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?

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 . . .

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!

Enthusiasm goes viral!

People are automatically drawn to high energy people that are passionate about life. That energy and passion are so "hot" that they are out front and center. These are the people that love life so much that they wear it every day as if their own life depends on it. In a way, their life does depend on it, because where is the quality of life without enthusiasm?   When enthusiasm wanes so goes joy, passion, happiness, satisfaction and life purpose. When your life purpose is lost and enthusiasm becomes a distant memory, your brain will retreat into a sad and dark place.

Have you ever watched a child at play?   They love to explore everything in their world with a great passion. It is so fun to watch their life adventures as we personally yearn for the enthusiasm of those earlier years. Children are so enthusiastic that they run wherever they go and they are living life large at full steam ahead at all times. No wonder they sleep so well!   So what happens to that enthusiastic frenzy that characterizes the waking hours of a child?

Maintaining enthusiasm and passion for life requires energy and resilience. Each year serves up challenges that test our resolve. These challenges become more intense as energy wanes with age or from a chronic illness, like fibromyalgia. As the years go by we vigilantly compile a mental scrapbook of all our life experiences and challenges. Every day our brain revisits that mental scrapbook in our conscious and subconscious mind. That scrapbook review shapes your day and your response to all the day's events. Your life scrapbook that showcases all your life experiences is a truly powerful book indeed! Your life experiences scrapbook demonstrates who you are and those pages are shared selectively with others every day. As your scrapbook's pages fill up you may get weary of keeping it up to date and decide not to add more pages. That's an indication you have decided to lose your enthusiasm. So what have you put in your scrapbook, what is the title of your scrapbook and how have you displayed your important life events?   Have you decided to use bright, eye-catching colors for those difficult days or for the valuable lessons learned?   Does the title of your scrapbook portray a life of enthusiasm and passion, or a life of defeat? 


Sid

Sid is a remarkable man.   He is an excellent example of enthusiasm for life. The only way people know that Sid survived stage 4 malignant melanoma and several years of potent chemotherapy that would have been the average person's demise, is the radical neck dissection scars he wears every day.   Sid maintained a positive life outlook and enthusiasm for life despite the doctors that told him he was going to die. That didn't discourage Sid, and his determination and enthusiasm ultimately defeated

Are you sleeping at night? PART THREE

 I know the answer to "Are you sleeping at night?"  The answer for most of us with fibromyalgia is "no".  I had an appointment with the sleep specialist yesterday to learn the results of the sleep study that was done 1 1/2 weeks ago.  The good news was that I don't have sleep apnea.  I really wasn't interested in wearing a Cpap mask every night.  The other news I received was that my sleep study was "normal".  There was no evidence of Willis-Ekbom disease, probably because I'm taking Ropinirol to treat this.  There was no evidence of alpha EEG anomaly and no periodic limb movement disorder, which is frequently a component of Willis-Ekbom disease.  As I recall that sleep study night, I had slept poorly, experienced periods of "twilight sleep", had several episodes of awakening suddenly and woke up frequently to change positions and try to get comfortable.  The sleep specialist thought I need better pain management at night, but otherwise I am sleeping fine.  The disconnect that I see is the fact that even though the sleep study demonstrates that I'm sleeping normally, that isn't my experience and the sleep I get is nonrestorative.  The sleep specialist said that I would probably benefit from seeing a psychologist for cognitive behavioral therapy to improve the anxiety I have about going to bed at night.  I explained to the sleep specialist that I have absolutely no