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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.
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.
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.
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.
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...
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.
Ask a QuestionHere are the questions asked by community members. Read on to see the answers provided by the ThriftyFun community or ask a new question.
I have fibromyalgia-cfs. If anyone else out there has this and has any ideas on making daily living, ie; chores, etc. easier and less taxing on the body, please share. I have days where I'm in so much pain it's hard to even take a shower. My hands hurt so much just holding a tooth brush hurts. So any ideas would be appreciated and if anyone else has this and wants someone to 'complain' to, send me an email.
Valery from NJ
hi hon, I also have that Devil. Day my Day. I do know what you are going through. Bless you . You can contact me at cinnamon44c @ yahoo.com (remove spaces) Maybe we can talk some . Debra
Hi! I feel for you. My last bad bout, I was in bed for almost six months wishing I'd just die. Good news though I've beat it and seldom have a flare up anymore. Those flare ups only occur when I don't do what I know I have to. My husband is thrilled to have his wife back!! I'm almost 52 years old and feel better most of the time than I have in 25 years.
Before, I can advise you and tell you what I did; I need to know more information about you. 1. Are you a woman? Most of us with this DEVILl are!! 2. Are you on Hormone Replacement Therapy? I'll have other questions if you e-mail me! Or if you prefer to speak on the telephone I'll give you my phone number when you contact me by e-mail. I know typing is often difficult because of the pain!
My e-mail address is ChrstmasCarol @ yahoo . com (remove the spaces) (without the "i" in Christmas is correct). I'll be happy to tell you more when we can do so without too much delay. As well as anyone else who reads this who wants to know what I did. Carol
I've had this for 19 years. Here's some of things I've done to help myself:
- Cut my work back to part-time
- Make sure I get enough sleep. I always hurt more when I don't have enough sleep.
- Walk daily.
- Take ibuprofen when I start to feel a flare up coming on. Seems like if I get ahead of the flare I can stave it off.
- Try to avoid a lot of stress.
- Have cut out almost all caffeine as it messes up my sleep and also makes my legs twitchy.
- Try to move around a lot during the day alternating positions. Seems to help with the pain.
- Try to find interesting, fun things to do as it takes my mind off pain and makes me less of a complainer.
- I try not to talk or focus on it too much as it seems to hurt worse when I do.
Just be patient and very tolerant of yourself. Don't push yourself to hard but do stay as active as possible. Best wishes to you!
I have had fibromyalgia for 18 years (since 1987). It was so bad that some days I couldn't get out of bed or if I did I could hardly move. It hurt so bad that I once told my husband to call Dr. Korvorkian. He was not amused. My doctor put me on a low dose of antidepressant, not for my state of mind but he told me that fibromyalgia didn't respond to regular pain medicine and they found that the antipressants worked. I had to take four different ones before I found one that I could tolerate. I also took MSM and Magnesium maleate and I had a full body massage once a week (sometimes twice a week). Those things in combination helped somewhat but I would still get flare up quite often. A year and a half ago I saw a doctor who was a medical doctor but for the last 12 years or so has been doing holistic and natural healing. She had me start taking a vitamin and mineral supplement.
It costs me about a hundred dollars a month, but I no longer have to get weekly massages and at $60.00 a pop that alone saves me $240. I also don't have to spend money on the MSM and Magnesiun Maleate, and I was taking 5 pills of Elavil each evening and now I only take 2. I also don't have to take any vitamins because my Medical Doctor checked the ingredients in the supplements and he said that they contain everything I need. So, I'm spending about $100.00 per month but I'm still saving about $200.00 and I feel sooo much better. I had not been upstairs in my house in over five years and now I don't have any problem. You can't buy this stuff at WalMart or the health food store, you have to get it from a dealer. I don't know if I'm allowed to give out the name on this site but if you e-mail me I'll give you more info. I promise I won't try to sell you anything, I'll just give you info and then you can follow up or not. I became a dealer just so that I could get a discount. My husband also takes it and his blood pressure has gone down and his feet and legs don't swell up as much. Anyway, my e-mail address is: margarett @ juno . com. Remove spaces. Good luck!!
I have it and RA too. Good days and bad. I agree that if you can walk any at all it helps. Even if it is around the outside of your house. The main thing is to keep trying. I gave up for years and was mostly bedfast but then had a remission and managed to get to walking. Right now I am in a flare but with more than just the fibro.The most important thing is to get enough sleep and try to reduce the stress. Anyone can contact me at aliceann29 @ yahoo.com
You guys are so wonderful. I never expected such a great response. I'm also sorry you all have this nasty devil living in you as I do. I will write to each of you. A little at a time. I've not used the computer much for a few days since my hands hurt so much. Today they feel a little better and I don't want to mess it up. This weather change is really a bear to cope with. Thank you all again. You are all truly angels. Valery
Hello, I can feel for your pain as I too have this problem. I stumbled on some relief quite by accident as also have Lupus and arthritis. I was told to try a product call Lakota so I bought the roll on form of this product. It is so easy to use and has given me hours of relief. One day I had so much pain from the fibromylgia in my arms I decided to try it on my arms. What a relief I felt when it actually worked on this too. It is worth a try, although it may not work the same on everyone. Good Luck!!!!!
My sister-in-law has been diagnosed with this also. I mentioned this to a dear friend who is the office manager of a physician. She told me that this doctor always recommends a certain book to his new patients who have this illness. She said many of those patients have used many of the suggestions in the book and have gotten relief. I ordered the book recently (on Amazon.com) for my sister-in-law. I'm not sure if she has read it yet or made any attempt to try new things. I just try to be supportive and not critical. It seems to me to be worth a try. The name of the book is "Reversing Fibromyalgia" by Joe M. Elrod. My wish is that all of you suffering from this disease get relief. Don't give up!
I'm 48 and have had Fibromyalgia since I was a child. It has a tendency to run in families, and more often in females. I've always pushed myself to work, so I could have a somewhat normal life, but it really isn't normal because of the limitations. I've worked for various doctors for 20 years, and here are a few things I've found that help me (everyone is different).
--Cut out as much white/processed food as possible (Breads, pastas, bagels, pretzels, etc.)
--Avoid all sugars. This is extremely hard to do, as the body seems to crave them.
--Eat high protein meals. For some reason, protein helps this condition.
--Stay away from caffeine and nicotine. They are toxic to your body, especially with this condition.
--Never over exert yourself. If you do, you'll pay for it later.
--Get as much rest as possible. I don't say sleep, because as this condition progresses, it will affect sleep patterns adversely.
--Take time to relax and destress.
--As someone else said, massages help tremendously, but are expensive.
--I soak in a tub, filled with hot water and epsom salts to draw soreness out. Hot showers also help, though not as much as a bath.
--Take a good supplement, along with EXTRA calcium and magnesium. Just because a multiple vitamin has the recommended amount of these minerals, doesn't mean that your particular body's needs are being met. Calcium helps muscles contract, but magnesium helps muscles relax--they must be taken in a 2:1 ratio. Few individual's bodies properly absorb these minerals, and people with fibromyalgia have a greater need than normal.
--Get some sun, 15-20 minutes daily, if possible, WITHOUT SUNBLOCK. It will help with the depression.
--Eat properly. I know that if I skip my vitamins or a meal, I can really tell the difference.
--Get a GOOD vibrator, not a cheap one. Use it regularly to relieve pain and muscle spasms/knots. Run it on the soles of your feet too (reflexology) to help remove toxins from your body. You'll be surprised at how good this feels.
--Use anti-inflamatories when needed, but as little as possible. They are medications, and there can be serious side effects. There will be periods when you can go without them.
--DO NOT allow any doctor to over-medicate you. I've had some that have tried to put me on medications that were too strong. They also effect the quality of your life. While they may take some pain away, they also insulate you from experiencing the joys of life.
--Do not be afraid to take antidepressants if needed, they may help you through a rough period, just be cautious.
--Live as normal a life as possible and do not give into the pain. It will try to take over and run your life. Remember, stages pass--you will go through bad times, but there will be many good ones too.
--Find something you enjoy and can do (it really doesn't matter how good you are at it). This takes your mind off the problems and renews your spirit. Even in bed, you can read a great book, crochet, quilt, etc.
--Get out as much as possible. It helps retain normalcy in your life, gets you fresh air, exercise, and makes you feel that you are still a part of life.
--Maintain a routine whenever possible. The body functions much better on one, and it helps your family know what they can count on.
I know there are lots more small things that have big impact that I've forgotten, but I hope these help someone. Diet and attitude make a big difference in fighting this condition. Remember, you are not alone. Good luck.
I also have fibro and was disabled for 6 months back in 93. The only thing that broke that bad spell was hydrotherapy. The first month felt like nothing good was happening, then I realized I wasn't in constant pain. I take ambien, lowest dose, to get the sleep i need, 1 celebrex a day and have altered the way i do things to lessen strain. I live in jersey too. p torpey @ hotmail. com drop me a line on a good day. Thanks to all who posted, nice to know I'm not alone!!
I know about this disease too and would like to receive an e-mail from you Valery. My e-mail is dottylewis @ sbcglobal.net (remove spaces)
Oh my gosh! I am so thrilled with all you wonderful gals that wrote. Though I am sad you all suffer as I do. I have made new friends here. Thank you all. I have known I'm not alone with this disease, but to be able to write and talk to others is so very helpful. I really dislike being home all day. But when I think of what it takes for me to just get up, shower and dress, well that's can feel like a full days work sometimes. Today I feel terrible. I know the weather change affects me and probably most of us with fibro/cfs. It's hard for me since I also have such bad hot flashes ( such a silly name for it don't you think) and as soon as start moving around they get worse. If it's too warm in the house I end up too hot. When the hot flashes/sweating are bad, most of the time, I feel like I'm being suffocated. I have to dress so I can strip layers off. It's exhausting too. But I try, and I am not very successful, to tell myself that , You wake up every morning and are able to get out of bed. Count your blessings. Boy can it be hard. Now I have all you wonderful people to also add to my blessings. Thanks to you all. Be well, hug gently.
Hello and I too have Fibromyalsia. My doctor ordered a sleep study for me and found that I also have sleep apnea. (you stop breathing while you sleep) he told me that this is a common thing when people have Fibro. He put me on a Cpap machine which forces air down your throat. I hate the dang thing but I do feel more energized in the morning and in less pain because I sleep better. I am able to maintain a part time job but I am also going through menopause and i sympathize with the woman who also was having hot flashes and night sweats. It gets lonely out here sometimes feeling like I am the "ONLY ONE" who have this disease. My family really does not understand. Thank you for letting me sound off and I hope you all have "Flare Free Days" ahead.
If any of you would like us to start a Fibromyalgia group for you, we can do that. Just let me know through the contact form. One of you would need keep an eye on it for us but we can get it going for you.
Susan from ThriftyFun
Hello and thank you in advance. I have fibromyalgia. I work in 2 jobs that I really enjoy but are physically taxing. I work with autistic students as a one on one. I find myself having to restrain a student or running after him often. I am so sore at the end of the day I am not functioning at my home properly. I am also a nurse doctors assistant at night. I am disorganized naturally so that is also a problem. I have just taken all day just to clean my bathroom. I have to take breaks. I can't afford a cleaning lady. Does anyone have any suggestions? I live alone in a 1 floor condo with my dog. i know there must be fibro support groups out there but I don't know of any.
Sandy from Baltimore
Hi, I have fibro too and also work two jobs. I work as a crossing guard and as a lunch room attendant. I know exactly what you mean I too have a hard time functioning at home after work. I find that a good grade of vitamin helps to keep my energy up and also eating a high protien breakfast helps me to keep going. I have found lots of information on the Internet, many claiming cures but the most helpful have been the online support groups sometimes just talking and knowing you are not alone helps. Try the internet and see if it can't help you too.
I have found a lot of help at FlyLady.net.
She taught me how to work 15 minutes at a time (I actually use a timer) and to declutter my home so I don't have so much stuff around that I am overwhelmed.
Not much help with pain, but I don't think those of us with fibro think we will find much help for pain. I have found that working for 15 minutes and resting for at least 15 minutes and drinking lots of water helps me a lot.
I have MS so understand well the challenges of fibro. I'm a natural slob so I have subscribed to the site http://www.flylady.net for help in organizing my home. It is so supportive in breaking down the mess into managable pieces. Check it out--and if you are puny one day, it won't kill the house to be let go one day. I am a single mom of 4 kids and am unable to work--this FlyLady is great! Good Luck! (Have you checked Johns Hopkins, the drug manufacturers rep., even the reumotologist for a support group)
Contact your local arthristis foundation to see if there are any support groups around. There is a magazine called FibroAware, I think, that is great. If you are not under the care of a rheumatologist for fibro, you should be. They are specialists that treat all arthritic-type diseases. Try to cut your tasks down into manageable chunks. Rather than trying to clean the bathroom, decide to clean just the tub. Later, when you feel up to it, cleran the counters, etc. When folding a basket of laundry is overwhelming, I empty the dryer and grab a handful each time I walk past the basket. I can manage 1 handful of laundry at a time. Before I know it the basket is empty. Same with unloading the dishwasher-do just the top rack. Later do the bottom rack, etc. Don't beat up on yourself, try to be kind to yourself and not waste your energy. I too was a special ed teacher, and I needed to transdition into a job that was less physically taxing. Perhaps you could be an aide to less severely handicapped kids?
i found support groups by going to yahoo.com, then to groups. from there, you can search for your topic, or look under health
I have severe FMS. I certainly can undestand what you're talking about. I see someone else has recommended www.flylady.net. I too am a "Flybaby." There is a yahoo egroup called Flybabieswithfibro or perhaps its flyingwithfibro. Those of us who belong all have fibro and are "flybabies."
I am concerned about your working two jobs. Those of us with fibro seem to do things like that. We also try to do more than one thing at a time (multitask). You may need to think about what you're going to do once you can no longer work these jobs. Perhaps you can choose one of the two and go with that. Also, I think you should check out disability insurance.
Best of luck