dopamine is in insufficient quantities to modulate the circadian rise in thyroid hormone.  WED can also be caused by medications that work to augment thyroid hormone.  This is a side effect of some medications.

Up to 90% of WED sufferers present with Periodic Limb Movements in Sleep, which are intermittent repetitive movements of the arms and legs during sleep.  During sleep the spinal cord continues to receive inputs and the spinal reflex is triggered causing limb movement.  Patients with Periodic Limb Movements in Sleep are thought to be more severely effected by WED.

In addition to many drugs that act to worsen the severity of WED, there are also many clinical conditions that either increase the severity of existing WED or triggers a new WED episode.  Other secondary WED episodes may be caused by pregnancy, hyperthyroidism (Grave's disease), diabetes, and chronic renal failure.

This research provides powerful arguments regarding the catalysts responsible for WED symptoms and also provides insight about the nature of the associated, circadian rhythm sleep disorder.  Managing your WED symptoms may mean getting a better night's sleep.  Blessings to you in the new year!

Highly Sensitive People (HSP) can "regulate" their strong emotions

I have noticed that when I am with a person that is aggressive, angry or sad, I have an intense personal emotional reaction that is directed inward.  In other words, I have internalized the intense emotion and it bounces around inside of me as if I am holding on to it.  It can be an uncomfortable experience if you aren't aware of what is happening and if you don't realize you can form a boundary by giving that emotion back to that person or blocking that emotion.  You may have instinctively developed your own toolchest of defenses that may or may not be effective in social situations.  One of my favorites is to withdraw and not expose myself to caustic people, but this isn't always an effective way to deal with a person's aggression or anger.  This is especially true in the workplace or in another social setting where withdrawal is either not desirable or even possible.  

Dr. Elaine Aron

Elaine Aron, M.A. in clincial psychology and Ph.D. in clinical depth psychology, has dedicated much of her life to the study of highly sensitive people.  Her Web site at www.hsperson.com includes back issues of her online newsletter that is packed full of valuable information for the HSP.  In her February 2013 Comfort Zone newsletter Dr. Aron details how to manage the intense emotions that may bombard you at unexpected moments.  The article is titled "A Few Suggestions for "Regulating" Fear, Grief, Anger and Joy".  Dr Aron intends to change her newsletter into a blog where readers can comment and interact with each other.  If you are an HSP this may be a blog of interest to follow.  Dr. Elaine Aron is the author of The Highly Sensitive Person and The Highly Sensitive Child, as well as The Highly Sensitive Person Workbook and The Highly Sensitive Person in Love, a book about how sensitivity affects our close relationships.  You will also find a self-test to determine if you are a HSP on Dr. Aron's Website.  Enjoy!!

Title change for my blog . . .

I have decided to change the title of my blog to more accurately describe how I'm feeling about my daily battle with fibromyalgia.  A storm surrounds me each day as I struggle to make sense of this illness and struggle to maintain some sort of "normal" lifestyle.  I push my symptoms to the periphery in an effort to provide a safe space for myself -- the eye of this storm called fibromyalgia.  Within that storm are the struggles to secure competent and compassionate healthcare.  As that storm rages around me I am in a tenuous position of entering that storm at any time as I try to more forward in my life.  Most days I find myself in a safe place that is just a hair away from complete disaster.  Some times I cross the fuzzy line into that storm, because I can't see where that safe eye of the storm begins and where it ends.  So I navigate this storm with a sense of caution, anxiety and pure abandon and rebellion.  Pure abandon and rebellion are my adventurous side that tends to get me into trouble!  But some times getting into trouble is exactly what I need in order to feel alive.  I embark on a new leg of this journey called fibromyalgia to become more in touch with my personal experience and expose my vulnerabilities to the world.  To authentically share your most personal thoughts creates a vulnerable space that can enter the eye of this storm.  As I read blogs that I follow and new blogs that I discover I think about the author's courage when sharing their innermost secrets.  I appreciate that authenticity in the face of the storm we share called fibromyalgia.