Friday, April 20, 2012




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.

Here are  a number of basic tips that might help you deal with your FM and/or CFS/ME.

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.

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.

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.

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 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.

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.

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.

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.

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.

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 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.

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.

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!

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.

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.

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:

Meals on Wheels
Meal Call
City Meals
Meal Bistro
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 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!

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.

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 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
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 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.

Are the rooms ADA (Americans with Disability Act Accessibility Guidelines for Buildings and Facilities) compliant?

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 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 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.

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.

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.

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.

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!

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 moment.

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.

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.

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 too!

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.

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.

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.

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!

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)

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.

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.

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 these tools.

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.

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.


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is an illness characterised by exhaustion and many other symptoms. It can strike at any age and can affect children as well as adults. Victoria alone could have at least 35,000 people who suffer from ME/CFS.

Myalgic Encephalomyelitis means pain in the muscles and inflammation in the brain and spinal cord. Onset of ME/CFS may be sudden or slow and may follow viral infections, toxic exposure, trauma or other events. There can be various levels of severity of this condition. Some people can go to work or can manage moderate levels of activity, while others are housebound or bedridden.

The course of illness is difficult to predict. Some people recover quite well over a long time. Some people remain about the same, while some suffer relapses and others get worse.

A variety of symptoms
The symptoms for which ME/CFS is best known are persistent weakness and exhaustion. The distinguishing feature of the condition is a type of exhaustion known as post-exertional malaise or ‘payback’. This includes abnormal exhaustion after any form of exertion and a worsening of other symptoms. The response may be delayed, perhaps beginning after 24 hours.

It can take an unusually long time to recover from this type of exhaustion. Activities that were once taken for granted now take an enormous toll on a person’s health. For example, your normal walk, which caused no fatigue before, is followed by unusual tiredness that takes longer than usual to go away.

Other symptoms include:
Cognitive (thinking and memory-related) difficulties and other neurological problems
Disrupted sleep
A drop in blood pressure upon standing (orthostatic hypotension)
Increased heart rate upon standing (orthostatic tachycardia)
Shortness of breath with exertion
Muscle twitching and tingling
Allergies and/or sensitivities to light, odours, touch, sound, foods, chemicals and medications
Gastrointestinal and urinary problems
Sore throat, tender lymph nodes and a flu-like feeling
Marked weight change – extreme loss or gain
Inability to cope with temperature changes.
Symptoms may vary even over a short time.

The cause is unknown
A single cause for ME/CFS and its ongoing effects has not been found, but research indicates problems in several areas that may be related to this condition:
Immune, neurological and hormonal responses
Viral or other infections
Blood pressure, circulatory and cardiac abnormalities
Digestive tract disturbances
Genetic factors
Biochemical abnormalities.
Without a known cause or cure, prevention is impossible.

If you are fighting this debilitating illness my heart goes out to you <3 You are in my thoughts and prayers... It is a tough rough but friends can make it that bit better, so very thankful for my computer and all of my beautiful friends within..... Much love, respect, hugs and blessings Jayde Dow...

No diagnostic test is available
Currently there is no single test to accurately diagnose ME/CFS. A diagnosis is made by excluding all other illnesses after six months of continuing symptoms. However, while routine medical tests may be in the normal range, additional tests may show abnormalities in many people with ME/CFS. These tests are generally done by doctors who specialise in managing this condition.

Impact of ME/CFS
Disability means that some people with ME/CFS are too ill to work, study or socialise. A person’s finances may also be affected. A lack of community understanding of the difference between normal tiredness and the extreme exhaustion of ME/CFS, and the absence of a specific diagnostic test, add to the person’s difficulties and often prevent a proper diagnosis.

The effects of this condition on a person’s life and a lack of support and recognition for what they are experiencing can lead to depression in some people with ME/CFS.

Where to get help
Your doctor
ME/CFS Australia (Victoria) Tel. (03) 9791 3100 – for information, support groups, self-help courses and information on doctors and specialists who can support people with ME/CFS
Things to remember
The most common symptom of ME/CFS is an overwhelming, persistent lack of energy and difficulty in recovering from exertion.
The cause is unknown but research is discovering a large range of physical abnormalities in those affected.
There is no cure but some treatments may provide relief to some people with ME/CFS.
It is important to educate yourself, obtain support and manage the illness with the help of a doctor experienced in managing this condition.
Listen to your body and keep activity within your limits to avoid relapse.

Wednesday, April 18, 2012


The following Frequently Asked Questions and the answers are for the Facet Joint Injection. It is one of the common procedures performed in this pain clinic. The following material is given as general information only, and is not to be considered as medical advice or consultation. The following material is given as general information only, and is not to be considered as medical advice or consultation.

What is a Facet Joint Injection?

Facet Joint Injection is an injection of long lasting steroid ("cortisone") in the Facet joints – which are located in the back area, as a part of the bony structure.

What is the purpose of it?

The steroid injected reduces the inflammation and/or swelling of tissue in the joint space. This may in turn reduce pain, and other symptoms caused by inflammation / irritation of the joint and surrounding structures.

How long does the injection take?

The actual injection takes only a few minutes.

What is actually injected?

The injection consists of a mixture of local anesthetic (like lidocaine or bupivacaine) and the steroid medication (triamcinolone – Aristocort® or methylprednisolone – Depo-medrol®).

Will the injection(s) hurt?

The procedure involves inserting a needle through skin and deeper tissues (like a "tetanus shot"). So, there is some discomfort involved. However, we numb the skin and deeper tissues with a local anesthetic using a very thin needle prior to inserting the needle into the joint. Most of the patients also receive intravenous sedation and analgesia, which makes the procedure easy to tolerate.

Will I be "put out" for this procedure?

No. This procedure is done under local anesthesia. Most of the patients also receive intravenous sedation and analgesia, which makes the procedure easy to tolerate. The amount of sedation given generally depends upon the patient tolerance.

How is the injection performed?

It is done either with the patient lying on the stomach, or for the cervical (neck area) injections – in sitting position, under x-ray control. The patients are monitored with EKG, blood pressure cuff and blood oxygen-monitoring device. The skin in the back is cleaned with antiseptic solution and then the injection is carried out. After the injection, you are placed on your back or on your side.

What should I expect after the injection?

Immediately after the injection, you may feel that your pain may be gone or quite less. This is due to the local anesthetic injected. This will last only for a few hours. Your pain will return and you may have a "sore back" for a day or two. This is due to the mechanical process of needle insertion as well as initial irritation form the steroid itself. You should start noticing pain relief starting the 5th day or so.

What should I do after the procedure?

You should have a ride home. We advise the patients to take it easy for a day or so after the procedure. You may want to apply ice to the affected area. Perform the activities as tolerated by you.

Can I go to work to work the next day?

Unless there are complications, you should be able to return to your work the next day. The most common thing you may feel is sore back.

How long the effect of the medication lasts?

The immediate effect is usually from the local anesthetic injected. This wears off in a few hours. The cortisone starts working in about 5 to 7 days and its effect can last for several days to a few months.

How many injections do I need to have?

If the first injection does not relieve your symptoms in about a week to two weeks, you may be recommended to have one more injection. If you respond to the injections and still have residual pain, you may be recommended for a third injection

Can I have more than three injections?

In a six-month period, we generally do not perform more than three injections. This is because the medication injected lasts for about six months. If three injections have not helped you much, it is very unlikely that you will get any further benefit from more injections. Also, giving more injections will increase the likelihood of side effects from cortisone.

Will the Facet Joint Injection help me?

It is difficult to predict if the injection will indeed help you or not. Generally speaking, the patients who have recent onset of pain may respond much better than the ones with long standing pain.

What are the risks and side effects?

Generally speaking, this procedure is safe. However, with any procedure there are risks, side effects, and possibility of complications. The most common side effect is pain – which is temporary. The other risks involve, infection, bleeding, worsening of symptoms, spinal block, Epidural block etc. The other risks are related to the side effects of cortisone: These include weight gain, increase in blood sugar (mainly in diabetics), water retention, suppression of body’s own natural production of cortisone etc. Fortunately, the serious side effects and complications are uncommon.

Who should not have this injection?

If you are allergic to any of the medications to be injected, if you are on a blood thinning medication (e.g. Coumadin®), or if you have an active infection going on, you should not have the injection.


__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especially in neck and underarms
__ Shortness of breath (air hunger) with little or no exertion
__ Frequent sighing
__ Tremor or trembling
__ Severe nasal allergies (new allergies or worsening of previous allergies)
__ Cough
__ Night sweats
__ Low-grade fevers
__ Feeling cold often
__ Feeling hot often
__ Cold extremities (hands and feet)
__ Low body temperature (below 97.6)
__ Low blood pressure (below 110/70)
__ Heart palpitations
__ Dryness of eyes and/or mouth
__ Increased thirst
__ Symptoms worsened by temperature changes
__ Symptoms worsened by air travel
__ Symptoms worsened by stress

__ Headache
__ Tender points or trigger points
__ Muscle pain
__ Muscle twitching
__ Muscle weakness
__ Paralysis or severe weakness of an arm or leg
__ Joint pain
__ TMJ syndrome
__ Chest pain

__ Lightheadedness; feeling "spaced out"
__ Inability to think clearly ("brain fog")
__ Seizures
__ Seizure-like episodes
__ Syncope (fainting) or blackouts
__ Sensation that you might faint
__ Vertigo or dizziness
__ Numbness or tingling sensations
__ Tinnitus (ringing in one or both ears)
__ Photophobia (sensitivity to light)
__ Noise intolerance

__ Feeling spatially disoriented
__ Dysequilibrium (balance difficulty)
__ Staggering gait (clumsy walking; bumping into things)
__ Dropping things frequently
__ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
__ "Not quite seeing" what you are looking at

__ Hypersomnia (excessive sleeping)
__ Sleep disturbance: unrefreshing or non-restorative sleep
__ Sleep disturbance: difficulty falling asleep
__ Sleep disturbance: difficulty staying asleep (frequent awakenings)
__ Sleep disturbance: vivid or disturbing dreams or nightmares
__ Altered sleep/wake schedule (alertness/energy best late at night)

__ Depressed mood
__ Suicidal thoughts
__ Suicide attempts
__ Feeling worthless
__ Frequent crying
__ Feeling helpless and/or hopeless
__ Inability to enjoy previously enjoyed activities
__ Increased appetite
__ Decreased appetite
__ Anxiety or fear when there is no obvious cause
__ Panic attacks
__ Irritability; overreaction
__ Rage attacks: anger outbursts with little or no cause
__ Abrupt, unpredictable mood swings

Some people may have most of these symptoms or hardly any but they can still suffer with fibromyalgia, sadly there is no cure for this and many other chronic illnesses

Wishing you the best and low-pain days if you are fighting this or any chronic illness

Hugs and blessings Jayde Dow

__ Phobias (irrational fears)
__ Personality changes

__ Eye pain
__ Changes in visual acuity (frequent changes in ability to see well)
__ Difficulty with accommodation (switching focus from one thing to another)
__ Blind spots in vision

__ Sensitivities to medications (unable to tolerate "normal" dosage)
__ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
__ Sensitivities to foods
__ Alcohol intolerance
__ Alteration of taste, smell, and/or hearing

__ Frequent urination
__ Painful urination or bladder pain
__ Prostate pain
__ Impotence
__ Endometriosis
__ Worsening of premenstrual syndrome (PMS)
__ Decreased libido (sex drive)

__ Stomach ache; abdominal cramps
__ Nausea
__ Vomiting
__ Esophageal reflux (heartburn)
__ Frequent diarrhea
__ Frequent constipation
__ Bloating; intestinal gas
__ Decreased appetite
__ Increased appetite
__ Food cravings
__ Weight gain
__ Weight loss

__ Rashes or sores
__ Eczema or psoriasis

__ Hair loss
__ Mitral valve prolapse
__ Cancer
__ Dental problems
__ Periodontal (gum) disease
__ Aphthous ulcers (canker sores)

__ Difficulty with simple calculations (e.g., balancing checkbook)
__ Word-finding difficulty
__ Using the wrong word
__ Difficulty expressing ideas in words
__ Difficulty moving your mouth to speak
__ Slowed speech
__ Stuttering; stammering
__ Impaired ability to concentrate
__ Easily distracted during a task
__ Difficulty paying attention
__ Difficulty following a conversation when background noise is present
__ Losing your train of thought in the middle of a sentence
__ Difficulty putting tasks or things in proper sequence
__ Losing track in the middle of a task (remembering what to do next)
__ Difficulty with short-term memory
__ Difficulty with long-term memory
__ Forgetting how to do routine things
__ Difficulty understanding what you read
__ Switching left and right
__ Transposition (reversal) of numbers, words and/or letters when you speak
__ Transposition (reversal) of numbers, words and/or letters when you write
__ Difficulty remembering names of objects
__ Difficulty remembering names of people
__ Difficulty recognizing faces
__ Difficulty following simple written instructions
__ Difficulty following complicated written instructions
__ Difficulty following simple oral (spoken) instructions
__ Difficulty following complicated oral (spoken) instructions
__ Poor judgment
__ Difficulty making decisions
__ Difficulty integrating information (putting ideas together to form a complete picture or concept)
__ Difficulty following directions while driving
__ Becoming lost in familiar locations when driving
__ Feeling too disoriented to drive