Your shoulders and knees are throbbing with pain, so intense you can’t even cover up with a sheet, but there’s no explanation as to where the pain is coming from. The only thing the doctor can tell you is that it isn’t originating from your shoulders or your knees. Well, thanks a lot doc. Another doctor, a different doctor, tells you it’s all in your head. “We’ve conducted test after test, and we just can’t find anything wrong with you. It must be psychological. Here’s the number for…” You’ve heard it all before, and it’s getting rather monotonous.
Let me tell you something. You are not crazy. Your pain is real, no matter what anyone else says.
The first step of diagnosing Fibromyalgia, (FMS), is to rule out every other illness on the face of the planet, everything from the flu to Lupus. Yes, this can take months, even years. But you can’t give up. You can’t go on letting the pain determine what you’ll do, (or not do as the case more likely is), day-to-day. Don’t let it take control. You take control.
One of the most difficult aspects of this chronic illness is dealing with the brain fog. I’m not making that up; it’s a real symptom. Brain fog feels exactly like it sounds – like you’re trying to find your way through the fog, but the fog is only increasing with every step you take. The harder you try, the more confused you become. Try talking coherently when you feel like you just got whopped upside the head with a basketball thrown by Michael Jordan. It ain’t easy. In fact, it’s impossible. Anything you do manage to get out of your mouth sounds like it’s been filtered through….well, fog. This only assures the doctor that he’s right, you’re crazy, and you need mental help.
Still, don’t let it stop you. Go home, and do your best to get some rest. When you feel better, (it does happen, believe in that), either call that doctor back or find another one who will listen. Tell him or her, (don’t ask, tell), that you want to go ahead and begin working toward a diagnosis, whatever it takes.
It took me about 18 months, and an extreme amount of patience, to find the right doctor and obtain a diagnosis. Not to mention that my family suffered greatly. My husband couldn’t understand why I, the active, social woman he met only four years earlier, could not get up off the couch even if he told me there was baklava in the next room. My sons, toddlers at the time, wondered why I wasn’t down on the floor playing with them. I scarcely remember family events because I wasn’t truly there.
The first doctor I saw about my pain was one of those who was certain I must be imagining it all; either I was a hypochondriac, or a drug addict trying to score some narcotics. He didn’t even order blood work. It took me no time at all to start looking for a new doctor. After a few months and three or four more doctors with much the same opinion I got lucky, or, more accurate, blessed. A co-worker noticed that I’d been hobbling a lot lately, running into walls, cringing at every noise, etc, etc. She asked me if I was okay. I never have liked to talk to anyone about my health problems, but for some reason I opened up to this woman and just spilled my guts. I told her all about the pain and fatigue I’d been experiencing, and about not being able to find a doctor who believed me. She recommended her own doctor, a general practitioner who was kind and caring. I scheduled an appointment. It saved my life.
The good doctor, as I’ve come to refer to her, ordered blood work first, to determine if it might be arthritis, or diabetes, both of which run rampant in my family medical history. It was neither, (though there was bursitis in my knees and tendonitis in my shoulders), so we took the next step; she ordered another blood test to check for Lupus. That was also negative, but the test for Lupus, ANA it’s called, runs a 50/50 false positive result, meaning only 50% of the test results are accurate. Because of that, over the course of about nine months, the doctor ordered two more ANA tests. They were negative also. I had two MRIs, a cat scan, and nerve testing done. Finally, upon conclusion of those tests being negative, the doctor decided I must have Fibromyalgia, and she sent me to a rheumatologist to confirm that theory. While I wasn’t too fond of the rheumatologist’s bedside manner, (or lack thereof I should say), he did confirm that I had Fibromyalgia. Finally, I began to accept that I was not insane, that I was not a hypochondriac, but that I was truly ill. As hard as it was to hear I had this terrible illness, it was also a blessing, simply to have a diagnosis. That diagnosis led to the next step, treatment.
There is no cure for Fibromyalgia. So, what can be done? The most important part of treating Fibro is also the most challenging, for me at least. I was told that I must first and foremost change my lifestyle. The fact that I was always going, going, going was the main contributing factor to my illness. How in the good Lord’s name are you supposed to slow down when you have a husband, two school-age children, and a full-time job that consumes your entire life? Good question, and not one that I can answer with confidence. The most important thing I’ve learned over the years is that I can’t possibly do it all, and worrying about it does nothing but make the pain and fatigue that much worse. So I put a stop to the worrying, or at least I slacked off as much as possible. It helped.
Keep in mind that you must exercise, but not too much. When I was in high school I was captain of the auxiliary corp, and acted in plays with the speech and drama team, among other pursuits. When I moved out of my parent’s home I held down three jobs at once. In other words, I was always on the move. It never occurred to me that I should sit down and relax now and then. Therefore, I had no idea how to do just that – sit down. I had to train myself to take breaks, stop myself from speed-walking at the park, and refrain from breaking out in a run when my sons rode their tricycles. Yes, it is easier said than done. But it can be done. You just have to stick with it. And don’t make the mistake of thinking you only need to take a break if you’re not feeling well. You must ensure you’re getting enough rest, even when you feel great and wonder how in the world you could’ve been diagnosed with a chronic illness. That’s a mistake I’ve made over and over, and I’m sure I’ll do it again. When I’m having a good day, I feel like I need to “hurry up and get it all done” before I start to feel a flare coming on. Well, guess what. That’s exactly what leads to a flare, (or one thing that does anyway).
A flare is what I call “couch days” – days when you couldn’t pull yourself up off the couch if your life depended on it, when you feel like you have the flu and have just been startled, never being able to let go of that tension that being startled causes; all the while someone, or something, is stabbing flaming needles through your fingertips, your toes, your eyelids, just wherever they feel like partying at the moment. There have been times when I was certain I was dying. That’s how bad the pain can get. You’d think the memory of those times would cause me to be more careful when I do feel well enough to “get it all done”, and in some cases it has, but for the most part I ignore those memories and set forth to do it all anyway. Take it from one who knows – don’t do it!
Another thing that must be done, but is also difficult, is to not let yourself get stressed out, over anything. Long before I was diagnosed with Fibromyalgia, I was diagnosed with chronic depression. One theory is that FMS is caused by depression. Another theory is that depression is caused by FMS. I tend to agree with both. I’m certain that my depression was a major contributing factor to the FMS, but I’m also certain that the FMS causes me to be depressed. Think about it. Who wouldn’t be depressed when they have to lie on the couch watching their children play instead of being able to get up and play with them? This is why it’s so important to properly maintain your stress level. Just like forcing yourself to take breaks on those good days, you must do something for yourself that will make you feel good, that will make you smile, that will make you laugh. Read the comics, watch your favorite episode of I Love Lucy, listen to your children laugh, whatever it is that lifts your heart and makes you feel like you’re walking across fluffy clouds, do it. Put it on your calendar if you have to.
Something else you can do to ease the pain is to make sure you’re getting the proper kind of rest. I stress “proper kind” because it means something entirely different than “enough”. You could sleep for twelve hours, but not feel any better if that sleep was interrupted by nightmares, pain in your legs causing you to toss and turn, etc, etc.
It’s important to have a specific bedtime ritual, and to go to bed and get out of bed at the same time each day. About an hour before you want to go to sleep, prepare yourself to go to sleep. Think of the things that help you relax, and use them. There are many different methods for this of course, and what works for some won’t work for others, but I’ll tell you mine.
I am a reader, maybe too much of one, (that, according to my husband). I take a book to bed with me every night. Sometimes, not having read the book before, I don’t realize that it’s going to get so exciting that the story ends up waking me up, wide-eyed, instead of putting me to sleep. Well, I’m not one to preach on the subject, but if you realize this is happening you should put the book down. I would never do that, but it’s what you should do. Then pick up something else, something you’ve read before and know won’t excite you, and read it.
Before I begin to read though, I turn on my noise machine, (one of those doo-hickey’s that make nature noises you can buy at any Wally World), to the sound of ocean waves. Then I pull the covers over me, and position my two pillows to cradle my neck and shoulders just so, close my eyes, imagine myself lying on the beach, at night, alone, and take ten deep breaths, very slowly, in, out, in, out. By the time I open my eyes back up to read the boring book I’m already halfway to dreamland. My muscles are relaxed. I’m calm as a newborn kitten. Then my husband storms into the bedroom to tell me about the exciting play on the Steelers game he’s watching, and I have to start all over. I don’t let it irritate me; I just start all over. It works. Usually I sleep peacefully for eight hours, or until the hubby has to push me out of bed to get me going the next morning. Getting that type of rest, the peaceful kind, will do wonders for ensuring your fibro pain is not as great as it could be otherwise.
These are just a few tips for controlling some of the pain associated with fibromyalgia. It doesn’t begin to touch on how many symptoms there are. Fibromyalgia can cause, or be associated with, a wide variety of phenomenon. See Fibromyalgia for more information. At the risk of sounding like a commercial, if you’ve been experiencing any of these symptoms, and are having trouble getting a doctor to help you, or even believe you, just keep on keeping on until you find the right one. They’re out there, I promise.
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