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!