Coping with Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), and
Myalgic Encephalomyelitis (ME) is challenging because the symptoms are invisible and
chronic. A person can't simply "get over" FM and/or CFS/ME with the passage
of time or wishful thinking.
The boxes below contain a number of basic tips that might help you deal with your FM
and/or CFS/ME. Contact us if you have any questions, or
if you have a tip you'd like to add.
I suggest you visit our Coping Articles for articles about different
types of coping strategies.
Repeat To Yourself
Repeating things to yourself over and over again will keep thoughts
or ideas fresh in your mind. An example - as you're driving to the bank you repeat
to yourself, "bank, bank ...I'm going to the bank"
Write It Down
Whether you write in a calendar, in a notebook or on sticky pads,
writing it down can help. Another idea may be carrying a small notepad with you,
possibly in your pocket, to help you remember. I keep a small pad and pen in my
office, bedroom and kitchen. Then when I need to "remember" something it's handy. I
use a rolodex or address book for remembering the tons of passwords I need.
Pick Your Best Time
If there is something you need to do that requires concentration
and memory, such as balancing your checkbook or following a recipe, pick your best time
to do it.
Many people with FM and/or CFS/ME say they perform best early in the day. For others it
might be late in the day. Find the time of day that's best for you.
Depression, pain and sleep deprivation can influence your ability
to concentrate and remember. Getting your medical problems treated may indirectly help
Our brains must be fed in order to work properly; nutritious foods
filled with protein, vitamins, and minerals. Artificial sweeteners should be avoided as
they are known to interfere with brain functioning.
Daily Mental Exercises
The brain must be challenged every day in order to keep it in
good working order. Our modern world offers many creative and fun ways to improve
and maintain cognitive functioning in the brain.
Games like Brain Age or Brain Trainer can be played on computers, palm pilots or even
on cell phones. Mental activities like these help to increase cognitive abilities,
like remembering and reasoning. Video games involving intense hand-eye coordination,
like those offered with Xbox, Nintendo Wii, or Playstation 2, are a fun way to keep
the brain from stagnating, too.
My favorite game to unwind with is Book Worm Delux.
Stay Physically Active
Physical activity, in moderation, can increase your energy and help
lift your fibro fog. Speak to your doctor or physical therapist about an exercise
program that is right for you.
Explain your memory difficulties to family members and close
friends. Memory problems often result from stress. Getting a little understanding
from the ones you love may help. You may not believe it, but people not impacted
by FM and/or CFS/ME also have trouble remembering.
Keep It Quiet
A radio blasting from the next room, a TV competing for your
attention, or background conversation can distract your attention from the task at
hand. If possible, move to a quiet place and minimize distractions when you are
trying to remember or concentrate.
Sometimes memory problems can result from trying to do too much
in too short a period of time. Break up tasks, and don't take on more than you can
handle at once. Stress and fatigue will only make the situation worse.
Coping With Flares
When a flare is upon you, experts say you need to:
- Give Yourself A Break
As Murphy's Law predicts, flares often strike at the worst possible times. But no matter
what you have going on or how important it is, if you try to push through the pain,
you'll pay for it. Try to cut yourself some slack instead; ask for help from others,
extend deadlines if possible, and take care of your flare first. Do all you can to set
your stress level to "low" when your fibromyalgia kicks up.
- Just Say NO
When a flare hits, protecting your personal boundaries becomes even more critical. No,
you can't take on an extra project at work. No, you can't make 120 cookies for the bake
sale. No, you can't babysit the neighbor's kids. A firm but polite refusal, minus any
explanations or excuses, puts you in control of your schedule and gives you room to say
"yes" to what your body needs.
- Get Your ZZZ's
Experts at the Mayo Clinic suspect that sleep, or the lack of it, plays a key role in
fibromyalgia symptoms. This makes adequate rest especially important when your
fibromyalgia symptoms increase. Getting eight hours or more of rest has to be a top
priority. Try to go to bed and get up at the same time each day to help reset your
body's sleep cycle. Consider adding a short nap (even ten minutes can make a big
difference) to your day, if possible. One caveat: Don't nap so much during the day that
you're unable to sleep at night.
- Play Mind Games
Biofeedback, deep breathing, meditation, self-hypnosis, or even just distracting
yourself with a good book or some soothing music can help take your mind off the pain
and make coping with a flare more manageable.
- Pace Yourself
Mayo Clinic researchers have found that people with fibromyalgia who keep going, but
at a slower pace, weather a flare better than those who put a halt to activity
altogether. You need to know your limits and listen to your body. Remember, slow and
steady wins the race. Same goes for exercise. Gentle stretching, a leisurely walk, or
some easy yoga moves can keep you moving enough to help reduce the pain.
- Medicate Proactively
Following your medication schedule as prescribed can help you get pain under control
and keep it there. During a flare, it's better to take your pain medication like
clockwork - even if you feel as if the last dose is still working - rather than waiting
for pain to return full force before taking the next dose. At the same time, resist the
temptation to double up on meds or play pharmacist: Both over-the-counter and
prescription pain medications taken at levels just slightly above the recommended dose
can cause serious side effects, including liver or kidney failure. And some medications
(including herbal remedies) can be dangerous when combined. If your meds aren't cutting
it, call your doctor and ask for advice or some additional treatment options.
- Consider Your Alternatives
When it comes to managing a chronic condition like fibromyalgia, Western medicine may
not be the only path to take, say the experts at the National Fibromyalgia Association.
Acupuncture, chiropractic care, massage, biofeedback, and other therapies sometimes help
bring pain relief to those who aren't finding it through conventional means. Check out
providers carefully, ask for recommendations, make sure they're familiar with the
special needs of those with fibromyalgia, and keep your primary-care doctor in the loop
about what alternative approaches you're considering.
- Drink Water
Critical to all of your body's cellular functions, water is nature's perfect health
drink. Drinking eight to ten glasses per day will keep your body well hydrated and aid
your kidneys and liver in their important tasks of ridding your body of toxins. Being
properly hydrated also helps alleviate fatigue and aids your body in properly processing
medications. Just be sure to avoid alcohol, soda pop, caffeinated beverages, energy
drinks, and artificially sweetened beverages: They won't hydrate your body properly and
may increase the intensity of a flare.
- Talk About It
Coping with a chronic illness can be isolating, leading to depression, anxiety, and
other problems. Reach out to others for support and encouragement when pain levels rise.
Sometimes just talking about how you're feeling with people who understand and care
can help take the intensity out of a fibromyalgia flare.
If you're living with fibromyalgia, these simple steps can help to prevent a painful
Sharon Ostalecki, PhD, a nationally recognized fibromyalgia patient advocate suggests,
"Take 10 minutes every day to jot down things like what activities you did, what
medication you started, how well you slept, or if you ate something new. Journaling is
the key to discovering your flare triggers, so you can try to avoid them."
She notes that it can take up to 48 hours for an event to trigger a fibromyalgia
flare-up, and if it's not noted somewhere, you might not remember or recognize the
- Delegating and Saying NO
"Many people with fibromyalgia are perfectionists and like to do everything themselves,
from all the cleaning to all the cooking," says Ostalecki, who includes herself in this
category. "But you have to learn to let others do things for you because even mild
overexertion can lead to a severe flare-up."
- Stress Management
"Stress tightens you up, and when you have fibromyalgia, the muscles don't let go,"
Ostalecki explains. "Find something that reduces stress for you before it gets to that
painful point. I like listening to books on tape, for instance."
- Standing Tall
Learning and maintaining proper posture is crucial to managing fibromyalgia, because
posture errors that push the head too far forward or cause slouching can lead to muscle
fatigue, followed by increased tension and pain.
- Proper Diet
Protein intake is vital to those with fibromyalgia "because it's the only macronutrient
that builds and maintains muscle," says Ostalecki, who earned her doctorate in nutrition.
"A diet low in protein results in more nodules, more pain, and consequently more
Learn To Handle Demands On Your Time
Effectively managing your time requires learning to say
no effectively and using a "To Do" list.
Eliminate non-essential activities and ask loved ones for their help whenever possible.
Take comfort in knowing that many healthy people, not impacted by the symptoms of
FM and/or CFS/ME, don't make it through their "To Do" lists either!
Increase Your Self-Esteem
Memories of when you were able to function normally serve no
useful purpose and only diminish your self-esteem. Choose new activities that are
completely different from what you have done in the past, that are not related to your
career or social status, and that you can comfortably do with your FM and/or CFS/ME.
Take control of something - anything. The symptoms of FM and CFS/ME and their fallout can
cause you to feel out of control in many spheres of life. A sense of control is essential
to boosting self-esteem, but is obtained only after multiple successful experiences.
The good news is that control doesn't need to occur in every aspect of life. Control
in one area (e.g. church choir, being an involved parent, keeping a beautiful flower
garden) is sufficient to boost self-esteem.
Reach Out And Touch Someone
It can be all too easy for bed-bound people with FM and CFS/ME to feel cut off from the
world and even the rest of their household. One way to keep in contact with family members
in other parts of the house is to use Walkie talkies or a baby monitor.
To keep in touch with the outside world there's always the Internet. There are a number
of online communities set up for people with FM
and CFS/ME. If you're interests fall along the lines of gaming there are always cards
or board games for the Internet.
We all need to keep lists handy of the things that make us happy. One of the cruelties of
our condition is that when we need distractions most, we are least equipped to seek them
out. For this reason it's important to compile a list of our favorite activities when we
are feeling optimistic to be used when we most need them.
People with FM and/or CFS/ME often describe how even their worst pain can be put on a
back burner, so to speak, when they become engrossed in an activity. This is not only
a psychological but a physiological response: our brains can only process so much input
at once. When we are engrossed in a beautiful movie, talking to a good friend on the
phone, or listening to our favorite music while lying on a heating pad or in the bathtub,
we can trick our pain receptors into leaving us alone! Meanwhile improvements in spirit
have an added impact on our entire well-being. Laughter is great medicine.
Keep Hope Alive
There is so much room for hope. It has only been since the 1990's that our condition
has acquired any legitimacy from the medical community. We are in a far better position
than the generations before us who suffered without ever receiving validation. We know
much more about the important roles of exercise, medication, stretching, pacing
and meditation to bring relief and a sense of control. Furthermore, as medical
research increases, it is only a matter of time before better therapies (and perhaps
even a cure!) are introduced.
Just Say NO!
The first rule of thumb: Eliminate all activities you do not value
and that do not require your participation. Even though we may be "sick all the time,"
there is nothing wrong with declining invitations for health reasons. A polite,
"thanks for the invitation, but I am not feeling up to it" should suffice.
People cancel for many reasons. Aren't excessive pain and fatigue are reason enough? We
already experience substantial pain; why add to it by enduring irritating people
Reduce contact with individuals who drain you rather than add pleasure to your life.
Reserve your precious energy for only the most important tasks. Prioritize. When
possible, eliminate the "I should..." activities for the
"I want to..." variety. It's often well worth paying someone to carry out
strenuous chores, such as housecleaning and grocery shopping, to free ourselves for
more fulfilling activities.
When you can't "just say no," limit the time you spend on burdensome tasks. If you
must attend a social or work-related engagement, plan to arrive late and leave early.
It's likely you will have a better time, and in most cases, people won't notice.
For activities we choose to engage in, there are ways to make them
less stressful and more enjoyable. Fill your car or bag with creature comforts.
Extra medication, heat packs, pillows, earplugs and sunglasses can be real life savers.
Once you determine for yourself what works, keep a checklist handy when you are preparing
to go out. Think about the conditions of the place you are going: What is the
temperature? Are the chairs comfortable? How is the lighting?
Call ahead to inquire about the environment and whether any special arrangements can be
made. This will enable you to have a better time, and allow you to be as comfortable
If you are working full-time, switch to part-time or quit altogether, if possible. Get
out of the "rat race!" Most FM and CFS/ME sufferers are high-achieving, high-energy
people. We are "doers" who sometimes do too much! Don't overload yourself with
time commitments that will cause you stress later. Learn to say "NO" and allow yourself
to relax. When possible, delegate work!
Work Sitting Down
Get a stool to help with tasks like washing dishes and cooking. Sitting while you
wash dishes, chop vegetables, or cook takes less energy than standing to do the same
tasks. Make sure the stool you get is high enough to let you do these tasks without
Having a stool with arms and a back will help for added support. And don't forget one
with wheels! There's nothing easier than gliding across the room instead of walking.
Make some notes before you go to the doctor. Have a basic history of your health,
(previous conditions, duration, medications, etc.) Present your info with the time of
onset and symptoms. Since it changes all the time, make a short list of the ones that
come and go, and note anything you suspect may trigger them.
Finally, list your major concerns (chest pain, fatigue, headaches, etc.) because these
are the symptoms that are disabling you. At the bottom, give your date of birth,
medicines taken and any other pertinent information.
Take a pad and pen with you on your visit and be sure to take notes. If it's possible
to take a friend or family member along, do so. Having an extra pair of eyes and ears
can be helpful.
If you're having a good day make up some extra meals or make enough food for two or
three meals, freezing the rest in individual portions. Then on days when you can't cook,
you can just pull them out of the freezer and heat them up. This works best with things
like soups, stews and casseroles, but most anything can be frozen if you don't mind
the texture changing a bit.
Meals on Wheels
For many people with severe FM and/or CFS/ME, making a meal is hard to do. For those
who live alone it can be down right impossible. Look into programs like:
These places offer freshly prepared meals delivered right to your door.
For people in wheelchairs or for those who use walkers, shopping brings on a whole new
set of problems. Department stores jam clothing racks so close together it's impossible
to get near the clothes. And grocery stores never seem to have the items you need
within your reach.
One simple approach to solving the shopping problem is to shop online. Many fine stores
are now online and offer next day shipping if you're in a hurry. I buy most of my
clothing this way as it's impossible for me to get around in department stores. My
favorite stores are Lane Bryant, Blair, and Wal-Mart.
To simplify your grocery dilemma, many grocery stores now have delivery service. Check
your local grocery stores to see if they offer this service. Having your groceries
delivered saves you a lot of time and energy. If they don't offer this service, take
someone with you. They'll be able to reach the items you can't, and help to carry your
Another idea for grocery shopping is to use a motorized cart. Even if you aren't in
a wheelchair normally, taking advantage of this option can save you pain and agony later.
If you decide not to use a motorized cart, be sure to take breaks. Many grocery stores
now have a luncheon area where you can sit down and have coffee and a snack. This will
give you a chance to rest until you get your strength back.
Remember, if you're too tired when you get home to put away your groceries, just put
away the perishables. (meats and refrigerated items) You can always and leave the rest
of the items until you've regained your strength. Unless you have a great husband or
kids, trust me, they'll still be there!
Showering or Bathing
Showering is a major task for those of us with a chronic illness. It ranks right up
there on the energy scale with home renovation, plowing the field, and laying carpeting.
Ok, so it only seems that bad. (lol)
We all know that staying clean and presentable costs us much more in pain and fatigue
than our healthy counterparts. It's been years since I've been able to take a relaxing
soak in the tub, mainly because I can't get in and out of the tub without help. Somehow
I don't see my 85 old Mother hoisting me out of the tub. So that leaves me with the
You may not think you are "disabled" enough to warrant using a shower chair. However,
even if you're able to walk fine and can stand unaided, a shower chair will lengthen
your endurance for a relaxed, comfortable shower. Shower chairs can be large or small,
and can be bought sturdy enough to hold up to at least 450 pounds.
They can be purchased through those health product catalogs we all get in the mail,
like Dr. Leonard's catalog,
or they can be purchased at your nearby living aids store. I recommend checking out
yard sales, flea markets, or Good Will stores first to see if you can get one cheaper.
The average retail price for basic shower chairs is around $40.00.
Another energy saving idea is a dual shower head that includes a hand-held shower. This
way you can stand under the shower spray for all-over rinsing, train the spray on
a particular set of muscles that ache, or you can hold the spray while seated and direct
it where you need it. These basic dual heads range in cost from $20-30, and are available
at your local home improvement or Wal-Mart store.
Cleaning the house is a huge task no matter how you look at it. But if you break it up
into smaller projects it's easier to get through. Instead of cleaning the whole house in
one day, break it up into one room a day. Find a day when your pain levels are tolerable
and start with light cleaning like dusting.
One cleaning item I can't live without is Swiffer dusters. They really do "trap dust
and dirt like a magnet". One swish of my magic swiffer wand and dust is gone! They
even have swiffers on a long handle to alleviate bending and stretching. Swiffer
sweepers work wonders on floors too.
If you have children, enlist their help with heavier cleaning like running the vacuum.
Even smaller children can help by bending and picking up things from lower surfaces or
items on the floor. Let's face it, they can do it much easier than we can. Never be
afraid to delegate jobs.
Traveling when you're disabled with a chronic illness is challenging at best. Here are
a few tips to make your vacation more relaxed.
Put your med's in a zip-lock bag. I find it's easier if I separate my daytime med's and
night time med's into different bags. Label them accordingly, this way they'll be right
at your fingertips when you need them.
If you take anything that is absolutely essential; such as heart medication, insulin,
etc., bring extra prescriptions in case your medication is stolen, lost, etc. If you
require anything that might be suspicious to security, such as needles, have a note from
your doctor stating the necessity of these items.
Shampoos, Soaps, Lotions -
Buy travel size items before you leave home or purchase them after you arrive. Many
hotels now provide shampoos, conditioners and soaps, along with blow dryers. If your
health condition requires special products, buy small plastic bottles and pour your
items into them. Remember to put all liquids in zip-lock bags so they won't explode in
your carry-on and make a mess.
Thermal Patches -
Thermal patches weigh less and are more convenient than pain-relieving gels or creams,
plus they smell a lot better too. Be sure to have a supply of these on hand for those
long plane or car trips.
The less you have to fuss over your clothes, the better. Leave items that wrinkle easily
at home. Many hotels now have irons in the room, but do you really want to be ironing
on vacation? Make sure you leave some empty space in your suitcase for shopping
and souvenirs. When I travel, I pack a small duffel bag in my suitcase. Then when I
come home I have a bag all ready for my souvenirs, etc.
On An Airplane -
Most airlines allow early seating for people with children or people who need more
time boarding. If you're disabled with a chronic illness this is an ideal time for
you to board the plane.
Do not sit in an exit row unless you are physically capable of opening the emergency
door and assisting other passengers. If you're inadvertently seated in an exit row,
ask to change your seat before the plane takes off.
Be sure to ask for a window seat when booking your flight. This will allow you to keep
your seat while in flight. There's nothing more tiring and painful than getting up and
down to let people in and out of their seats.
If you require carry-on luggage, put it under the seat in front of you. If you have
someone with you, have them store it in the over-head compartment for you. Don't try
to lift anything over your head without help.
If you're a diabetic be sure to bring your own snack. Here are some ideas for
- orange and grapefruit segments
- granola bar
If you require gluten-free meals bring your own food. Here are some ideas for
hassle-free, gluten-free travel foods:
- organic jerky
- small bags of baking nuts
- plain corn chips
- baby carrots
- canned peaches or pineapple with pull-top lids
- small cans of tuna with pull-top lids.
Hotels and Motels -
Request rooms on ground floors or near elevators so you don't have to haul suitcases
up stairs. Don't forget to request a non-smoking room if you are allergic or sensitive
to smoke and odors.
You might consider staying someplace with a pool, hot tub and/or exercise facility.
These come in handy if you've been sitting in planes or cars all day and need to rid
yourself of stiffness and soreness.
Tips on Finding a Good Wheelchair Accessible Hotel/Motel
Finding a good wheelchair accessible hotel can be a daunting task. With so many places
to choose from disabled travelers need a quick way to compare hotels and find the one
that can accommodate their special needs. Following the few simple trip planning steps
below can make the difference between a great vacation or a frustrating trip for a
Narrow Your List of Hotels/Motels -
While wheelchair accessibility is the top priority for a disabled traveler. Many
travel agents and travel reservation sites forget that a person with a disability has
other needs too. In addition to good wheelchair access, disabled travelers are also
interested in things such as a swimming pool, restaurants in the hotel, pet
accommodation, and internet access.
WhenWeTravel is a web site
offering a Wheelchair Accessible Hotel Search to help disabled people narrow the list
of hotels to the ones with all their special needs. Travelers can use it to pick
a destination and check off all the amenities they require. They currently have a list
of over 37,000 wheelchair accessible hotels from destinations all around the world.
A disabled traveler can use the hotel search to get a narrow list of hotels to be used
for calling the hotel directly.
Call The Hotel/Motel Directly and Ask
Some Questions -
By asking a few questions a disabled traveler can quickly determine if the hotel
is disability friendly.
Make this the FIRST QUESTION asked: Does the hotel provide any special disability
services? Let the hotel staff explain what they have to offer. Their response
will immediately indicate their experience and desire in assisting disabled travelers.
What floor are the wheelchair accessible rooms on? It is important to be near the
first floor in case of an emergency where the elevators are not in service.
Can the beds and other furniture be moved in order to make the room more comfortable
Are any of the rooms equipped with waterbeds or sleep number beds?
Does the hotel provide a wheelchair accessible shuttle to nearby tourist attractions
and public transportation?
Is disabled or handicap parking available for your car or van?
Listen "between the lines" -
A disabled traveler should be listening for clues that indicate the hotel has a
good understanding of the difficulties faced by an individual with a disability. If
the reservation desk at the hotel is knowledgeable about ADA requirements such as wheel
chair accessible passages, counter heights, door hardware, bathroom fixtures, and roll
in showers there is a good chance they frequently serve disabled guests. However, be
wary of a hotel manger that seems to promise too much. If the hotel seems too good to
be true...it probably is.
No Scents Please
If you are sensitive to chemicals, make sure that you, and if necessary those
around you, stick to unscented, non-aerosol deodorants, toiletries, and cleaning
You can always get a letter from your doctor stating that you have allergies or
chemical sensitivities and listing problem substances. This can be photocopied and
sent in advance to people who are visiting your house, asking them to avoid these things.
Keep a handout of your medical history, your known allergies, what drugs you are taking
etc. I keep all my information in a small address type book, along with my
prescriptions. That way all the information is right at my fingertips.
Many sunglasses let in light at the sides; if this bothers you look for a "wraparound"
style. Prescription sunglasses can be obtained. There are also wrap-around sunglasses
that fit between your glasses and eyes (ask an optician), and others which will go over
the top of your glasses.
Several lamps with low watt bulbs are easier on the eyes than one bright one. Dimmer
switches and different colored bulbs may also be worth a try. Bulbs can be bought with
a silver coating, which reflects the light upwards so it is more dispersed. If your
light sensitivity is severe, you may find indirect light best, perhaps from an electric
night light, candle, torch or illuminated globe.
Blinds reduce the glare of the sun without making the room dark. Blackout curtain
lining and blackout blinds are available. Some specialist blackout blinds are sealed
at the edges and can be used to make the room pitch black.
Split tasks into small manageable chunks and do a bit at a time. Think about how
each activity might be done in a more energy efficient way; for example many things
such as ironing and brushing your teeth can be done sitting rather than standing.
Decide which jobs actually need to be done and do any vital things first in case you
run out of steam. Try to leave more than enough time and energy to complete each
task. Hunting for scissors or keys wastes valuable energy, so have special places for
these items and try to keep organized. I keep a small dish on the table by my garage
door where I leave my keys.
Use equipment that will save your energy, such as a wheelchair. Use other people's energy
and try not to feel shy about asking for help. If finance permits, hire people to do
domestic jobs. You can be selective, for example hire someone to dig the garden but you
may be able to do some of the lighter work, such as putting out bedding plants.
Alternate activity and rest. You may well find that you can do more of if you do an
activity in short bursts. If it's hard to make yourself stop, try using a countdown timer
or alarm clock. This will remind you to rest and may help you to avoid doing too
much. Alternate different types of activity, particularly physical and mental tasks,
so as not to overuse your brain, legs, arms, etc.
Many people find it helpful to keep a diary of their activities. Use it to learn about
your individual illness, how much you are able to do, and what things make your FM
and/or CFS/ME worse. Listen to your body and respect what it is trying to tell you.
Never be afraid to decline an invitation or visitor or to refuse a request if you are
not feeling well enough. Try to be flexible and change plans according to how well you
are. Plan big events carefully, preparing things in advance so that you can manage
your illness as well as possible. Sometimes it is worth feeling really ill as a result
of doing too much, in order to do something special. It is up to you (and nobody else)
to decide whether a certain activity is worth the recovery period. Learn to be
assertive about your needs. It is easier for those around you if you recognize and
respond when you need a rest.
Energy can be thought of as being a bit like money; it is possible to go into
"energy debt" but you will have to pay it back with interest and will feel really
ill. Sometimes this will be unavoidable, but it is a good idea to live within your
"energy budget" most of the time. Continually spending more energy than is available
is a common cause of FM and CFS/ME relapses. Steadily increasing activity regardless
of symptoms can cause long-term deterioration.
When trying out a new activity, start by doing it for a short time that you know you
can manage. If it is OK, experiment with doing it for a bit longer next time,
cautiously testing your limits. Be realistic about your limitations and don't
over-estimate what you can do. It is sometimes recommended that people with FM and/or
CFS/ME should do only about 80% of what they think they can do. This leaves a bit of
leeway for unpredictability and may actually give the body a better chance of
improving. Although pacing is very important for living with FM and/or CFS/ME, no one
paces well all the time - don't be too hard on yourself when you don't manage it as
well as you had hoped.
Overcoming insomnia greatly improves FM and CFS/ME symptoms. Did you know that healthy
people who volunteered for sleep deprivation experiments actually developed FM-like
symptoms! That's why it is so important to try to get as much sleep as possible.
One treatment for getting sleep is the use of Melatonin. This medication is now being
used for restorative sleep at night with no "hangover" the next day. Melatonin has
been called the body's own natural sleeping pill. It plays a key role in the sleep
cycle by helping you fall asleep. Low melatonin levels can cause sleep-onset insomnia.
For more information about Melatonin, including side effects, warning and precautions,
Remember: If you use natural products, get them from a reliable source and be sure
to inform your doctor of what you're taking. Many
supplements, natural products, and vitamins don't interact well with prescription
Tips for a Good Night's Sleep
- Stick to a Schedule:
You've heard it time and time again – wake up and go to bed at the same time every day,
even on weekends. Why is this so important? It all relates to circadian rhythms. "Sleep
is a system where our bodies regulate automatically based on our daily patterns" says
Sonia Ancoli-Israel, Ph.D., a professor of psychiatry at the University of California at
San Diego and a spokesperson for the National Sleep Foundation. "If you sleep in, it
might affect your ability to fall asleep the next night, since you have to be awake for
a certain amount of time before you'll be sleepy enough to go to sleep again."
- Pick a Relaxation Ritual
Engaging in a relaxing activity, preferably with dim lighting, helps separate sleeping
times from times that elicit excitement, stress, or anxiety. Instead of trying to
balance your budget or solve big family dilemmas right before bedtime, turn to soothing
activities like taking a warm bath, meditating, or reading. It doesn't matter what you
do, claims Ancoli-Israel, as long as it relaxes you – just stay away from bright light
because it signals the brain that it's time to awaken.
- Turn Everything Off
If you can view a clock from your bed, move it. In fact, according to Ancoli-Israel,
getting rid of the clock is effective in 90 percent of people who have difficulty
sleeping. "If you've just woken up and you want to know what time it is, you have to
take yourself from transitional sleep to full awakening – and you've then made it
harder to fall back to sleep," says Ancoli-Israel. "Get rid of the clock and don't even
open your eyes if you awaken in the middle of the night, because that will take you
out of that transitional sleep."
- Create a Safe Haven
Sleeping soundly requires the right environment – dark, quiet, comfortable, and cool.
It helps if distractions are minimal, too, including exposure to light, uncomfortable
temperatures, or poor air circulation, not to mention a spouse's loud snoring. While
some potential sleep saboteurs are beyond your control, blackout shades, earplugs,
humidifiers, and fans can help block out the major offenders.
- Get Comfy
When it comes to sleep, comfort is key. If you have been lying on the same mattress
for years on end, chances are it may have exceeded its life expectancy (most "good"
mattresses survive for about 10 years). Make sure your mattress is comfortable you're
your sheets made from a high thread count. Encasing yourself in comfort will make for
more peaceful slumber. Ancoli-Israel points out that brands and prices of these items -
whether sheets, pillows, other bedding, or a mattress - are irrelevant. It's how they
make you feel that matters most.
- Watch What (and When) You Eat
Don't eat anything two to three hours before your regular bedtime. The same rule
applies to liquids. You don't want to disrupt your slumber because of the need for a
bathroom trip. Avoid eating a heavy meal too close to bedtime, or spicy foods, which
may cause heartburn and make it difficult to fall asleep. But you don't want to go to
bed hungry, either. "Again, it's doing what makes you feel comfortable," says
Ancoli-Israel. Then you'll rest easy.
- Set the Stage for Sleep
Keep work, computers, TVs, and other distractions out of the bedroom. Reserving the
bedroom for sleep and sex actually helps strengthen the association between bed and
sleep. Reading in bed, for example, is fine if it helps you fall asleep. "It's very
individual," says Ancoli-Israel. "What works for one person may not work for another."
She even suggests taking sex out of the bedroom if it isn't relaxing for you and
doesn't promote sleep. Bottom line: When you're in the bedroom, engage in activities
that help you relax.
- Use Your Imagination
Your typical waking and sleeping times are programmed in your subconscious mind. Instead
of counting sheep, try resetting the program. "Both imagery and hypnosis bring your
brain into a deeply relaxed state," explains Donna Fremon-Powell, aertified guided
imagery therapist, a certified hypnotherapist. "In this alpha-brainwave state, the
subconscious mind is more willing to accept beneficial suggestions, such as 'You sleep
soundly through the night and wake fully refreshed and alert in the morning.'" Hypnosis
and guided imagery - even listening to an imagery CD as you fall asleep - can help you
change negative sleeping patterns and achieve more restful slumber.
- Enjoy the Daylight
The body's natural sleep hormone, melatonin, is secreted in darkness and inhibited in
light. So getting sufficient exposure to light during the day can help you stay awake
and alert. By the same token, keeping your bedroom as dark as possible at night can
help promote the production of melatonin and the onset of sleep. And while you can
buy melatonin over the counter as a supplement, Ancoli-Israel claims it isn't the same
as the melatonin produced by the brain. Still, 1 to 3 mg of melatonin taken half an
hour before bed has proven helpful for some individuals, but Ancoli-Israel claims
there's no scientific evidence to support the use of melatonin as a sleep aid.
- Write It Down
Instead of ruminating over the day's dramas right before bed, set aside a worry time
earlier in the day, suggests Ancoli-Israel. "It sounds silly, but if you take 10 or 15
minutes to sit and worry during the day (with the Blackberry and beeper off), it frees
you from having to think about those concerns when you get in bed at night." If your
sleep problems persist, keep a sleep diary, noting the type of problems you're
experiencing and when they occur. It's a useful tool to have when you talk to your
12 Tips for a Good Night's Sleep, Copyright © 2012 Everyday Health, Inc.
One tip that I learned early on is before getting out of bed in the morning, begin a
stretching routine with the hands, fingers, arms, progressing thoughout. By doing this
you won't feel like one of the "tin people" when you get out of bed.
This tip was sent in by Monique Levesque. Thanks so much Monique!
It's true. Music really does "soothe the savage beast". I've found that listening to
music can help transport me to a better place. There are the love songs that remind you
of the person you're in love with. Songs with a upbeat tempo that make you tap your
toes, and then there is the dance type music.
There are many places online to sample music. Try a few out, making a cd of each music
type. Then you'll have music for whatever mood you're in. Whatever your music
preference, there is a song to help soothe the beast inside you. If only for a brief
Change Negative Thinking
Depression puts a negative spin on everything, including the way you see yourself,
the situations you encounter, and your expectations for the future. But while
depression causes negative thinking, negative thinking also triggers and fuels
depression, causing a vicious cycle that's tough to escape. Making it even tougher is
the fact that our negative thoughts can be so automatic that we're not even aware of them
or that we can choose to control them.
Here are some ways to change negative thinking for the better:
Think outside yourself -
Ask yourself if you'd say what you're thinking about yourself to someone else. If not,
stop being so hard on yourself. Think about less harsh statements that offer more
Keep a "negative thought log" -
Whenever you experience a negative thought, jot down the thought and what triggered it
in a notebook. Review your log when you're in a good mood. Consider if the negativity
was truly warranted. For a second opinion, you can also ask a friend or therapist to go
over your log with you.
Replace negatives with positives -
Review your negative thought log. Then, for each negative thought, write down
something positive. For instance, "My boss hates me. She gave me this difficult report
to complete" could be replaced with, "My boss must have a lot of faith in me to
give me so much responsibility."
Socialize with positive people -
Notice how people who always look on the bright side deal with challenges, even minor
ones, like not being able to find a parking space. Then consider how you would react in
the same situation. Even if you have to pretend, try to adopt their optimism and
persistence in the face of difficulty.
Talk It Over
As human beings, we have a biological need to feel connected to others. Depressed people
need the support of other people even more. On your own, it's difficult to
maintain perspective and sustain the effort required to succeed in treatment. But when
you're depressed, retreating into your shell is more appealing than socializing. The
problem is that social isolation fuels depression and makes it even worse. When
they're alone, depressed people tend to revert to negative, unrealistic thinking, which
only exacerbates feelings of worthlessness, shame, and alienation.
Turn to trusted friends and family members -
In your depressed state, you've probably retreated from your most treasured
relationships. However, it is these relationships that can get you through this tough
time. Communicate your needs to the people you love and trust. Ask for help when you need
Join a support group -
Find a group of other people working toward depression recovery. Being with others in
the same boat can go a long way in reducing your sense of aloneness. You can also
encourage each other, give and receive advice on how to cope, and share your experiences.
To find a list of online support groups,
click here. For
a worldwide listing of support groups that meet in-person,
See a therapist -
Therapy can help keep you on track with depression recovery. A supportive,
thoughtful therapist can help you work through issues the depression has caused,
change negative ways of thinking, and explore the root of your depression. We all
need the help of someone to talk to from time to time.
Healthy Lifestyle Habits
There is an undeniable link between physical and mental health. Depression can cause
physical symptoms such as aches and pains, frequent illness, weight loss or gain,
and insomnia. But on the flip side, making healthy lifestyle choices can dramatically
improve your mood.
- Regular exercise or light stretching
- Healthy sleep habits
- Daily sunlight
- A nutritious diet
- Avoiding alcohol and drugs
Sex & FM and/or CFS/ME
A common problem among people with a chronic illness like FM and CFS/ME is a loss of
their desire for sex. A frequent complaint from their partner is that their lover no
longer wants sex. It can sometimes be the other way around. This creates a lot of strain
and can erode the quality of the relationship and obliterate intimacy.
Honest communication is essential. Communicate with your partner and encourage your
partner to communicate with you. Your partner may be afraid because they may feel
selfish for having needs when you are sick. They may be afraid they will hurt
you or exacerbate your symptoms. They may pretend that sex is not important to
them to make you feel better. Encourage your partner to talk you about it honestly.
Sex doesn't mean you have to have intercourse; it encompasses a great deal more than
that. So if intercourse is not possible or desirable for you, it is still possible
to be a healthy sexual being and enjoy your sexuality to the fullest. Try
different positions if one is painful; try different kinds of sex if one form is
not possible. Try placing pillows or padding around the body or under joints may
ease pain during sex. You may achieve additional relief by taking a warm shower before
sexual activity or using a waterbed to relieve pressure on painful joints. Massage
with oils helps to relax you and get you in the mood also.
If you can't have intercourse then try manual or oral. You can masturbate your lover
or masturbate for them. Try different times of the day. Perhaps you have one time of
the day when you feel better than other times of the day. Maybe in the morning or evening
or before you eat. Perhaps you need to schedule your sex in that time period that you
feel better. You can lay close with your lover and coach them along with hot, sexy
talk while they masturbate themselves.
Not only is sex an important part of who we are and of our relationship, but it can
also benefit your illness. Sex is a great pain reliever, because of the endorphins
released when orgasm occurs. The exchange of energy when being sexually intimate can
also provide pain relief. By becoming completely absorbed in the moment and the act
of lovemaking you can temporarily transcend your pain and symptoms. The act of sex
can divert your attention away from your pain and symptoms.
Standing is one of the hardest things on my FM and CFS/ME. I've found that using a
crock-pot makes my life so much easier. All you have to do is throw your ingredients
in the crock-pot and turn it on. Just give the pot an occasional stir and that's all
there is to it. This not only makes cooking a meal so much easier, but it tastes good
Another way to relieve the pain of standing is the use of a hand-held shower. This lets
you shower sitting down which can be a godsend when you're short on either energy or
balance! They're also great for bathing pets too.
Bath boards affix on the top of the bathtub across its width to provide a sitting
surface level with the rim. They are usually used with a hand-held shower attachment so
care needs to be taken that users do not scald themselves if there is no supply of water
at a constant temperature. Care also needs to be taken in an unheated bathroom that the
user does not become too cold. Bath boards are a great place to prop a book while you
soak, or just a handy place to keep your shampoo and body soap.
Kitchen timers are great for helping you to remembering things. Get one that is small
enough for you to carry in a pocket, or purse. Another thing I do is to write a note
saying what I'm timing and stick it to the timer. You can time all sorts of things.
I often wonder how I ever managed before the invention of cordless phones or cell
phones. I have a phone that is small enough to carry in my pocket. Then when I get into
a comfortable position and the phone rings, it's no big deal to answer it!
Having an electric toothbrush makes it about a hundred times easier to brush your
teeth! Instead of a million back and forward motions you just have to move it around to
touch every surface.
Another use I've found for the electric toothbrush is for cleaning the grout in your
shower or tub area. Of course you want to make sure you wait until the brush is no longer
effective for your teeth before using it to clean the grout in your tub or shower! (lol)
Yes, I know sports are the last thing on your mind, but did you realize that a sports
bottle will let you drink without sitting up? For those of us bedridden some or all of
the time, this can be another thing to help save a little bit of energy.
I've found that a pill box with sections for each day of the week and each time of the
day you need to take pills can be invaluable. These are especially useful if you suffer
from brain-fog and sometimes can't remember if you've taken your pills. I have one with
a built-in timer. This reminds me to get my pills on time without forgetting.
Can & Bottle Openers
Electric can openers are a lifesaver in the kitchen. It's another one of those items
I wonder how I ever lived without. I especially miss them during hurricane season when
we have no power for days or weeks on end.
For opening bottle and jars, I've found those rubber shelf liners to be indispensable.
You know the type, they're made of a sticky mesh-type fabric. Not only are they good
for lining shelves, they're terrific for opening any type of bottle or jar effortlessly.
To make them easier to use I cut them into little rounds or squares.
There are many different variations of reachers and pick-up sticks. Some tools come
with a trigger-like grip, while other tools come with clamping jaws which can be used to
grip items. They're handy for many purposes: reaching things off of store shelves,
picking up clothing or toys from the floor, grabbing the newspaper on the driveway.
Anything that requires you to bend or stretch can be made easier by having one of
Many of us have limited strength in our arms and torsos making it difficult to use
manual wheelchairs. That's when electric wheelchairs, power chairs and electric carts
become life savers. They enable you to retain your independence by getting you out of
the house effortlessly.
With your doctor's approval, U. S. Medicare should cover 80% of your wheelchair cost.
Your supplemental or secondary insurance often pays any remaining amount that Medicare
did not cover. If Medicare is your secondary insurance carrier, you must first file a
claim with your primary insurance carrier, wait until you are reimbursed by them, and
then file with Medicare with any remaining balance.
There are many types of walkers on the market today. There are the four legged standard
ones made out of aluminum, the four legged rolling ones with seats, and the three
I have found the four legged rolling ones with seats to be the most effective. They
most always come with a handy little storage area to put your hot or cold packs in or
your purse, etc. The seat enables you to sit when you've run out of energy. You'll
never again have to wonder where to sit and rest up.
In most cases U. S. Medicare will cover most of the cost of a walker with your
doctor's prescription. Your supplemental or secondary insurance often pays any
remaining amount that Medicare did not cover.
Keeping A Pain Diary
You're the only one who knows how much pain you are feeling. When your doctor asks you
about the pain, you probably won't remember how hard some days were. You may not remember
how bad the pain was. The diary is to help you describe what is happening to you while
it is happening. It will be very helpful to your doctor to know when the pain was bad,
what made you feel better, and what didn't make you feel better.
Don't worry about how much to write. You don't even have to write sentences. Just write
the words that describe how you are feeling. Don't worry if you miss a day. Do it when
you can. If thinking about your pain every day is too hard, put the diary away for a
few days and go back to it when you are ready. This is your diary. Write when you can
for as many days as you can and then stop.
Click To Print Out A Pain Diary Log
Keeping A Sleep Diary
Tracking sleep patterns with a sleep diary helps people identify possible causes of
sleep disruptions. A sleep diary is a written record of sleep times, awakenings and
factors that help or hinder getting to sleep. Keeping a sleep diary can improve sleep
patterns and may even help detect more serious health problems of which lack of sleep is
only a symptom.
Obtaining a sleep history can be helpful in successfully treating insomnia, snoring,
nightmares, anxiety and other conditions. Keeping a detailed sleep log can help identify
disturbances that prevent you from getting enough sleep, including stress or poor sleep
hygiene (such as reading in bed or remaining in bed when not sleepy).
Sleep diaries provide a first step in identifying and breaking habits that cause sleep
deprivation. Therapists may also suggest keeping a sleep log to track emotional issues
that may cause insomnia.
Click To Print Out A Sleep Diary Log