It has been a while since I have posted anything about Fibromyalgia because I have not seen any new information. I want to update you on my own state of health, and that might add something to the dialogue.
I had been feeling much better in all ways since a year or two ago, and I decided to get a second opinion on this fibromyalgia. I made an appointment to see a rheumatologist, something I had intended to do in early 2012 but was talked out of it by my new primary care physician. He said he was an expert and to cancel my appointment with the other doctor. So I did, and I have been “treated” by him ever since. His treatment focused on my pain, and he prescribed a couple of things, ending with a low dose of 100 mg of Lyrica. This made my pain subside, and I felt much better right away without any side effects. This medication can cause sleepiness, not what I want.
My doctor did not question me about other symptoms, which include sleep disturbance, fatigue, morning brain fog, and some digestive irregularity. These symptoms can be very debilitating, from just being able to function to lying in bed most of the day. Driving is out of the question when you feel like that. Due to the disabling nature of FM, it has been classified by the S.S Administration as a disability, but only for those still in their working years. I tried for disability and was denied because I am beyond that age, i.e, too old.
The rheumatologist said right away that he did not believe I have FM, that I do not fit the picture, whatever that means. After looking at my current medications, he said he thought my muscle pain is due to the statin I am taking for high cholesterol. I argued with him, saying that it had not caused muscle pain when I first began to take it, and I believed we needed to discuss the ramifications of this diagnosis. I said he would have to call my cardiologist, and he said not to worry, they have had this discussion before.
He, too, did not address all my symptoms. I brought up the topic of sleep and showed him a chart I had kept on the number of hours I slept over 18 days. It showed great variations, from nights of no sleep to nights of nine hours of sleep, and places in between. This was demonstrated on an up-and-down bar chart that I created on Excel. I averaged 6.5 hours per night. I had been taking melatonin but not at the right time of day, so he instructed me to take it earlier in the day. I subsequently bought an over the counter product that is a blend of melatonin and two other calming ingredients. I will be able to show him a more even sleep pattern with this product, called L-Theanine Serene. There are other similar products on the pharmacy shelf. I forgot to mention that my doctor’s associate, whom I most recently saw in September, prescribed Elavil, a well-known sleeping medication. I decided not to fill that but went the natural route I just described. I have not seen my PCP since that time and am waiting for my next appointment in December with the rheumatologist to discuss the results of my going off the statin, and the extensive blood work he ordered. One of the blood tests was for Lyme disease, which came back negative.
If all this sounds complicated, you are right. It is. This is not a simple set of symptoms, treatment, and outcomes. Most of this, maybe all of it, is subjective. How do you measure pain, or mental fog, or fatigue? I know when I have it, but doctors have a hard time understanding what I am talking about. Even the rheumatologist told me from the get-go that he does not actually “treat” FM patients. What? This just adds to the complications. I have to take his judgment seriously because of his credentials; he is Assistant Clinical Professor of Medicine at the Yale School of Medicine. Not too shabby. He also likes discussion and will listen to me.
My muscle pain is much less than it was a few months ago, and certainly the way it was two years ago when I first diagnosed this illness and took it to the doctor. I generally feel well most of the time, except that I still have pain, sleep disturbance, and fatigue. (I control the intestinal problems with diet and a probiotic.) I am learning, however, that half our population has sleep problems, and that is one of the things about us “elders.” So in which column do we place sleep problems – under FM or under Old Age? Perhaps a lot of this could be in that column. I only know that I never had sleep problems, or the other symptoms, until the onset of this illness. And why did this all come on suddenly, after I had been on this statin for several years? To say the pain is due to that medication seems contrary to the facts.
I have a feeling that he will place the pain in the “statin” column, and the other things with my advancing years. Another denial of this illness? But who knows – I will see him in another four weeks, and we will continue from there. For a long time I have felt that I am out there in the universe by myself, trying to find natural solutions that don’t fit with doctors’ medical solutions, or with their ignorance of this illness.
I hope these ruminations will lead to a better understanding of the nature of this illness, and for those with fibromyalgia, an insight into another’s dilemma. Thanks for listening. I would love your feedback.