Progress has been made this year in my illness with fibromyalgia, and January 1st seems like a good time to review and report on recent activity. In late October I went to a rheumatologist for a second opinion. I wanted to make sure we weren’t missing something and that I was on the right track with medication. When I first went to my new PCP two years or so ago, I had made an appointment with a specialist, but he told me to cancel that because he was an expert. I believed him, but since then I have realized that there are very few doctors who are truly experts in this multi-symptom and complicated illness.
So here I am in the midst of this specialist’s exploration to determine if I really do have fibromyalgia. He told me right away he did not think I have this, and that I don’t fit the picture. That confused me because how do you look at someone and in 30 seconds make that determination? In questioning him since that first visit, he told me that people do not usually develop this illness at my age, and that most people in his opinion just “give up.” I don’t have a personality that gives up. But he did concede that perhaps I am in that 5% who don’t fit the picture. Meanwhile, he is exploring every medical avenue at his disposal, including blood work, and temporarily adding an additional medication and eliminating another as an experiment to see if anything changes.
Polymyalgia rheumatica is an inflammatory condition causing muscle pain and stiffness, mostly in the upper torso. I don’t have its symptoms except for muscle pain. There is no known cause or cure. Polymyalgia rheumatica sometimes occurs along with giant cell arteritis, a condition that causes swelling of the arteries in your head. Symptoms include headaches and blurred vision. Doctors often prescribe prednisone, a steroid medicine, for both conditions. With treatment, polymyalgia rheumatica usually disappears in a day or two. Without treatment, it usually goes away after a year or more. (American College of Rheumatology) Other symptoms include fever, weakness and weight loss. He put me on prednisone, and all that does for me is increase my energy and my appetite. I have been eating like crazy and don’t dare get on the scales.
Statins taken for high cholesterol are known for causing muscle pain. Taking away the statin I have been on for a long time has not changed anything in terms of muscle pain. One unexpected event proved to me that yes I do have FM, and no one is going to convince me otherwise. Over Thanksgiving I was away for the entire day and overnight. At dinnertime, I did not have the Lyrica I always take at that time and postponed taking this until the next morning. I awoke at 6 am with the deep muscle pain associated only with fibromyalgia, in my chest, upper arms, and torso. I could barely move. I reached over and grabbed the Lyrica bottle, took one capsule, and within an hour the pain had gone, proving that statins have nothing to do with this pain. I already knew this because FM pain is entirely different from any other I have ever experienced. It is not like when you bump your knee against the furniture, or the pain after exercise. It comes from deep within the muscles and takes over your whole body. If you have never experienced this, it would be difficult to understand. I occasionally have flareups that last about a day, otherwise am pretty much pain free, thanks to Lyrica.
I went to the specialist to make sure we weren’t missing anything, so I don’t fault him for exploring everything. That is his job. I have another visit with him coming up in a few weeks. I can now go back to my regular doctor with the knowledge that I am on the correct pain medication and that I do have fibromyalgia. However, my experience tells me that I must personally address the other symptoms, the most distressing of which is sleep disturbance. I was prescribed Elavil, a common sleep aid drug for FM. I did not fill it because I would prefer a natural supplement if possible. I found L-Theanine, specifically Theanine Serene, a blend of natural substances including magnesium, which is known for its support of nerve and muscle function, the calming holy basil leaf extract, and GABA, a calming neurotransmitter. It is a melatonin derivative, and is intended to calm the mind and body and prepare you for sleep, not “make” you sleep. It is working well for me. I take it with or shortly after my evening meal, giving my mind and body time to relax and calm down. I had found that a big problem with my insomnia is that my brain keeps on working and I have these great conversations in my mind. Of course you can’t sleep when that is going on, and this supplement calms all that down. I sleep an average of 6 hours a night, while before this I would either not sleep at all or only two or three hours a night. I don’t know if I am getting the level four restorative sleep I need, but at least it is sleep.
Digestive disturbance is helped with diet and a probiotic. Enough said.
Brain fog and fatigue are still a problem, though not as bad as they used to be. Perhaps the improved sleep helps keep this at bay.
The most important thing is that an FM patient must take control of her own health and not rely on the physician to totally understand what is going on. The usual eight-minute office visit is not enough time to explore all these things. It is just so easy for them to prescribe something without asking all the questions or taking time to learn about this illness. When I described sleep disturbance as not allowing me the deep restorative sleep I need for the muscles to rest and repair, the associate of my PCP looked at me as though I was from another planet. She obviously had never learned this, even though she said she was an “expert.” Ha! They don’t do their homework, so we must.
I have learned that this is a journey, and we are the drivers of the vehicle. I am grateful that I feel so much better than I did two and a half years ago when I got this diagnosis. I believe I had symptoms for several years prior and did not know what they meant. Now that the illness is under control, I am both mentally and physically more comfortable. The time I took to understand the varied symptoms and treat each one separately has been well worth the effort. I can look on the past year and see progress and know that I am doing all I can to create a healthy and comfortable life. Happy New Year everyone!
For more information on my fibromyalgia journey, please check out the other posts on this site, all beginning with the word Fibromyalgia.