FM/CFS/ME RESOURCES - Coping Tips

 

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COPING TIPS Coping Tips

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.

Activities Cognitive Tips Depression


Gadgets Holiday Tips Practical Tips


Keeping Diaries

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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"

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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.

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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.

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Get Treatment

Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

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Proper Nutrition

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.

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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.

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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.

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Explain Yourself

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.

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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.

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Go Slowly

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.

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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.

Source:

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Preventing Flares

If you're living with fibromyalgia, these simple steps can help to prevent a painful fibromyalgia flare.

  • Journaling
    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 correlation.


  • 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 exhaustion."

Source:

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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!

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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.

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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.

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Stockpile Distractions

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.

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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.

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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 or activities?

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.

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Be Prepared

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 as possible.

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Reduce Stress

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!

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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 bending.

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.

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Doctor Visits

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.

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Cooking

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.

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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.

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Shopping

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 bags.

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!

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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 shower.

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.

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Cleaning

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.

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Traveling Tips

Traveling when you're disabled with a chronic illness is challenging at best. Here are a few tips to make your vacation more relaxed.

Medications -
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.

Packing -
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.

    Seating -
    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.

    Snacks -
    If you're a diabetic be sure to bring your own snack. Here are some ideas for diabetic snacks:

    • orange and grapefruit segments
    • raisins
    • granola bar
    • popcorn

    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
    • apples
    • 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.

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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 disabled person.

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 and accessible?

  • 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.

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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 products.

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.

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Emergencies

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.

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Light Sensitivity

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.

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Pacing Yourself

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.

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Sleep

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, CLICK HERE.

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 medications!


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 doctor.

Source:
12 Tips for a Good Night's Sleep, Copyright © 2012 Everyday Health, Inc.

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Waking

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!

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Music

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 moment.

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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 realistic descriptions.

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.

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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 it.

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, click here.

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.

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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

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Sex & FM and/or CFS/ME Mature Theme

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.

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Crock-Pot

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 too!

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Hand-Held Shower

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.

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Bath Boards

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.

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Kitchen Timer

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.

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Cordless Phone

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!

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Electric Toothbrush

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)

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Sports Bottles

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.

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Pill Box

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.

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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.

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Reachers

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 these tools.

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Electric Wheelchairs

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.

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Walkers

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 legged walkers.

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.

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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

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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

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