My last post was a rant against the fact that my doctor (an associate of my primary care physician) prescribed a sleeping medication without fully assessing my sleep or understanding that the sleep pattern for fibromyalgia patients does not fit the norm. According to what I have read on this subject, there is no medication that helps this sleep pattern, which deprives us of the deep restorative sleep that we all need every day. I can get eight hours of sleep and still feel exhausted the next day. This chronic fatigue is very disabling. I cannot make long term commitments because I don’t know how I will be on any particular day. I have cut back my church ministries for that reason and have had to cancel out on events at the last minute.
I did not fill the prescription but instead arranged for a second opinion from a rheumatologist, which is coming up in another week or so. I am looking forward to hearing what he says. And by the way, response to my last post from my readers was very high on my getting a new doctor. I don’t intend to get a new primary, but I will have that second opinion from a specialist in FM as a tool in getting better attention to detail – I hope.
I love this little Koala. Wouldn’t it be wonderful to sleep like that, oblivious to everything around us?
Meanwhile I decided to diary my hours of sleep, and I have done so for the past 18 days. This morning I put that into a spread sheet and created a chart that shows this data in visual form that is easy to read. I used to do this type of thing while I was a working girl, putting together budget information and other interesting data for my bosses. I was quite impressed with myself this morning that I could still create these charts. I was going to put it into this post, but I could not get it to paste onto the page, so you will have to use your imagination. I’ll work on it later to see if I can move it over. I will print it out for my doctor to see.
The data shows that I went from one night of *No Sleep* to two nights of *Nine Hours* and several other numbers in between. In other words, my sleep hours are all over the place, with an average of 6.3 hours a night over the 18 days. I wonder if others have the same kind of thing going on. I would love to hear from you on this. I try to do all the right things to make my room comfortable, quiet, cool, and otherwise conducive to a good night’s sleep, and to be consistent in my sleep times. I take 3 mg of melatonin before bedtime. I also try to get more exercise, as that is apparently a good thing for sleep and all other things in your life. I have a “Y” membership, and am using the reclining bike, treadmill, or the pool, depending on my mood. I have to step up the number of times per week. Sometimes I just take a walk outside, my favorite form of exercise if the weather is good. When I have a flare and feel lousy, I don’t do much of anything.
I am sure this is all very boring to many of you, but maybe this series on Sleep will be helpful to some. I just don’t want myself or others to be subjected to medication they don’t need, or to doctors who say they are experts but really are not. We have to be our own advocates and to learn as much as possible about this mysterious illness. Even the rheumatologist told me that he does not “treat” FM patients or do pain management, so I wonder how much help he will be. It’s just that this is the specialty that has aligned itself with this illness. The problem is that this specialty treats joint disease, and fibromyalgia is a disease of the muscles, not the joints (although joints can be affected, too). I read from a reliable doctor and researcher that she believes a sleep specialist is the better way to go, and I may do that. I also read from another doctor that if the sleep issue could be cured, so would fibromyalgia be cured. Other doctors say it is “in the nerves,” or words to that effect. It is considered a disease of the central nervous system and the immune system. It is probably a combination of all these, which is my lay person opinion. I also believe it can be brought on by stress. So many opinions and contradictions, and downright ignorance, make this a very difficult illness to live with.
Until next time . . .