Spreading Your Eggs…

The most consistent treatment advice that all the experts in FM try to promote is a multi-faceted comprehensive treatment approach. do_not_put_all_your_eggs_in_one_basketThose who have followed this blog for a while know that I have always promoted this advice: this means NOT putting all your eggs in one basket…

Over time, you can validate what works best to alleviate your pain. A number of lifestyle changes and other treatment methods can have a cumulative positive effect on the pain you experience.

Here is a list of some commonly used treatment options:

  1. Conventional medicines — Your doctor will work with you to discover what prescription medicines may work best for you. Options are many including pain and antidepressant medicines.
  2. Nutrition and diet — Some researchers believe that the foods you eat can affect FM symptoms.
  3. Dietary Supplements — Vitamins and minerals play important roles in health and maintenance of the body.
  4. Exercise — Exercise helps relieve joint stiffness and can help alleviate some of the pain as well. Short workouts have been proven to help many of us. Pain may initially increase, but then gradually decreases. Hydrotherapytai-chi and yoga are excellent forms of exercise. These forms of exercise incorporate relaxation and meditation techniques. Deep breathing and slow movement will reduce your stress level and increase your fitness.
  5. Physiotherapy — A physiotherapist can help you with stretching and good posture. Stretching will reduce joint and muscle stiffness. This therapist can also  help you with relaxation techniques, another powerful FM treatment option.
  6. Relaxation therapy — Stress aggravates FM. Reducing stress will provide you with a more restful sleep, improving symptoms.
  7. Massage therapy — This is another great relaxation technique.
  8. 270. aspirinOver-the-counter drugs — You will need to work with your doctor. Always talk to your doctor about any over-the-counter medications you plan to take.
  9. Herbal remedies — Many herbs have medicinal healing powers. Again, you must talk to your doctor when using herbal remedies
  10. Chinese medicine — Consider exploring Chinese medicine which places great emphasis on herbal remedies and incorporates life energy healing techniques.
  11. Homeopathy — Visit a homeopathic specialist. They specialize in natural remedies to illnesses.
  12. Acupuncture — Modern adherents of acupuncture believe that it affects blood flow and the way the brain processes pain signals. Studies have shown this may be effective for FM.
  13. Chiropractic care—Chiropractors specialize in spinal problems, which can be a major source of pain for some people.

Your odds of gaining a significant reduction in symptoms, and improving your quality of life through a combination of many different treatment options, is pretty good…if you get the right combination.

There are thousands of different options and combinations of options. What works best?

Somehow you have to record all the treatments you are trying, how you feel on a particular, what happens when you add a new modal. It’s not easy…I can’t even keep track and that’s part of the reason I started this blog…you forget that you took that extra pain-killer because your head was killing you on Wednesday, or that you missed your hydrotherapy session because your stomach was acting up.

That really is the great challenge with fighting Fibro – the BEST combination of treatments will be different for each individual. (Isn’t that the bit that sucks the most? Hearing that everyone is different?)

We need to remember that we (YOU) are the centre point of treatment, by focusing on treatments that match our own lifestyles, abilities, symptoms and resources. The problem is that a personalized treatment approach to FM relief cannot be developed without a firm understanding of the symptoms and co-morbid conditions that require treatment (and I’ve been trying to research it all for over a year…and I keep finding new symptoms!).

We must also establish a trustworthy support team to assist us in pursuing not only all the different treatment options, but the execution of the treatments chosen. Effective teams typically include the patient’s primary care physician, various specialists (e.g., rheumatologists, neurologists, dietitians, psychologists), as well as friends, family, and even members of fibromyalgia support groups.

And finally (if all of that was not enough), specific and achievable goals must be set in order to measure the effects of EVERYTHING!

Weighing-up-the-benefits-with-the-risks-of-virtualisation

It is vitally important to constantly and consistently observe and evaluate the treatment methods being used. Through this whole process, we get frustrated over and over again! Our reality is an ongoing trial-and-error approach to treatment. AAARGGGGHHHH!

However, it is crucial to treatment success and must be embraced as a necessary evil.

When trying to determine a personalized course of treatment, we need to forget the agendas of physicians, pharmaceutical companies, and other external entities. Our decisions need to be driven by both symptoms and causal factors. Examples of important questions to ask during this process include:

  • What symptom do I want to address?
  • How will this particular treatment impact that symptom?
  • What are the potential side effects of this treatment?
  • Does this treatment have the potential to interact with other treatments I am using?
  • What will this treatment cost?
  • What are my expected results and in what time frame should I anticipate to note results?

Throughout this process, it is important to remember that successful relief is highly individualized (again!) and will vary between patients. What appears to be a miraculous treatment for me may fail to provide any benefit to you.

This whole process takes more time (yes! most of us have had to wait years for a diagnosis and now we have to take more time!).

A trial and error evaluation process is most effective when employed in a scientific manner meaning that different treatment elements should often be tested in isolation. I know that when I read about CoQ10 and D-Ribose and Sam-E, I started taking them all at the same time. I am now no longer able to tell which supplement or combination of supplements is actually driving the results they may experience. It is impossible to accurately measure specific results to associate with any individual option, so I need to start again…again!

If you’d like to see iHerb’s selection of supplements, click here. Use Coupon Code LHJ194 to get $10 off any first time order over $40 or $5 off any first time order under $40.

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When the Going Gets Tough…

There’s a lot to appreciate in everyone’s life even when things are tough…

One of the most tragic things about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon instead of enjoying the roses outside the window.

Dale Carnegie

Who wouldn’t rather be happy than sad, positive than depressed, calm than anxious?

But there’s no difference, in fact, between various emotions. It’s all just energy and the surest way to hold onto negative feelings is to judge them, analyse them or try to pretend they’re not happening. We can’t be cheerful all the time – that’s a plain fact of life – but we can be happy.

Even in the darkest hour, we can find the peaceful sanctuary that lies within each of us.

7520956914_db9ee248daIt’s picking yourself up and dusting yourself off and starting again that counts. I guess it all comes back to balance again – there must be enough in life to make our hearts lift and our spirits soar, whether it be a hug from a friend, a beautiful piece of music, a puppy or a child’s playfulness, the sight of the ocean, trees, flowers, a lover’s smile and so many more.

Conquer Your Fear

Subconsciously, we set tests up for ourselves, especially in areas that we know are our weakest. What we fear, we will always see. If you’re constantly worried about money, you will eventually have a financial crisis to deal with; if you’re afraid of rejection and loneliness, you’ll experience relationship breakdown, and if you’re afraid of tangible things such as a particular insect or object, you will see nothing else. So, the important thing is to conquer your fear before it cripples your life.

If you want to overcome a certain issue or problem, for a while, it will get worse as your negative ego struggles to keep it in a dark place. It’s a test of our resolve – will we cave in or hold strong? If it’s the former, we’re simply not ready so don’t lose heart and if it’s the latter, there will be rewards in the improvements in life that will become clear.

daemon_hammerWe humans seem to like to learn our lessons by being hit over the head by a mallet, instead of gently and effortlessly.

Learning is a lifetime’s occupation and yes, we repeat many lessons as we go along. But we must never get impatient or critical of ourselves, just start again and use the newfound knowledge to do better, feel better, relate better, live happier.

Look for the Gift

Prosperity comes in many forms and sometimes it’s heavily disguised. When life seems at its hardest, that’s when we have to look for the unexpected gift.

Have you seen the movie Serendipity? In it the woman says that in Greece, they don’t write obituaries when someone dies; they just ask one question, ‘Did the person have passion?’ It represents risk, or, taking things to another level, adventure.

See the Magic

What about magic? Is that another wishy-washy concept or something real and tangible? I (try to) always believe that things will come out right in the end – and they generally do. Try to see the magic in ordinary, everyday things; look at the world the way a child does or imagine seeing again after years of blindness.

all around you

Self-talk

When you behave in undesirable ways, feel ‘upset’ or have physical symptoms, ask yourself these questions:

  • What am I doing to create this situation?
  • Are my emotions helping or hurting me?
  • What am I telling myself?
  • What are the facts?
  • Am I exaggerating or distorting?
  • Are there other explanations?
  • How likely are my worries?
  • Whose problem is this really?
  • What have I got to learn from the situation?
  • Am I failing to trust?
  • Am I giving in to negative thoughts?
  • Am I running into the future?

Remember to appreciate your daily blessings and not find a whole lot to criticise about your life, which is really quite wonderful most of the time.

Turning the Negative Positive

If you are a negative self-talker, you may not even be aware of it. Thinking the worst can be second nature after years of doing it. But it can be influencing how you live life and keeping you from being HAPPY!

tumblr_lsu3w4LS7D1qc0yn6o1_500Self-talk isn’t just mindless chatter. It has a way of creating its own reality. Telling yourself you can do something can help it happen. Telling yourself you can’t do something can make that come true – it’s called a self-fulfilling prophecy. Tell yourself you’ll never lose weight and it can be like eating a whole bag of chips. Tell yourself it’s too hard to find another job and you’ll likely watch TV instead of updating your resume.

“Self-talk dictates how you relate to yourself and how you show up for other people,” says Beneduce. Franco Beneduce is a certified life coach and group facilitator in San Francisco. As he coaches people on successful life strategies, he sees how your self-talk (the conversations you have in your head) either supports or undermines your progress toward their goals.

Let’s say you think you have nothing interesting to say. If you keep telling yourself that, other people are going to see you that way, too. In fact, people who think negatively tend to be less outgoing and have weaker social networks than positive thinkers. Multiple studies link positive emotions with more satisfying relationships, more romance, and lower rates of divorce.

Negative self-talk can be a runaway train. Your mind goes around in circles replaying a negative event or your own shortcomings. “People who ruminate dwell on negative feelings,” says Sonja Lyubomirsky, PhD, professor of psychology at the University of California in Riverside. You may think that you’re getting in touch with your true feelings, but bad feelings have a way of getting worse the more attention you give them (sort of like a pimple that you just keep squeezing!)

The more you focus on negative events or shortcomings, the harder it is to put them behind you. Research shows that happy people put bad days behind them.

Stop_negative_self_talk___think_positiveThe problem is if negative self-talk came with an off switch, you could just flip it; but it doesn’t. It takes a plan and some work to tone it down.

 

Here are four ways to make it happen:

  • Distance yourself. You can’t banish negative self-talk forever, but you can take a step back from it. When you notice negative self-talk occurring, Beneduce says address it like you would an opinionated third party. You might say, “Thanks for sharing,” or “It’s interesting you feel that way” and move on.
  • Distract yourself. “Over-thinking involves focusing on a train of thought that goes around and around,” Lyubomirsky says. “You can stop that train of thought by focusing on something else.” Try doing a crossword puzzle, or any other activity that fully engages your mind.
  • How to Begin Handling Your Self Talk and Feel GreatCall them on it. Give your negative thoughts the third-degree and they could crumble. You might ask yourself, “Is that really true?” or “Is there another way to look at this situation?” You may also look for benefits. If you missed that job promotion, are there any lessons for the future you can take from the situation? Or could another opportunity come out of it?
  • Save them for later. Set aside a time of day for negative self-talk. If you hear yourself doubting, blaming, or comparing yourself to others at another time of day, tell yourself you will come back to the conversation later. When the appointed time arrives, your negative thoughts may have lost all their oomph.

Beneduce admits he’s not immune to negative self-talk. When he works with large groups, he knows everyone will be watching him. If he’s on, the day will go well, but if he’s off, he flops. So going in, he tells himself, “I am confident. I have the skills I need. I am going to trust myself.”

Sometimes he’ll write three words on a piece of paper to reinforce it. Throughout the day, he glances at them: “Fun. Smart. Effective.” And that is what he projects.

You can do it, too!

can

Bliss Myths

Want more happiness in your life? And who wouldn’t?

The first step may be to change your views about what happiness really is…

Myth 1: Either you have it or you don’t.

There’s evidence that suggests genetics contributes to about 50% of your happiness set point — the level of happiness that seems most normal for you.

But that’s a far cry from 100%, says Sonja Lyubomirsky, PhD, author of The How of Happiness: A New Approach to Getting the Life You Want and professor of psychology at the University of California, Riverside.

“If you do the work,” Lyubomirsky says, “research shows you can become happier, no matter what your set point is. You probably won’t go from a one to a 10, but you can become happier. It just takes commitment and effort as with any meaningful goal in life.”

Not only can you become happier, she says, but it gets easier over time. Work on nurturing relationships, writing in a gratitude journal, committing random acts of kindness, or developing a program of morning meditation or exercise.

make-happiness-a-habitChanges like these (proven methods for enhancing happiness) can become habits after a while, which means they eventually take less effort.  Have a look at yesterday’s The Pursuit of Happyness.

Myth 2: Happiness is a destination.

Happiness_journeyMany people think of happiness as a destination or acquisition – whether it’s a diagnosis, money, or a new medication. Sure, things like these can contribute to happiness, but not as much as you might think, Lyubomirsky says. They account for only about 10% of your whole happiness picture.

donutIf you’ve done the math, you now realize that about 40% of your happiness is in your hands. Lasting happiness has more to do with how you behave and think – things you control – than with many of life’s circumstances.

Robert Biswas-Diener, co-author of Happiness: Unlocking the Mysteries of Psychological Wealth, agrees.

“Happiness isn’t the emotional finish line in the race of life,” he says. It’s a process and a resource. Biswas-Diener says there’s a mountain of data showing that when people are happier, they become healthier and more curious, sociable, helpful, creative, and willing to try new things.

“Happiness is not just an emotional flight of fancy,” he says. “It’s beneficial for the long run, serving a real function in our lives.”

In psychological lingo, this is called the broaden-and-build theory of positive emotions, says Michael A. Cohn, PhD, a post-doctoral researcher with the Osher Center for Integrative Medicine at the University of California, San Francisco. Cohn recently conducted a study with 86 college students who submitted daily emotion reports. The researchers measured the students’ ability to flexibly respond to challenging and shifting circumstances and used a scale to assess life satisfaction. The study showed that positive emotions increased resilience – skills for identifying opportunities and bouncing back from adversity – as well as life satisfaction.

Myth 3: You always adapt to your happiness set point.

It’s true that people tend to adapt fairly quickly to positive changes in their lives, Lyubomirsky says. In fact, adaptation is one of the big obstacles to becoming happier. The new doctor, approval for Disability, friends’ support – all can bring a temporary boost but then recede into the background over time.

But why? One reason, Lyubomirsky says, is that we evolved to pay more attention to novelty. For our ancestors, novelty signalled either danger or opportunity – a chance for a new mate or food, for example. We’re attuned to contrasts, not sameness. But that also means we readily adapt to positive experiences that happen to us, Lyubomirsky says.

“I argue that you can thwart adaptation, slow it down, or prevent it with active ways of thinking or behaving,” says Lyubomirsky, who, after moving to Santa Monica, Calif., found herself adapting to her beautiful surroundings. To counteract this trend, she put effort into appreciating the view she saw when running on a path overlooking the ocean. She says she now savours that view every day, trying to see it “through the eyes of a tourist.”

To help thwart adaptation, you can also use novelty to your advantage. For instance, if your home has become a little ho-hum, you might try rearranging furniture or hosting parties for a variety of friends. Voluntary activities like these are most effective because they require you to pay attention, Lyubomirsky notes.

Myth 4: Negative emotions always outweigh the positive ones.

For quite some time, research has indicated that negative emotions are more powerful than positive ones, Cohn says. For example, studies show that people don’t have equal reactions to winning $3 and losing $3, he says. The loss tends to have a stronger effect than the gain.

Negative emotions might edge out positive emotions in the moment, Cohn says, because they’re telling you to find a problem and fix it. But positive emotions appear to win out over time because they let you build on what you have, a finding reinforced by Cohn’s recent study.

“We found that as positive emotions go up, there comes a point where negative emotions no longer have a significant negative impact on building resources or changing life satisfaction,” Cohn says. “Positive emotions won’t protect you from feeling bad about things, nor should they. But over time, they can protect you from the consequences of negative emotions.”

This may not be true for people with depression or other serious disorders, although they do show benefits when positive emotions are added to conventional psychotherapy, Cohn notes.

Myth 5: Happiness is all about hedonism.

There’s more to happiness than racking up pleasurable experiences. In fact, helping others (the opposite of hedonism) may be the most direct route to happiness, notes Stephen G. Post, PhD. Post is co-author of Why Good Things Happen to Good People: The Exciting New Research That Proves the Link Between Doing Good and Living a Longer, Healthier, Happier Life.

“When people help others through formal volunteering or generous actions, about half report feeling a ‘helper’s high,’ and 13% even experience alleviation of aches and pains,” says Post, professor of preventive medicine and director of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University in Stony Brook, N.Y.

“For most people, a pretty low threshold of activity practiced well makes a difference,” Post says. This might involve volunteering just one or two hours each week or doing five generous things weekly (activities that are above and beyond what you normally do).

First documented in the 1990s, mood elevation from helping is associated with a release of serotonin, endorphins and oxytocin, a “compassion hormone” that reinforces even more helping behaviour, Post says.

Could compassion be rooted in our neurobiology? A National Academy of Sciences study showed that simply thinking about contributing to a charity of choice activates a part of the brain called the mesolimbic pathway, the brain’s reward centre, which is associated with feelings of joy.

“Although just thinking about giving or writing a check can increase our levels of happiness, face-to-face interactions seem to have a higher impact,” Post says. “I think that’s because they engage the [brain’s] agents of giving more fully through tone of voice, facial expression, and the whole body.”

Myth 6: One size fits all.

If you’re seeking a magic bullet or mystical elixir to enhance your happiness, you’re bound to be sorely disappointed. There is no “one size fits all” for happiness. Instead, there are many ways to boost your happiness. Here are options to try:

  • how-to-follow-your-bliss-inspirational-imagePick an activity that is meaningful to you, Cohn says. Whether you choose an activity that promotes a sense of gratitude, connectedness, forgiveness, or optimism, you’ll be most successful if your choices are personally relevant to you. And, he adds, this may also keep you from adapting to them too quickly.
  • Assess your strengths and develop practices that best use these gifts, Post suggests. Are you a good cook? Deliver a meal to a shut-in. A retired teacher? Consider tutoring a child. The possibilities are limited only by your imagination.
  • Vary your activities because promoting happiness is largely a question of finding a good fit, Lyubomirsky says. To that end, she helped Signal Patterns develop a “Live Happy” iPhone application that starts with a short survey to identify the happiness strategies that you’re suited to, such as journaling or calling someone to express gratitude. “You can lose your will [to do those activities] if it’s not a good fit,” Lyubomirsky says.

responsible-happiness-blogAnd when it comes to happiness, maintaining your will (and acting on it) might just put a pleasurable, meaningful life well within reach.

The Pursuit of Happyness

Contrary to popular belief, happiness doesn’t come from fame, fortune, or money. (We would still have FM if we were rich!) Rather, it comes from within. Happy people are happy because they make themselves happy. They maintain a positive outlook on life and remain at peace with themselves.

The question is: how do they do that?

It’s quite simple. Happy people have good habits that enhance their lives. They do things differently. Ask any happy person, and they will tell you that they …

1. Don’t hold grudges.

Easier said than done, right? Happy people understand that it’s better to forgive and forget than to let their negative feelings crowd out their positive feelings. Holding a grudge has a lot of detrimental effects on your wellbeing, including increased depression, anxiety, and stress – something we definitely do not need more of! Why let anyone who has wronged you have power over you? If you let go of all your grudges, you’ll gain a clear conscience and enough energy to enjoy the good things in life.

2. Treat everyone with kindness.

Did you know that it has been scientifically proven that being kind makes you happier? Every time you perform a selfless act, your brain produces serotonin, a hormone that most of us seem to need more of. Not only that, but treating people with love, dignity, and respect also allows you to build stronger relationships.

3. See problems as challenges.

The word “problem” is never part of a happy person’s vocabulary. A problem is viewed as a drawback, a struggle, or an unstable situation while a challenge is viewed as something positive like an opportunity, a task, or a dare. Whenever you face an obstacle, try looking at it as a challenge. Yes, we have a lot of challenges in our lives – but together we can meet them.

4. Express gratitude for what they already have.

There’s a popular saying that goes something like this: “The happiest people don’t have the best of everything; they just make the best of everything they have.” You will have a deeper sense of contentment if you count your blessings instead of yearning for what you don’t have.

5. Dream big.

People who get into the habit of dreaming big are more likely to accomplish their goals than those who don’t. If you dare to dream big, your mind will put itself in a focused and positive state.

6. Don’t sweat the small stuff.

Happy people ask themselves, “Will this problem matter a year from now?” They understand that life’s too short to get worked up over trivial situations. Letting things roll off your back will definitely put you at ease to enjoy the more important things in life.

7. Speak well of others.

Being nice feels better than being mean. Saying nice things about other people encourages you to think positive, non-judgmental thoughts.

8. Never make excuses.

Benjamin Franklin once said, “He that is good for making excuses is seldom good for anything else.” Happy people don’t make excuses or blame others for their own failures in life. Instead, they own up to their mistakes and, by doing so, they learn and proactively try to change for the better.

9. Get absorbed into the present.

Happy people don’t dwell on the past or worry about the future. They savour the present. They let themselves get immersed in whatever they’re doing at the moment. Stop and smell the (purple) roses.

10. Avoid social comparison.

Everyone works at his own pace, so why compare yourself to others? My father used to quote Desiderata* to me: If you compare yourself with others, you may become vain and bitter…If you think you’re better than someone else, you gain an unhealthy sense of superiority. If you think someone else is better than you, you end up feeling bad about yourself. You’ll be happier if you focus on your own progress and praise others on theirs.

11. Choose friends wisely.

Misery loves company. That’s why it’s important to surround yourself with optimistic people who will encourage you to achieve your goals. The more positive energy you have around you, the better you will feel about yourself.

12. Never seek approval from others.

Happy people don’t care what others think of them. They follow their own hearts without letting naysayers discourage them. They understand that it is impossible to please everyone. Listen to what people have to say, but never seek anyone’s approval but your own.

13. Take the time to listen.

Talk less; listen more. Listening keeps your mind open to others’ wisdoms and outlooks on the world. The more intensely you listen, the quieter your mind gets, and the more content you feel.

14. Nurture social relationships.

A lonely person is a miserable person. Happy people understand how important it is to have strong, healthy relationships. Yes, it can be harder for us than others; but, try to take the time to see and talk to your family, friends, or significant other.

15. Meditate.

Meditating silences your mind and helps you find inner peace. You don’t have to be a zen master to pull it off. Happy people know how to silence their minds anywhere and anytime they need to calm their nerves.

16. Eat well.

Junk food makes you sluggish, and it’s difficult to be happy when you’re in that kind of state. Everything you eat directly affects your body’s ability to produce hormones, which will dictate your moods, energy, and mental focus. Be sure to eat foods that will keep your mind and body in good shape.

17. Exercise.

Studies have shown that exercise raises happiness levels just as much as Zoloft does. So just think how good you will feel if you’re taking your anti-depressants AND exercising! Exercising also boosts your self-esteem and gives you a higher sense of self-accomplishment.

18. Tell the truth.

Lying stresses you out, corrodes your self-esteem, and makes you unlikeable. The truth will set you free. Being honest improves your mental health and builds others’ trust in you. Always be truthful, and never apologize for it.

19. Establish personal control.

Happy people have the ability to choose their own destinies. They don’t let others tell them how they should live their lives. Being in complete control of one’s own life brings positive feelings and a great sense of self-worth. Be your own advocate. Figure out what really works for YOU. Learn how to manage YOUR own FM. There are on-line tools (such as FibroTrack) that can help you work out a structured plan and let you regain control!

20. Accept what cannot be changed.

Once you accept the fact that life is not fair, you’ll be more at peace with yourself. Instead of obsessing over how unfair life is, just focus on what you can control and change it for the better.

 

Desiderata

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

Max Ehrmann, Desiderata, Copyright 1952.

Sleep Deprivation Torture

It seems to be that EVERYONE is discussing sleep (again!)…or lack of it, to be more precise. Is this a seasonal cycle? Or is it just coincidental that we ALL are suffering from (and discussing) sleep deprivation right now?

So what happens to our bodies when we don’t get enough sleep?

Dr. Rafael Pelayo of Stanford University’s Sleep Disorder Clinic doesn’t mince words:

This is what happens to your body if it’s deprived of sleep:

  • You have problems with memory and concentration.
  • You have problems finding the right word.
  • You get irritable – you think so?
  • Neurotransmitters in the brain become altered.
  • You become more susceptible to infection.
  • At its extreme, sleep deprivation can lead to death.

Depression and Low Self-Esteem

Sleep-deprived people have longer illnesses, more severe depression, and greater fatigue than those who aren’t sleep deprived. Other studies link sleep deprivation with self-esteem problems. Getting good sleep and curing insomnia helps to fight depression and increase self-esteem.

Weight Gain

If you’re losing sleep your body mass index (BMI) is likely to increase, and so is your waist circumference (hey! where’s the part about my arse?). According to Professor Francesco Cappuccio of Warwick Medical School, your risk of becoming obese is almost doubled.

Sleep deprivation increases appetite through hormonal changes. Specifically, more of the appetite-increasing ghrelin is produced when you’re not getting good sleep; less of the appetite-suppressing leptin is produced. Sleep deprivation causes you to eat more.

Physical Appearance (other than weight)

I can’t believe that I’m publishing this photo – but please, tell me my appearance isn’t changed because of those big black circles under my eyes!

Despite study participants being convinced that their looks were affected by their lack of sleep, Alex Gardner of the British Psychological Society and emeritus Professor of Dermatology Ronnie Marks of the University of Wales found that sleep deprivation did not alter study participants’ physical appearance – tell that to the black suitcases under my eyes! Nonetheless, the study participants who were sleep deprived felt self-conscious about their appearance and thought their skin showed their lack of rest. Getting good sleep makes you feel better about yourself — but doesn’t change how you look.

Memory Loss

Dr. Jeffrey Ellenbogen of the Harvard Medical School found that “sleep protects memories from interference.” The more quickly you fall asleep after studying for a test or learning a new skill, the more likely you’ll remember it later. If you learn new information and then go about your daily business, you’ll have about a 44% lower chance of retaining what you’ve learned. This research could be particularly helpful when you’re learning a new job. Getting good sleep helps your memory, while sleep deprivation damages it.

Intellectual Impairment

Researchers at the University of Virginia have found that lack of sleep can impair IQ and cognitive development. Sleep helps to organize memories, solidify learning, and improve concentration. Getting good sleep increases cognitive ability and the ability to relate to others.

Physical Impairment

According to the National Sleep Foundation, your body suffers when you don’t get enough good sleep. Your coordination and motor functions may be impaired, and your reaction time may be delayed. You could have reduced cardiovascular performance, reduced endurance, and increased levels of fatigue because of sleep deprivation. Tremors and clumsiness can also result.

Immune system

It doesn’t seem fair… Right when you are exhausted after a stressful move or a big project at work, you come down with a cold. That’s no accident – sleep is essential to the immune system. Without adequate sleep, the immune system becomes weak, and the body becomes more vulnerable to infection and disease.

Nervous system

Sleep is also a time of rest and repair to neurons. Neurons are the freeways of the nervous system that carry out both voluntary commands, like moving your arm, and involuntary commands, like breathing and digestive processes.

Recent studies have suggested that sleep downtime of the brain, so active during the day, may replenish dwindling energy stores that cells need to function, repair cellular damage caused by our busy metabolism, and even grow new nerve cells in the brain.

Hormone release

Many hormones, substances produced to trigger or regulate particular body functions, are timed to release during sleep or right before sleep. Growth hormones, for example, are released during sleep, vital to growing children but also for restorative processes like muscle repair.

Sleep deprivation can be dangerous not only to you but others, since it affects motor skills like driving. Chronic sleep deprivation is also thought to cause long-term changes to the body, which contribute to increased risk for obesity, diabetes and heart disease.

When you continuously don’t get the amount of sleep you need, you begin to pay for it in daytime drowsiness, trouble concentrating, irritability, increased risk of falls and accidents, and lower productivity.

So when is some-one going to help us?

Guilty as Charged!

After yesterday’s post Guilt: the Gift that Keeps on Giving, I thought I should try to assuage some of those feelings and point out this article to you:

Seven Strategies for Reducing Guilt

By Bruce Campbell

Guilt is a common reaction to CFS and FM. Some people blame themselves for getting CFS or FM, thinking they might have avoided becoming ill if they had lived differently. Other people feel guilty about no longer contributing as they used to, while others lament that they aren’t the spouse or parent they wanted to be.

If you experience guilt associated with CFS or FM, what can you do to ease the burden it imposes? Here are seven strategies used by people in our program.

Adjust Your Expectations

Guilt is often triggered by perfectionism, holding ourselves to standards that don’t fit our new capabilities. Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. We may say things like “I have to do things perfectly” or “I have to be the best at everything” or “My kids deserve everything from me that other children get.”

You can reduce guilt by adjusting your expectations so that they match your new level of functioning. How do you do that? One place to start is by doing a reality check on your expectations. On the left side of a piece of paper, list all those things you no longer do but think you should do, for example, fix elaborate meals, drive kids to their activities or earn a living. On the right side, write your judgment of whether the expectation is realistic.

 Reframe (Change Self-Talk)

Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt. One person in our program says that she used to chastise herself for taking a nap. Her self talk was “you are weak and lazy for having to rest.” Now, when she goes to take a nap she tells herself, “I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren.”

Similarly, when feeling tired, you can say “This fatigue is not my fault; it came with CFS. So I don’t need to feel guilty about not being able to do everything I used to.” Or: “I didn’t ask for FM, so why should I feel shame when it prevents me from doing things.”

You can change your habitual ways of thinking about yourself to make them more accurate and more friendly. For step-by-step directions, see the article Taming Stressful Thoughts.

When Feeling Guilty, Shift Your Attention

Even if feeling guilty is inevitable, we can control how we respond when feelings of guilt arise. One person in our program said that when she feels guilty, she asks herself, “Is this feeling productive?” In some cases, the answer will be “Yes.” Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently. (See next strategy.)

If the feeling is not productive, however, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, “It’s better not to go some places in your head, so I’ve learned how to control my own thoughts.” Another said that when she is caught up in feelings of guilt, she tells herself things like ‘this isn’t my fault’ or ‘these feelings will pass as long as I don’t allow myself to act on them’.”

If You’re Wrong, Apologize and Make Amends

Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more care. One person said that if she does something to hurt her husband or her children, like lashing out at them verbally, she apologizes.

If being undependable bothers you, you can use guilt over canceling out on commitments as an impetus to be more consistent in pacing. Another person said, “I was so embarrassed by canceling out on people that I promised myself I would do better. That commitment motivated me to be more consistent in pacing and to become a more dependable person.”

Educate Others (Within Limits)

In addition to adjusting your expectations for yourself, others expectations of you will have to change as well. People in our groups have suggested several strategies for doing this. One is to educate people about CFS and FM, emphasizing that they are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her. One person in our program gave each member of her family a booklet on CFS from the CFIDS Association and asked them to read it as their birthday present to her one year. The process of educating family and friends is usually a gradual one, often taking several years.

Learn Assertiveness

Another strategy for reducing guilt is to be assertive, standing up for yourself by stating what you will and won’t do. A person in our program says that her family now accepts it when she says “I am sorry I can’t do that.” She tells about a family outing she and her husband went on with their adult children. At the end, her husband invited the children over to their house. “In the past,” the woman says, “I would have gone along with it, seething inside at myself for not saying anything and at them for not knowing I couldn’t do it.”

Instead, she told everyone that she needed to rest and she suggested that her husband spend the evening at one of the children’s homes. So that’s what the family did. The woman took a nap at home while the rest of the family went to a daughter’s house to watch a movie.

Practice Relationship Triage

A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go. You may decide that some people will never understand your condition or accept that you are ill. In some cases, you might choose to end a relationship. For relationships you decide are necessary, you might limit the frequency of contact.

Guilt: the Gift that Keeps on Giving

FCKHaving started FCK (a directory of blogs that educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia), I have had the privilege of discovering so many blogs that I may never have seen if not for this project.

One of those blogs is Same Burn…Different Flame. Cathy is about 12 types of awesome, 10 of which she hasn’t quite put her finger on (yet!) It isn’t her goal to change the world or end our nation’s poverty crisis…. but hell, if she could, she would TOTALLY do it.

One of Cathy’s blog posts has resonated with me greatly – here it is:

I’m sorry: An open letter to my loved ones

Dear family and friends,

First and foremost, I’m sorry.  I feel like I’ve let you down in many, many ways.  And there is nothing to say, except, “I’m sorry.”

I can honestly say that I don’t have a handle on what’s happening with me, lately.  At one point in the not-so-distant past, I was lively and energetic.  That girl is…. well, she’s gone now.  And I don’t know where she went.

I feel like I can never get enough sleep.  Never.  I’m exhausted.  During the week, I force myself to get out of bed and carry on with my day.  I get up at 5:30 am, drive to work, work all day (most of the time without a lunch break), drive home and finally take my shoes off at 6:00 pm-ish. I. Am. Exhausted.  I make dinner (which, admittedly, isn’t all that exciting these days), and I collapse on the couch, too exhausted to do anything else.  By the weekend, I lie around the house, unmotivated to do anything but sleep.

And then, there’s the pain.  I don’t know that you would ever understand, unless you have been where I am right now.  Miserable doesn’t even begin to describe it.  Imagine, if you can, the last time you were really sick.  Then, imagine the last time you were really sore.  Like… for me?  It’s like the time I had walking pneumonia, combined with feeling like I had just done a half-marathon.  I dread waking up, because moving in the morning is like trying to break out of an invisible cast.  I’m stiff.  It hurts.  And I don’t know if it’s just a morning thing, or if I’ll be suffering all day.  Once I get going, random things will bother me.  My hips will hurt.  Or my toes will burn.  Or my back will ache.  Or I’ll be itchy.  Or my legs will cramp.  Or I’ll have a headache.

Good God… the headaches.  They’re not to be underestimated.  It could be a dull, constant headache.  Or Satan can be gripping my brain with his red-hot, pokey fingers.  They can last a few hours, or for days.

I get tired of taking medications.  Side effects from them mean that I have to take other things to try to feel better.  For example, the Tramadol makes me itchy.  So I have to take Bendryl to alleviate the itchiness.  But Benedryl makes me sleepy.  So I have to take an energy pill.  The energy pill makes the pain worse (not sure why).  So I have to take Tramadol.  And so it begins, again.

……I carry guilt with me.  All the time.  I feel guilty because I am tired.  I feel guilty because I am lazy.  I feel guilty because I am crabby.  I feel guilty because I am distant.  I feel guilty because I’m weak.  I feel guilty because I’m losing the battle.

I don’t have the answer.  But it isn’t for lack of asking the question.  Please, don’t stop loving me.  Don’t leave.  Don’t close your ears and your heart.  I’m trying.

Maybe, someday, the girl that you used to know will come back.  Until then, just keep loving the girl that I am, now. Hug me.  Tell me that I’ll be okay.  Hold my hand.  Talk with me.  Let me vent.  Help me forgive myself.

With unparalleled love,

me

Feeling the same way? Feeling guilty?

How a Worm May Help You Sleep

FM and insomnia – think you know everything? Here’s some interesting (and difficult to understand) information…

It happens to all of us: you have another night of not being able to sleep, and the next day, you’re exhausted. Humans (even ones with FM) aren’t unique in that; all animals need sleep, and if they don’t get it, they must make it up.

The biological term for that pay-the-piper behaviour is ‘sleep homeostasis,’ and now, thanks to a research team at the Perelman School of Medicine, University of Pennsylvania, one of the molecular players in this process has been identified – at least in some weirdly named worms.

David Raizen, MD, PhD, assistant professor of Neurology, and his colleagues report in Current Biology that even in Caenorhabditis elegans, a tiny nematode worm that feeds on bacteria, loss of sleep is “stressful.”

The researchers forced the animals to stay awake during a developmental stage when they normally sleep. These sleep-deprived worms exhibited signs of sleep homeostasis – they were harder to wake up compared to control worms.

While nematode worms do not sleep like we do, they still have a sleep-like state (lethargus), says Raizen, which allows the worms to maintain bodily equilibrium (homeostatic response).

cell 1On the molecular level, loss of sleep in the worm was associated with migration of the stress-related DNA-binding protein DAF-16 from the cell cytoplasm into the nucleus. Here, the protein activates expression of stress-related genes. cell 2Knocking out that DAF-16 gene eliminated the worms’ need to maintain the bodily equilibrium – the equivalent of letting an FM sufferer still feel rested even after sleep deprivation.

“You might think that is a good thing,” Raizen says, “but a good percentage of DAF-16 mutants died” – as many as half of the worms in some cases. That, Raizen says, suggests that the movement of DAF-16 into the nucleus is not merely a consequence of sleep deprivation, but rather a key to the homeostatic response.

There is something important about your body requiring the time to rest and realign but, Raizen concludes, “We don’t know what that is, but it’s clearly important to the worm.”

Sleep homeostasis is critical to human health. Sleep deprivation in humans has been linked to weight gain and insulin resistance, and in laboratory rats, has been linked to death, Raizen says.

Whether DAF-16 plays the same role in humans as in worms is an open question. But it turns out that Caenorhabditis elegans is actually a useful model organism for studying vertebrate neurobiology, Raizen says. Many key observations made in the invertebrate have carried over to vertebrate systems.

Interestingly, when the team asked which tissue requires DAF-16 activity in order to restore sleep homeostasis in mutant animals, they found to their surprise that it isn’t neurons. But restoring DAF-16 activity in muscle tissue did restore homeostasis, suggesting an extra-neuronal component of sleep.

“The muscle must somehow communicate with the nervous system to coordinate this response,” Raizen says.

He just doesn’t know how! 

Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

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