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!!

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.

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.

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?

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!

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!

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 . . .

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!

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!

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!