Sunday, April 13, 2014

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  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!
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