Coping with Fibromyalgia: One Woman's Story

Debra Frick

Hello 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. 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.

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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. 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.

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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. 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.

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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.

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.

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. 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.

About The Author: Debra Frick is a mother of 5 and a grandmother to 7 grandsons. She is a published author and poetress. Born in California, she now lives in Colorado Springs with her husband and many pets. Her hobbies include crocheting, reading, arts and crafts and bargain hunting.

February 15, 20070 found this helpful

Thank you for your encouragement! You told me more in one article than my doctor has told me in several years! Like you, I also write, fight brain fog, have severe sleep disturbances, GERD, IBS, etc. I also have some potentially fatal problems like cardiomyopathy, Graves Disease, diabetes, and a particularly nasty form of asthma. I will try some of your strategies! I'm sure they will help.

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February 15, 20070 found this helpful

Blessings upon you my friend!

I suffer from Fibromyalgia. I have the very same disorders you named here as well. Every single one of them. I salute you for sharing you struggle and your solutions. It was a long road for me as well. I hurt to stay in bed and hurt to not stay in bed as well. A constant up and down. As anyone who suffers from Fibro knows. Gentle hugs to you.

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February 15, 20070 found this helpful

yes i am there too. i have had it for at least 15 yrs but the drs kept saying there was nothing wrong. well finally a rhematologist just said oh you have fibro.

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February 15, 20070 found this helpful

Try using The Bean for exercise. It provides a lot of support, yet permits you to get your heart rate up.

I purchased mine at Ulta, but you can also find them at sporting goods stores, Target and ebay.

www.bean.com

I also purchased the Flex 10 unit with the stretchy bands that fits under the Bean. Am quite pleased with it. They have a dvd that goes with it and I like that one, too. It goes slow enough to follow, yet is perky enough to remain interesting.

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February 15, 20070 found this helpful

Hi,

I to suffer from fibro and it has devastated my life and I enjoy hearing how others are coping, i visit web sites that have good support message boards and it helps you to know you are not alone and most people have no idea what the disease is unless someone really "tries" to understand.

I have interestital cystitis, restleg syndrome, vulvar cancer, sleep disorder.

I feel mine was brought on from a very stressful divorce and child custody battle there were some small signs before but it really manifested itself during the several years of stress.

I pace myself, i to am disabled and i scrapbook and try to look for positive things to entertain my mind.

I am so very thankful for others who share their story and to feel a friend holding out a hand for another who truly can say i have and do walk in their shoes.

Much Hugs & Kisses

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February 15, 20070 found this helpful

I have written this same message about fibromyalgia. The difference is my doctor is a physiatrist. His help in changing my meds to non drug type meds. He also has a workout gym in his clinic and he does massage and deep heat therapy. He plays upbeat music and insists that the patient is allowed to enjoy their visit. WE have monthly birthday partys; bellydancing lessons .

STOMP LESSONS . We can moan and groan . WE say ''been there done that ''. We also do not get to say'' I can,t do that'' . We have to say ''I will try.

HAS ANYONE ELSE NOTICED THAT IF YOU ARE ON ANTIBIOTICS you have no muscle pain. I have had three surgeries since I was diagnosed with F M. AND I was amazed that I had no muscle pain.

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February 15, 20070 found this helpful

Debra's story sounds just like my own.I am disabled because of the fibro I have.People look at me like I am too lazy to work and there isn't anything wrong with me.I look fine on the outside.

My flare ups feel like the flu.I ache all over even my face.I can't hardly touch myself in some places it will hurt so bad.I am only 52 and I worry a lot about how much pain I may be in at age 62.I take methadone for pain every day.My doctor keeps preaching, exercise,exercise,exercise.Of course exercise isn't going to hurt anyone.They tell you to do that because there isn't much you can do,but learn to live with it.Anyway,I wish you all the best.I know it is hard but we have to keep trying.

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February 16, 20070 found this helpful

Debra, This was quite an impressive article. Even as a nurse I have struggled for years with the validity of fibro. Knowing you has helped me understand that "real" people suffer and they are not just lazy. I know your issues first hand and you are awesome. This article was well written and will be helpful to many. Thank you for sharing your story.

Trisha

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February 17, 20070 found this helpful

I have recently been diagnosed by a pain clinic with fibromyalgia. I have suffered with pain for 6 years and kept seeing different physicians but could find out what was causing my all over body pain. I also have a rare disease that affects my balance when standing or walking on anything with any type of motion. It helps to hear that others are finding ways of coping with fibromyalgia and sharing it with others who recently discovered what their problem has been for so long. I am 43 years old and have a many years to cope with these diseases and I appreciate any advice I can get. Thanks again.

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February 17, 20070 found this helpful

My mother suffered from fibromyalgia for many years, and like so many others was scoffed at for her lack of visible symptoms.

Please consider what janice posted above -- there are many new studies out that are linking fibromyalgia with a chronic, deep infection of the muscles. There is an anti-biotic called colloidal silver that you may be able to find at a health food store.

Blessings & Warms Fuzzies!

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February 18, 20070 found this helpful

I have been around people who suffer form fibro. I see the pain they are in all the time. I have one friend that has so many meds. that she has to take that she has a little box that looks like a tackle box she has to take with her every where she goes. She also has other medical problems to go along with that. I see her struggle everyday and push herself to the limit. She says she will never give up no matter how much she hurts. I see the will that she has and if she can do that, than I can do things I never thought I could. Nothing in the world that I have will ever be that bad. People who think they have life so bad need to be around a person who suffers like everyone who has written to this. Then they will realize that thier life is not that bad.

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February 21, 20070 found this helpful

I have had fibromyalgia for approx. 8 yrs. As everyone else who has it I went through every test and saw multiple doctors for at least 2 years before finally being diagnosed. I actually had remembered hearing about the disease on T.V. My daughter and I discussed it and searched the web for information. My symptoms started after a heart attack in 1998, followed with 8 surgeries in less than 6 months. Two of my surgeries was open heart/bypass surgery. Both surgeries were done in less than 2 months apart. I have been told and have read that Fibromyalgia usually starts after some type of "trauma". I have also found out through research that this disease affects a great deal of "nurses". They think it may have something to do with wearing rubber gloves for lengthy periods of time as in surgeries. This fact has not been proven but I was a nurse for 22 years and assisted with surgeries 2 to 3 times a week. I have also talked to and shared symptoms and problems of the disease with other women during a Fibromyalgia seminar only to find out that at least 1/3 of the attendants were nurses or aides in the medical field. I have read the other feedbacks and wondered if any of you were or are nurses! I do take Elavil and Neurotin at bed time and this helps me get the quality sleep that you need to lessen the pain. Stretching exercises do help during the day as I also have peripheral arterial disease (clogging of the arteries in the arms and legs, especially the legs which makes it very difficult to walk any distance without resting several times. I too try to read a lot, work crossword puzzles and other word games with my husband. I also joined an acrylic paint class with two other women once a week. This helps get me out of the house and for 2 hours its a time with other women and we have a great time. Every day this disease is becoming more recognized and treated with more doctor's admitting this is not just in our head and is a serious problem that more and more men and women are being diagnosed with. I do want to tell anyone that is recently diagnosed with Fibromyalgia to stay away from the narcotics that some doctors want to prescribe for daytime use. They only fog your mind more and do not help with the pain in most cases. Sometimes the best medicine is little or no medicine but simply avoid stress as much as possible.

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February 21, 20070 found this helpful

Fibromyalgia is chronic inflamation caused by auto toxification. There are natural products on the market which can help reduce if not eliminate the flares and pain. There are some simple steps you can take which will help support you while you change your diet and activity. Antibiotics and pain killers further weaken your immune systems and harm your major organs, i.e. kidneys and liver. There is more and more medical research that is supporting this. You won't hear about it from pharmaceutical companies.

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March 30, 20070 found this helpful

HAS ANYONE ELSE NOTICED THAT IF YOU ARE ON ANTIBIOTICS you have no muscle pain. I

**************************

Yes, because a good portion of you are suffering from LYME DISEASE! Late-stage, too, but u can get better. Dont expect any help from most MDs though.

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June 1, 20070 found this helpful

I am a massage therapy student and have learned that massage can help people with Fibromyalgia. It can reduce your pain and help improve your sleep. Please contact your doctor to get a referral to a good massage therapist in your area who deals with fibromyalgia. I hope this information helps you. Best wishes.

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November 3, 20080 found this helpful

Thanks for your article. I am always looking for advise, especially on the days, I feel like I just can't go anymore.

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January 30, 20090 found this helpful

Thank you Debra, so much for writing this article. I too found out more from it than I have from the doctor. Why do they do that to people anyway? We have the right to know what is going on in our own bodies. Does anyone know yet whether or not Fibro will cripple us or not? I'm still trying to find out that one. Can't get a straight answer anywhere.

To all of you out there that is suffering, my heart and prayers go out to you as we take this painful journey. Debra did give me some hope tho with her upbeat attitude and the little things she does to get through it. God bless each and everyone of you out there and thanks for the input.

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March 12, 20090 found this helpful

I'm going to be in Colorado later this year---I would love to meet you Debra and give you the world's biggest bear hug, only to the point it didn't hurt either of us :). You have written like you are inside my mind and body.

I FINALLY found a great/honest doctor and was diagnosed over 10 years ago, but have actually had "IT" about 20 years. I had one doctor tell me "if you'd get off your butt, and lose some weight, you'd be fine!!! My daughter's doctor told her---there is no such thing (as fibro), it's all in people's heads, once they get diagnosed with fibro, they're just fine (because they have a word to use to whine about)!!! Boy would I like to meet him, and inflict something on him to whine about!!!

My diagnosis list has also increased to about 18 other problems, some are directly connected with fibro, others are not. And on top of them, I had the 27th surgery on my feet in Nov., besides all kinds of other surgeries over the years.

When I meet someone newly diagnosed, my first words of advice are 1) get a spine, stand up for yourself, take control of what you can, and decide to LIVE...harsh as that sounds, it worked for me. 2) Tell family & friends, to expect you to NOT be your "normal" self anymore... because you won't be. 3) Fibromyalgia will definately show you who really is a friend, and who isn't....which mentally hurts, and you will miss those that are no longer in your life. 4) Expect lots of people to "guffaw" when you tell them what's up...If they don't see a cast, brace, cane, wheelchair, etc., the general public does not believe there is anything wrong or anything you say.

I am by no means belittling anyone's illness, but why is it, if you say you have cancer, even if the signs don't physically show yet, people believe you, and at least "empathize"....but if you say you have fibromyalgia, they react like "YEAH RIGHT"?

I would like to start a fibro "support" group here in Wisconsin, but it's going to take me a little longer to get it together.......again I sound mean/harsh/sarcastic, but my first rule would have to be....NO WHINING, NO PITY PARTY, we're here to help each other.

I guess I could go on much much longer, but today is one of my foggier days, and this much has taken me over an hour to type & retype.

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