Ten Tips on Living with Fibromyalgia Syndrome
July 3, 2002
By Deborah A. Barrett
Fibromyalgia presents a daily struggle. Here are some tips--in no particular order--that have made my life easier and even downright fun.
1. Voice-Activated Software
During my first years with fibromyalgia, I was not able to type at all without terrible pain. Even a minute at the keyboard was excruciating. I carefully reorganized my work station taking into account ergonomics: good supportive chair, screen at eye level, wrist and mouse pads. Still I could not type. Then I discovered voice software. What a godsend. Thanks to voice software I finished writing my dissertation and stayed employed. The first version of these articles were written exclusively with voice software. That was in 1994, and the products that seemed space-aged then are now primitive.
Single-word speech entry has been replaced with continuous-word speech recognition. In addition, the prices have dropped substantially (about tenfold!). There are now several products on the market. The best voice-activated dictation products I've found are PowerSecretary for the Macintosh (1-800-443-7077) and Dragon Dictate for Windows or the PC (1-888-343-3773).
IBM also offers competitive products for both. English is no longer the only language offered, others such as German, Arabic, Japanese and French are now available.
If you are accustomed to typing and are quite fast, voice input will likely be quite frustrating at first. Before the software is ready to use, you must train it to recognize your voice by reading it words and paragraphs. I found that the computer 'learned' to understand me at about the same pace I learned to understand how to talk to it. Most of us have not been trained to dictate.
Plus when mistakes occur, it can take some time to fix them. But with patience this 21st century tool can be invaluable to those of us who do not have total use of our hands or arms. And they are improving all the time.
Thanks to a healthy break from the keyboard and to exercises for my wrist, arm and back muscles, I am now able to resume typing by hand. Still, when I type "too much," the pain returns. What is really great about voice software is that your computer treats it the same as keyboard entry. You can type for a while and then decide to use your voice software for a while.
For those of you who need to type at work, talk to your company about purchasing software for you. The prices have come down as low as one hundred dollars for some products. If you require it for home use, it may be tax deductible as a medical expense (talk with your doctor). College and professional students should also contact their university office for disability to see what services are available for them. Voice software is becoming a realistic option to typing. Soon I expect voice software will be commonplace for all computing.
2. Telephone Headset
Holding a phone can be excruciating, so I no longer do so. Headsets allow you to look chic like Madonna and get comfortable at the same time. On long calls I like to go through my stretching routine or relax on the couch with a heat sack behind my neck. Even cellular phones now offer headset versions or adaptations. If you rely on the telephone, headsets are money well spent.
If you are required to use the phone at work, talk with your boss about supplying a headset to accommodate you. Remind your employer of the additional benefit from the preventative aspect of headsets (for all employees) and their ability to free hands for other work!
There are several varieties of phone headsets that run under fifty dollars.
Plug-in headsets can turn existing phones hands-free. Cordless models allow you to free your hands and body. Like other cordless phones, these have a plug in base and a mobile component. The mobile component includes a headset. Some you can strap onto a belt or pocket. Radio shack carries modestly priced headset phones. Most of their cordless phones now have headset jacks. Other brands are Panasonic which makes a good quality cordless radio phone that offers a headset unit. Plantronics carries various phones with headsets. Shop around at discount stores. Make sure to check return policies so that you can check the quality and comfort of the phone at home before committing to it.
3. Microwavable Heat Pack
Nothing soothes like a hot rice pack on the back of your neck or wherever aches you most. The simplest way to create one is with an intact tube sock or pillow case. Just pour in several cups of dry, raw rice--any rice except Minute Rice works fine. I use Jasmine rice because I like its aroma. Tie the sock or pillow case closed with a good knot.
If you have access to a sewing machine you can make a more attractive version -- what I call my Happy Sack. Select a cotton fabric, double it if it is thin. Decide on the dimensions. Long and thin for your neck, larger rectangle for your back. Then sew together three sides, with the good sides facing inwards of course. Turn the sack right-side out and fill nearly halfway with rice. Turn in the ends and sew closed the remaining side.
Toss your sack in the microwave for about two minutes or so, until it reaches the perfect hot temperature to relax any muscle spasm. Heating time depends on the size of your sack and the strength of your microwave. I like to make mine very hot and then wrap it in a small towel to retain the heat. When it begins to cool I unwrap it and place it directly on my clothes or skin. Rice sacks heat up more intensely than electric heating pads and are much safer. Their flexible consistency is particularly soothing.
I have sacks of various colors and sizes that I leave in various places. Throughout the day I like to use one behind my neck to keep my tension headaches at bay. I also bring one to long meetings, or when I travel, to keep my muscles warm and relaxed. I have found that if I asked politely, the bartenders in airports will heat my sack for me. What a difference this makes for travel. I make sure to heat one when I head out for any length of drive and give them as presents to the friends and family I visit most often.
Pop one in your bed to warm the covers or your feet. Use a fashionable sack at work -- soon your coworkers will desire one as well.
4. Electrical Stimulation Unit
I have used two different types of electrical stimulation units. Each sends electric impulses from a machine through wires and electrodes to your body. You may have had electrical stimulation at the physical therapist's office. If you have found this helpful, it may be worthwhile to look into buying or renting a home unit.
There are several theories as to why electric stimulation alleviates pain. The stimulation may distract your pain receptors, increase serotonin, stimulate nerves, or help relax muscle spasm. The TENS (Transcutaneous Electrical Nerve Stimulation) unit is Walkman-sized. You can clip it to your pants or fit in a pocket and hide the electrodes and wires underneath clothes. The other stimulation available as a home unit is interferential electrical stimulation. These machines tend to be somewhat larger. The main difference between transcutaneous and interferential is in the type of wave form and stimulation each provides. If one does not work well for you, the other may.
Both are available with a doctor's prescription. A knowledgeable druggist or physical therapist should show you all the settings and ways it can be used. Since the device can be used in several ways, it is advisable to have a physical therapist advise which is the best way for you. For some, wearing a unit for many hours provides relief, for others a short therapy session can help much longer.
Prices vary considerably, so it pays to shop around. Because this is a prescription item, you should be able to submit it to your health insurance, or at least deduct it as a medical expense for tax purposes.
5. Pain Medication
Pain relief is a quintessential part of a total wellness program for people who experience chronic pain. Of course medications work differently for each of us and it often takes various tries to find the ones that work best. For some, narcotics are needed to reduce pain enough to function. I have found that very small doses can make a huge difference, particularly if they are taken early on, before pain increases too much.Unfortunately physicians are often hesitant to prescribe strong medications for chronic pain. If your physician is not open to including necessary medications in your treatment program, find one that is! Medication that improves sleep can also help relieve pain. Work with your doctor to find the optimal medications to reduce pain and improve sleep and functioning.
6. Massage therapy
Many excellent massage therapists are now familiar with fibromyalgia. For some, massage provides a real, if only temporary, relief from muscle pain. Unfortunately massage therapy tends to be quite pricey. If you can afford to have regular appointments, it may be well worth the expense. There are several ways to try to cut down on the cost of massage. Some doctor's offices have massage therapists on staff--in this case their services are often covered by insurance. Check your phone book for a massage therapy school in your area. Students are often required to have so many massage hours to graduate and in most cases are not allowed to accept payment. You may have a friend who you can barter with for massage.
As you get to know your body more and what feels good, you are better able to instruct another pair of hands. When reachable, self massage can help. Try rubbing oil on your muscles after a hot shower or bath. Massage devices can also be quite helpful. My favorite is a machine with two rotating balls that I use to deactivate trigger points and spasm. Before purchasing any device, check on the return policy. If you are not satisfied return the item.
Daily Report Sheet
This has been incredibly important for my mental as well as physical well-being. So much so that this is the basis for my upcoming book Paintracking. Many people write to me to request a copy of my personal form. I inevitably tell them that my form would not make any sense to anyone else. The fundamental idea of paintracking is to devise a form that is both easy and relevant to you and your way of thinking.
For example, I devised an easy form that I fill out every day indicating how much I slept, the quality of sleep, the weather, my mood, amount of exercise, drugs and dosages, activities accomplished, and various other factors. I realize my daily memory is not very reliable. At my worst, I often think that I always feel that bad and become quite depressed. Having a record helps me keep things in perspective.
For example, it helped me realize that I have had significantly fewer bouts of depression than I used to. I also include a category for my reaction to pain / tiredness / depression and how well whatever I did seemed to work. Having a form forces me to take action so that I at least have something to write down later. I prefer checklist, fill-in-the-blank format, so that it takes only a minute or so to complete each day. The reports serve as a record of the many, many changes in medication and other strategies and reveals trends that would otherwise be impossible to track.
To devise a worksheet for yourself, think about what you think are the most important factors that influence how you feel, such as activities, rest, sleep, medications, weather and exercise, as well as measures to represent how well you are doing. This could focus on pain level, energy, mood, or your accomplishment the goals for that day. You may also want to include an indicator of how you feel overall. The one most meaningful to me is "if every day were like today, could I live with it?" I use the letters C (for can't live with it) and L (for live with it) and then pluses and minuses to represent upper and lower ranges.
For example, a really rotten day may be rated as C- while a brilliant one would receive an L++. Over time I have seen the number of C's reduced substantially. I attribute this to the things that I have learned from tracking my experience and adjusting my life accordingly. At the very least, I learned to put my ups and downs in a meaningful context. At best, I learned how to change my behavior and environment as much as possible to maximize my good periods.
When making your sheet, concentrate on a format that will be easy to do each and every day. If you have access to the computer, you may want to create a sort of template that you can fill in by hand in a few minutes. Or perhaps you would prefer to use an extra calendar and simply devise short hand notation to represent the most relevant aspects of each day. Consider the most important things you want to include, then, how to represent them most easily. You could use drawings such as faces for moods and weather pictures.
Other time-saving devices are to type categories you can then simply circle when filing out your form. Number scales, such as 1-10 rating systems, work well for some people, while less so for others. Personalize your sheet so that it does not take more than a few minutes a day to fill out. Do not let the form become a burden in itself. The information you can learn from careful daily input is invaluable. Without this, it is quite impossible to say with any certainly anything about the trends you experience and how your various therapies and life activities are affecting you both in the short and long term.
As your needs change, change the form accordingly. The form should inform your behavior which then affects the form and so on. The more you understand about yourself over time, the simpler the form is like to become. This kind of tracking becomes especially important any time you institute a change, such as a new medication or change in your exercise routine.
8. Doctor Visits
Whenever I have to see a new doctor, I bring a detailed summary of my history on one to two pages. Otherwise it takes an extended office visit just to explain my problem and inevitably I end up in tears of self pity over how much my life has changed. Also I have found when I present a written report, including what I hope to get out of the appointment, the physician takes me more seriously and I am more satisfied with the visit.
9. Exercise and Stretching Program
A gradual exercise-and-stretching program has been the most challenging component, in my case, not because I'm a couch potato but because I tend to overdo it. I am now doing an hour of cardiovascular exercise three times a week plus a light muscle-training program. It took me two years to build up to this point after many months of frustration. The trick for me was to begin with something incredibly minimal, like 30 seconds of walking, but every day.
When it felt O.K., I increased it to a minute, and so on. When it was too much I cut back, but just a little. The result is phenomenal. Yes, I still hurt, but much less. And I can now manage to hold a teapot in front of me, negotiate my own grocery shopping. I joined a nearby gym with a sauna and Jacuzzi so after my workout and stretch program, I relax for a wonderful half hour. Not only am I combating fibromyalgia problems, but getting in shape is an added bonus (and we get so few for our efforts).
10. Finding Bonuses
On my worse days, I rent movies that I really want to see. This helps so much to prevent me from slipping into depression, instead I usually slip into the world of a foreign film.
There are many other little tricks I now take for granted, like always sitting in a booth in a restaurant or a chair with arms, relaxing with music and diaphragmatic breathing and sleeping with earplugs. Sometimes I imagine living on an island with folks with fibromyalgia so we can live a slower pace of life, help each other feel better, and really understand. Of course I'd choose to forget this fibromyalgia problem all together.
© 2000 Deborah A. Barrett. Reprinted with permission. Visit Deborah’s web site: www.paintracking.com.
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