As I begin to type this, I'm sitting in front of my computer, feeling like I'm burning up from the inside out. The air around me is actually on the cool side but that seems to make no difference. This is just one of the lovely dichotomies that accompanies fibromyalgia. Tomorrow will mark two weeks since my fibromyalgia diagnosis and those two weeks have been full of so many thoughts, feelings, and sensations that it seemed like a good idea to have a place to document them and to chart this journey through living life with fibromyalgia.
And so, A New Normal, is born. This is my place to put down what it's like, how I feel, what I'm doing, and how I'm coping with what is my new normal. Most people who haven't experienced a chronic condition in some way or another don't really understand what it's like. So as I try to understand what living with chronic condition is all about and what it's like on a day to day basis, I thought I'd share those experiences.
Anyone who has gone through the process of trying to be diagnosed with a nebulous chronic condition, one for which there is no definitive test and for which the symptoms can change not only from day to day but from hour to hour, know how frustrating that process is. You go to the doctor because you know something is wrong. They do tests. Those tests all come back negative. You don't push it because, after all, the tests said there was nothing wrong with you. Maybe you go through a period where you feel better (or, at least, you don't feel quite as bad.) Your symptoms change again. Eventually, you go back to the doctor. There are more tests. Those tests all come back negative as well. Again, you don't push it because, after all, the tests said there was nothing wrong. At least, nothing that you didn't already know about, such as osteoarthritis.
The cycle continues. There are times that you think maybe you're just crazy. Maybe it's all in your head. After all, today's symptoms are often different than yesterday's or last week's. People suggest that you're feeling badly because of a variety of things. "We need to start eating better," says your husband. "You should get out and exercise more," says a friend. Slowly, you probably just withdraw a little bit more. You're not as visible on social media because you feel like all you do is post about how badly you're feeling. You hear through the grapevine at work how people comment and how inconsiderate you're being when you take sick days off more frequently than others do. You no longer are able to appear quite as happy and upbeat as you've always tried to be. You wonder how much you should pursue things with your doctor, not wanting to be seen as a hypochondriac when they repeatedly can't find anything wrong with you.
Those last two paragraphs sum up what things have been like for me for the past several months. Longer than that, really, but I regularly convinced myself that I was just "weird" and that it wouldn't do any good to go back to the doctor or tell them about this strange set of symptoms or that strange set of symptoms. However, things got so bad beginning in September of this year that I couldn't NOT do anything any more. I KNEW, with every fiber of my being, that there was something wrong. To be in this much pain, to be this tired, was just not normal. It was starting to negatively impact my quality of life and my being able to do things that I needed to and to be there for my family. I was missing more work than I'd ever missed before because my entire body hurt and I just couldn't *do* anything. Even worse, I felt like I was letting my son down when I had to miss a marching band field competition due to pain issues.
Luckily, I had a scheduled appointment with my doctor coming up. Even thought I'm no longer diabetic since my weight loss surgery in 2013, she still runs blood work every three months just to make sure all my numbers are remaining where they should be and everything is still going well. Over the past year, she's ordered x-rays for various body parts as I've complained of ongoing pain here and there: my hips, my lower back, my right shoulder blade area, my knee, etc. Each time, they've shown nothing but existing osteoarthritis and bone spurring caused by osteoarthritis. I told her how bad things were and how much work I'd been missing and that the pain and fatigue were affecting my quality of life. So she ordered more blood tests, this time looking specifically at things like rheumatoid factor and inflammation identifiers.
Unfortunately, those tests all came back normal as well. "It's probably just the osteoarthritis. Just keep taking the arthritis medication," the nurse told me when she called me with the results. Frankly, I wasn't sure what she meant. One of the things about having gastric bypass surgery is that you are not supposed to take any kind of anti-inflammatory medication afterwards. Which meant that I'd been off my prescription ones since before my surgery and wasn't even allowed to take ibuprofen. Tylenol was the only OTC pain reliever I was supposed to take and my doctor had drilled into me the necessity to watch even the amounts of that due to the effect it can have on your liver. I did have prescription pain medication, for when the arthritis pain was really bad or I was doing a race so I assumed that was what she meant.
I told myself I'd give it another week and see how I felt and if things were still just as bad then, I'd make yet another appointment. That week came and things didn't get any better so I called and they got me in the next day. She went over the latest blood test results with me again, telling me how everything was withing normal ranges. I told her that I was still having major issues. At this point, I had done some research and was hoping she'd give me a referral to a specialist. I couldn't remember if I'd ever told her that my mother has rheumatoid arthritis so I told her about that. I also told her that I have one sister with lupus and another sister with Reynauld's Syndrome, all of which are auto-immune disorders. Luckily, after being my doctor for 15 years and seeing me at least four times a year for the past 7 years or so, she knows me well. I will never forget her telling me, "I think I need to send you to a specialist to find out what's going on. This isn't you. We need to get to the bottom of this."
She put in the request for referral and her office called me the next week as soon as the approval for it came through. (Don't you just love insurance companies who get to decide whether or not you get to see the specialist your PCP recommends??) I called and had an appointment with the rheumatologist that same week. I remember being thrilled when I got there for my appointment and the paperwork they gave me was very brief, with none of the pages of questions asking whether you've ever had a headache or allergies before. Instead, when the doctor came in to see me, he told me he was going to ask me a number of mostly yes or no questions and proceeded to do so, allowing me to elaborate or explain anything I needed to (something those forms never seemed to allow for.) He had copies of all of the blood work my doctor had had done, had the results of the x-rays I'd had done, both of which we discussed, and he did a brief tender point exam.
And then he said words which I never thought I'd be glad to hear. But, honestly, you get to the point where you just want someone to tell you that *something* is wrong with you so that you can figure out what to do to make it better. He told me, "I'm going to order a few more blood tests, just to make sure we didn't miss anything. But I don't see the need for an MRI or more x-rays. Everything points to fibromyalgia." He explained what it was and told me that, if I was interested, there were three drugs currently approved for the treatment of fibromyalgia pain. However, since I'd had a negative reaction to Neurontin (gabapentin), which had been prescribed for neuropathy in my foot, that he wouldn't recommend Lyrica, which is closely related and works in much the same way. He recommended that I do some reading and decide if I was interested in trying either Cymbalta or Sevella before my next appointment. However, if I was interested in either of those, it would mean weaning off my current anti-depressant/anti-anxiety medication, Paxil, before I could try them because being on both is contraindicated.
I did my research and reading and have decided to start by giving Cymbalta a try. I followed an approved plan for weaning off of the Paxil and am hoping that he goes forward with giving me the prescription for the Cymbalta at today's appointment. He'll also go over the results of the additional blood work he ordered, which I had done last week. I am really hoping that I can get going on it and that it is effective. I have a 72 hour race coming up (more on that aspect and how fibro affects that in a future post) from Dec. 28-Jan.1 and would really like to be able to make my 100 mile goal a reality. Time will tell. My appointment is in two hours. I'll let you know how it goes.
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