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!