Deborah Barrett, PhD, MSW, LCSW is a clinical associate professor in the School of Social Work at the University of North Carolina at Chapel Hill, and a psychotherapist in private practice. Professor Barrett has published self-help articles on fibromyalgia and other chronic pains as well as scholarly papers on health, illness and public policy. Her book, Paintracking: Your Personal Guide to Living Well With Chronic Pain, offers a hands-on approach to improving life with chronic pain, in conjunction with the accompanying website, Paintracking.com, with its free online tracking tool.
Feeling Like You’ve Been Hit by a Mack Truck: Mornings with Fibromyalgia
What does it feel like to be run over by a Mack Truck? Thankfully, actual occurrences are few.
When I first developed pain, and long before I heard of fibromyalgia, I used Mack Truck metaphors for my own experience. Having grown up near the company’s headquarters, I may have been quicker than average to make this association. Yet, when I was finally diagnosed and began reading about people’s experiences with fibromyalgia and related pain syndromes, I found such references were rampant.
Most people with chronic pain would probably agree that a personal collision with a truck would exceed even their highest pain moments – after all, those machines weigh tons, and any survivors would unlikely be spared bones or flesh. Fibromyalgia is usually described with benign words such as achiness, stiffness, or tenderness, or as muscles that feel over-exercised – all of which can refer to what everyone experiences from time to time (if not chronically).
These words may fit people with milder symptoms, but they are wholly inadequate for those whose lives have been upended by FM’s unrelenting arrival.
It’s a problem of magnitude.
How in fact does one convey feeling wracked with pain, in one’s skin, joints, or nerve endings throughout the body, from head, neck, shoulders, on down?
It’s also a problem of visibility.
“If someone were experiencing that level of pain, it would show!” Yet it does not.
What would a reasonable response look like to awakening with searing pain? You might cry out, whimper, rush (with help) to the emergency room, or fear moving at all. But getting up and going on with your day as if nothing were wrong would feel inappropriate, even absurd. No?
Yet for many people with chronic pain, “normal” mornings deliver a shocking level of pain. Even after nearly two decades, I can be surprised by the force of the pain that routinely follows a mundane evening and solid night’s sleep. And like many who live with painful disorders, I have learned that I benefit most from acknowledging the pain (maybe observing its perseverance or tenacity) and then forcing myself out of bed and into the day.
Living well with fibromyalgia can involve observing and then ignoring the feeling that you’ve been hit by a Mack Truck.
Going about your day despite intense pain requires the paradoxical skill of acting opposite to your intuition. When your whole body hurts, it takes a powerful narrative to convince you that getting up or moving will help. But in most cases, it does.
The more self-knowledge you have about the probable outcome of a chosen response, the less difficult it becomes to act in ways that can feel counterintuitive. By learning the consequences of your morning choices, you can benefit from heeding your data rather than listening to your body. Over time, you can develop a new intuition based on what works.
But even when you know that you will benefit from getting up and going, it can still be difficult. For members of the morning Mack Truck Club, consider the following:
1. Appreciate your strength. Remind yourself that no matter how hard a morning may be, you have experienced worse. Be awed by the pain. Admire its ferocity and persistence. Then be awed by yourself and your ability to get through this.
2. Treat each day as an experiment. By treating each morning as an opportunity to learn, you can find value in any response you choose. For example, you could see how you feel when you chose to lie low for a few hours, push past the pain, stay in bed all day, engage in particular activities, say something specific to yourself, or return to bed later in the day. Recording the effects of your response will equip you for subsequent mornings.
You can then make informed decisions based on what helped most, rather than what you may “feel like doing.”
3. Encourage yourself. As you discover what helps, create a morning story that will help you pursue what works most, such as replying to morning pain on a regular basis with a rhythmic mantra of “hot shower, hot shower, hot shower” or whatever improves your experience.
4. Schedule something motivating for each morning. This might be an exercise class, breakfast plan, home task, or other routine activity. It may be a relief not to experience pressure when you feel miserable, but without a reason to get up, it can be incredibly more difficult.
Consider the differences in how you experience mornings when you have to move versus those with little or nothing on the agenda. Wide-open days can be more challenging because, without distraction, pain has a way of filling the space. By planning something compelling each day, you are more like to get going before negative self-talk (such as “why bother?”) sets in.
5. Be mindful of the risk of over-scheduling. Distraction can provide a refuge from pain, but moderation and balance are key. Too much activity can activate a vicious cycle.
6. Don’t “should” yourself. Your usual may be usual for you – but that does not mean it is not hard. Be gentle with yourself. And even when you know how to feel better (or at least less bad), this does not mean that it is easy. Even individuals who have come to accept their situation have moments when they wish things were otherwise or mourn the loss of refreshing, restorative sleep.
Like someone suffering from depression (and pain and depression can coexist and reinforce each other), facing the day can be difficult. Yet, not doing so most often worsens both physical and emotional symptoms. As a psychotherapist, I have yet to hear from a client, “I stayed in bed for two days and boy did I feel better!”
And as someone with Mack Truck mornings, I too have learned that regardless of how desperately I hunker down in bed, I fare better by focusing on something constructive and moving ahead step-by-step with my day.
Practical Tips for Living with Fibromyalgia and Other Chronic Pains
[Tools & Ideas Mack Truck Club Members Might Want to Try]
Fibromyalgia and other chronic pain conditions present 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 [Work, School, Home]
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.
….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!). The products on the market are increasing exponentially, and are a far cry from the beta-version of Dragon Dictate, which I relied on back in 1994 to finish my dissertation.
Voice-activated dictation products have become mainstream, and their capabilities continue to increase. You can find products for MacIntosh or Windows, which enter text by voice (much in the way you would by typing). Other hand-held devices allow you to record data in a comfortable position and place, which you then upload as text later to your computer.
However, if you have been 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.
The training period for new products is becoming shorter and shorter. Plus, computers and other voice-activated devices “learn” to understand the user, just as the user learns to understand how to use it. These products accommodate to your pronunciation with practice (and correction), promising even the thickest of accents will eventually be recognizable. Plus, products are available in diverse languages as well.
In my case, a long break from the keyboard, aided by voice-activated software, along with exercises for my implicated muscles, has allowed me to resume typing by hand.
I now practice “mindful typing,” in which I type while calm and aware of my posture, my hand positioning, my speed, and my breath. But typing gently, I am able to accomplish a significant amount. Still, when I type “too much,” the pain creeps back in. A perk of voice software is that your computer recognizes it interchangeably with voice-entry. Thus you can decide to type by hand for a while and then voice it in for a while. See what works best for you.
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 $100 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. Voice-entered data are becoming more commonplace across platforms.
2. Telephone Headset
Holding a phone the old fashioned way can be excruciating. Headsets allow you to look chic like Madonna and get comfortable at the same time. On long calls you can engage in stretching or relax on the couch with a heat sack behind your neck, or whatever helps you feel your best. Cell phones have been offering headset versions and adaptations for some time now. 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!
Phone headsets vary significantly in type, quality, and price. You can look into turning an existing phone hands-free with a plug-in headset. Most phones have jacks for this purpose, including cordless & cellphones. Some you can strap onto a belt or pocket and there are wireless products.
Shop around and make sure to check return policies so that you can check the quality and comfort of the phone at home or work before committing to it.
3. Microwavable Heat Pack
Nothing soothes like a hot rice pack on the back of your neck or wherever you ache 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 ask 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 co-workers will desire one as well…
[Note: Those who are sensitive to hot weather may enjoy sacks or gel packs that can be chilled.]
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 who 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 doctors’ offices have massage therapists on staff – in this case their services are often covered by insurance.
• Check your phone book or the Net 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.
7. Daily Report Sheet
This has been incredibly important for my mental as well as physical well-being. So much so that it became the basis for my Paintracking book.
The fundamental idea of paintracking is to devise a format that you can use to track your day-to-day experience and learn what helps (and hurts) so that you can continue to improve.
I realized my daily memory is not very reliable. For example, 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 – so I devised an easy form that I filled 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 also included 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… The reports serve as a record of the many, many changes in medication and other strategies, and reveal trends that would otherwise be impossible to track. For example, it helped me realize that I have had significantly fewer bouts of depression than I used to.
Many people asked for a copy of my personal form, but I invariably told them it wouldn’t make sense to anyone else. In the book, I explain a systematic method people can use to develop a personally tailored tracking form.
Those with access to the Net may choose to use the free electronic Paintracker record-keeping, graphing and trending tool, which can be customized and modified to reflect what you think are the most important factors that influence how you feel.
Concentrate on a format that will be easy to do each and every day. Do not let the form become a burden in itself.
• If you do not use the Paintracker program but have access to a computer you may want to create a sort of computer 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 notations 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…
You may want to include an indicator of how you feel overall in your form. 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.
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 paper or electronic 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 likely 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, and 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.
– Deborah A Barrett, PhD
Note: This material is reproduced with kind permission from Dr. Deborah Barrett’s Paintracking site. ©Deborah Barrett, All Rights Reserved. It has not been reviewed by the FDA and is not meant to prevent, diagnose, treat or cure any condition, illness or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it with your professional healthcare team.