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Thursday, August 23, 2012

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
issues about the hours I sleep and the nights that I sleep poorly do not affect my mood.  I always make the best of being awake at night when I have nights like that and I don't fret about not being able to fall asleep right away.  I take every day, good or bad, in stride.  I don't believe that cognitive behavioral therapy would be beneficial.  The sleep specialist then told me that cognitive behavioral therapy takes months to make any difference at all, which appeared to be a disclaimer when there are no results from the therapy.  Needless to say, I was frustrated, disappointed and angry.  I also had an appointment with the rheumatologist and he is in agreement with me regarding the importance of sleep and this is the first priority in treating fibromyalgia.  The rheumatologist and I are partnering on improving my quality of sleep.  Our current strategy is to increase the dose of Elavil, which seems to currently be beneficial, although I am not taking a therapeutic dose yet.  I am titrating the Elavil up slowly to avoid side effects.

The reality is the medical professionals don't know much about sleep.  And that is truly the bad news for all of us that deal with fibromyalgia every day.  Doctors that aren't involved with research have a difficult time thinking outside of the box.  They are programmed to think differential diagnosis and to problem solve by thinking through the standards of care and protocols.  The doctors that are able to think outside of the box are those that are involved with research and their entire practice is influenced by their ability to be a creative thinker and problem solver.  It is interesting to talk with a research physician, because they tend to think out loud, which provides a window into how their brain works.  They partner with their patients better and have the ability to listen to their patients more intently.  Of course I am making a generalization, which will always come back to bite me!  Ha!  There are certainly exceptions to this generalization.

So getting back to fibromyalgia and sleep disturbance, this is a very real disturbance that cannot be measured by the current sleep study methods.  And so the search for answers continues.  I was hoping that I would learn something valuable from the sleep study that I could share with all of you.  I do have a good idea where the treatment dead ends are and they are numerous, but still very valuable information.  You know that Thomas Edison experienced many dead ends and valued that he had learned what didn't work.  That's how he invented the lightbulb.  All that learning takes a great deal of stamina, endurance and unrelenting faith.  Unlike Thomas Edison, there are many researchers around the world working on finding better treatments and learning the mechanism of fibromyalgia.  There are also many people involved in their care and finding solutions of their own.  There are avenues for providing the support fibromyalgia sufferers need to meet the challenges every day and that is truly wonderful.  I am a member of an online fibromyalgia forum and the people on this forum are loving, caring and supportive people that are willing to give to others when they themselves are in so much pain and misery.  It is so amazing that people struggling with their own debilitating illness have so much capacity to give to others.  These are remarkable people and I suspect if you suffer from fibromyalgia that you are one of these people too.

I am currently working on a blog post regarding sensitivity and fibromyalgia.  I have been researching the concept that people suffering with fibromyalgia are people that have a special skill set that makes them more sensitive to the world around them.  It is a fascinating concept that I believe you will relate to if you have fibromyalgia.  No matter the set backs we must continue to move forward together and continue to learn about this illness that has had such a significant impact on our lives.  There are hidden blessings and opportunities to gain insight about ourselves.  I find it ironic that one group of researchers that are learning more about mind/body connections are behavioral health professionals.  Medical healthcare professionals have typically diagnosed fibromyalgia patients with mental health disorders.  The medical community has talked about the mind/body connection for decades, but many doctors continue to separate rather than integrate mind and body.  It may be the behavioral health researchers that actually identify the mind/body connection that makes us vulnerable to developing fibromyalgia.  Sleep well and blessings to you!  The picture is my little Wills kitty in the chiminea.  He is such a gentle soul and he loves talking to me.  He always sleeps well!
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