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Living With Fibromyalgia

Debra Frick
February 15, 2007

birdHello everybody, my name is Debra Frick and I have fibromyalgia. Sounds like an introduction at a 12 step program, doesn't it? But sometimes, it is the disease that defines who we are. Now, I must make it clear that I am no expert on fibromyalgia; except for the fact that I live daily with the pain and I know many people who suffer as I do. This is my story, plain and simple. I am telling you this story to try and give some suggestions of things that have worked for me and might work for you.

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I know that everyone's symptoms are different with this disease. Some suffer greatly and are in and out of the hospital. I am lucky, if I am not in flare, I can cope with the strategies that I have come up with. What I am trying to offer you, my friends, is hope. It is a powerful motivator.

Ten years ago, I went into my doctor's office with fatigue and sore muscles. Having raised 5 kids who were almost adults, I was used to being tired but this was more than tired. There were days I felt I just could not force myself to get out of bed. I kept telling myself that if I just slept an hour more, I would feel better. It did not work, so off to the doctor's I went. My doctor took my complaints seriously and ordered a bunch of tests. It came back that I had hypothyroidism. He prescribed medication. It helped some but on those days when the teenagers were acting up, as they will, my symptoms came back with a vengeance.

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I started experiencing chest pain and thought, with my family's history of heart attacks, I might be getting the symptoms to have one. But the doctor told me I had acid reflux and GERD. Now I was getting concerned. I had been a reasonably healthy person all my life and now it felt like my body was falling apart. And what about your sore muscles, you ask? Well, in the flurry of all the tests that went on for more than five years, he found that I also had irritable bowel syndrome, but there was nothing that could or should have made my body feel like it was on fire.

Finally, when I thought I was just going crazy, my doctor sat me down and told me that I have fibromyalgia and that all of these other things were very common in people with this disease. Because fibromyalgia was a new diagnosis, he had to run every test under the sun to rule out everything else before he made the diagnosis. Many medical practitioners did not yet believe that it even existed. He told me there was no cure! And that my life would never be the same. That it would get worse and that he would try to alleviate the symptoms as much as he could but that I had to mentally prepare myself for the worst. That I probably would never work again and that I would spend a lot of time in my bed in pain and extremely tired. He told me to get into a gentle exercise program, not one to burn fat or make buff muscles but one that was gentle stretching.

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That I should keep taking all the medications that he had prescribed and try not to get stressed out or overexert myself. OK, I will admit at this point I was a couch potato, having been a stay at home Mom, but the thought of exercising stressed me out! I was taking a handful of pills everyday and I was not feeling any better. I had many people who are dear friends wanting me to try any new craze that came along. I realized that this disease was running my life. Probably the hardest part was to get my family and friends to realize what this disease was all about. It was hard on them because they did not want to think about all the pain I was in. On days that were good for me, it was hard not to forget that tomorrow could be really bad.

Coping is the thing that all of us desperately want. We go to the doctor and we listen as he tells us that we have this incurable, painful disease and that there is not much hope. Then we get back to our lives and we have a hundred people telling us of the latest craze for a new cure. We go back to our doctor and explain what we have learned and ask for advice and are told there is no cure. But we have a life to live here! So try anything you think might work but always check with your doctor to make sure that it will not react with any medications you are on.

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Depression is the number one factor in all of this. Educate yourself on what the symptoms are and strategies to cope. There are many fibromyalgia sites where you can get good information. Here are a couple I found very useful: http://www.fmnetnews.com/pages/basics.html and http://www.mayoclinic.com/health/fibromyalgia/DS00079. The more informed you are the more control you will have. Involve yourself in your treatment. You have the power to change some of what is happening to you. You may have contracted this by too much stress in your life or by a car accident. I got fibromyalgia right after my mother died. She was my best friend and she was there one day and gone the next. But you can change some of the things in your life to make it better. Take it one symptom at a time. I was so depressed listening to my doctor that I thought life was not worth it. Throw in the people who had no concept as to what I was going through and I was really mad and, in that madness, I made a decision. Since many of my symptoms were stress related, I would try to alleviate the stress in my life. Now I have always been a high strung artist type and even little things used to get me going, but I learned to breathe through the stress. There are a lot of breathing techniques out there. Learn one of them. Google it, you will find websites that will teach you how to do it. Even if you just take some deep breaths and close your eyes, you are closer to your goal of not getting stressed out.

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Pain stresses me out. I find that my mind works overtime when I am in pain and the more I think about it, the worse it gets and anxiety starts to hit. I have found that meditation works to slow my mind down and relieves my anxiety. You can buy tapes at Walmart that will help you tune in to your quiet place. The Internet has a lot of articles on meditation, if you think this would help you. I also keep a journal where I write about things that frustrate me. I have found that writing down what I am feeling and not keeping it bottled up inside really helps. Plus I re-read what frustrated me yesterday and find myself smiling that it would not faze me today. I tried the exercise program that my doctor recommended and found that keeping limber seemed to help with the pain.

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But do not overdo. If you find yourself getting tired, stop! You can always do a little more tomorrow. You are just trying to stretch to relieve pain, not work out for a marathon. I found that getting out and walking did help with the depression. I try to walk in new and interesting places so I don't get bored and I try and mix up my locations. One day, I might walk at the mall or a new park in a new part of town. I take a digital camera with me and take pictures. Even if I don't get the best shots, I have been out and doing something and that helps to fight the depression. When it is cold I know that this could aggravate my symptoms so I stretch and work out to a tape at home.

Instead of focusing on what I could not do, I tried to focus on what I could do. OK, I could not work a 9-5 job, so I got myself a job working as a crossing guard for my school district. I worked a one hour shift in the morning, and I can come home and rest and a second shift in the evening. This worked great until I had to have more money, they just happened to have an opening in the lunch room. It was a little bit more physically challenging but with my chiropractor's help, I slowly worked up to it. I highly recommend, if your insurance will pay for it, to see a chiropractor as he has been the most reliable thing to relieve some of my pain. What I am saying is that life does not have to stop. If you are lucky like me and your income is a second income, you may be able to find some part time work that is not taxing. If you can sit for any time at a computer, you may find work as a researcher or typing for other people. Any part time work is something; it gets you out of the house, you get to help yourself, and that helps with your depression. If yours is the only income, talk to your doctor about applying for SSI. If you have worked all of your life and are now disabled enough that you can not work, there is this option.

In my life, I had no time for the handfuls of pills I was taking. I found that there were natural ways of coping with the pain and stiffness and other symptoms. Now I do not recommend that you take yourself off your doctor's prescribed medications with out consulting him first, but there are natural ways of dealing with this stuff. Believe me, your doctor will probably be very receptive to anything you would like to try. I take a good multivitamin and mineral supplement every day. I also take extra B vitamins for energy. I tried those new energy drinks but they just gave me a headache because of all the extra caffeine but if they work for you, great. I also still take my medication for my hypothyroidism. My doctor prescribed non habit forming muscle relaxers and pain relievers for me. I only take these when I really need them.

I avoid situations where I know I will get stressed out. I have changed my eating habits so that my acid reflex and irritable bowel are under control. I found a pool at my local recreation center that has water aerobics for seniors and am thinking about joining a class as this is exercise that will not overly exert my muscles. Not feeling drugged out has helped me immensely. I deal with brain fog by doing simple brain exercises like reciting to myself bible passages or running my times tables. It helps to keep my brain active and helps me to concentrate. I ask people to be patient when I can not find a word. I do things in the morning when I have more energy and when I have less brain fog. Figure out what your best time of day is. Then try and schedule the things you most need to get done in that time frame.

Sleep disorders are a part of fibromyalgia too. I have a hard time sleeping so I make sure that I go to bed at the same time every night and get up at the same time every morning. When I just can't sleep, I take melatonin to help with my sleep and of course a glass of warm chocolate milk never hurts. On the really bad, bad nights, I take a prescription sleep aid. Don't be afraid to ask your doctor for prescriptions you think will help. Just be aware that the more you take of prescription medicines, the more your body builds up resistance. So always go with the least amount of anything. Remember that this is a long term illness that may get worse for you. You want those medications to keep working for as long as you can. I always try to eat some protein in the morning which seems to help with my mental awareness.

"Fibro Flare" are the most dreaded words that anyone with fibromyalgia can hear. This is when, no matter what you do, you can not control the pain or your other symptoms and you can be confined to bed. Depression can hit you really bad at these times. Here are a few of my coping mechanisms that I use for when I am in flare. I eat chocolate. Don't laugh, it makes me feel better. I have a stash of movies that I only watch when I am in flare. They make me feel better and I can concentrate on something else other than the pain. My husband hung a bird feeder outside my window so I could watch the birds from my bed. I have bought a lot of classical music tapes for when I have migraine headaches due to flare. I close all the shades and drapes and put on some music to soothe me. I eat soup. It seems to soothe the pain. I make the soup when I am feeling well and freeze it in Styrofoam bowls and then in a freezer bag so all my husband has to do is warm it in the microwave. All I can say to you is that it will end even if it feels like it won't and don't be afraid to call your doctor! He may want to put you on something stronger just for the duration. Talk to a friend that understands and talk about other things than your pain. It helps to get your mind off of it.

Well, that is my story and I hope that it gives you some insight into things you can try for yourself.

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4 More Solutions

This page contains the following solutions.

October 21, 2005

I have fibromyalgia, as well as other forms of arthritis, so between pain and fatigue, I often don't know what I will be able to accomplish on any day, so I make the most of good days...

 
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Debra Frick
March 7, 2007

After writing "Coping with Fibromyalgia, One Woman's Story", I got a lot of feedback from friends and family saying that I had not written all I could about coping strategies. They felt I had left out some important points that needed to be made, so it lead me to write this article.

 
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