SLEEP DEPRIVATION

[Sleep is] the golden chain that ties health and our bodies together.
Thomas Dekker (1572 - 1632

Sleep Deprivation

Cause and some suggestions for help.

Today I feel very tired, more than usual. Possibilities could be a change in the weather, since rain is predicted and the barometer is dropping, which does effect our symptoms.

Sleep deprivation is a real problem with Fibromyalgia Syndrome. Here is an excerpt from CFIDS/Fibromyalga Self Help by Bruce Campbell:

Sleep problems are one of the most common complaints among people with fibromyalgia and Chronic Fatigue Syndrome. With both conditions, poor sleep is a major source of intensified symptoms. Patients may spend a night in bed, but wake up as tired as when they went to bed. Other sleep problems are common as well, such as difficulty getting to sleep, waking in the middle of the night or early in the morning, and over sleeping.

It is widely believed that a major cause of sleep problems for people with FM and CFS is an insufficient amount of the deepest and most restorative type of sleep, called delta sleep. Patients with CFS and fibromyalgia often get less delta sleep than they need, and thus don't feel refreshed when they get up in the morning. When healthy volunteers in a research experiment were deprived of delta sleep, they developed symptoms of fibromyalgia in a few days.

Treating Sleep
Treating sleep is especially challenging because there is no single medication that has proven helpful in solving sleep problems for people with CFS and fibromyalgia. Also, many people taking sleep medications develop drug tolerance, so that a medication becomes less effective over time. For both these reasons, sleep problems can benefit from a flexible, experimental approach that utilizes a variety of strategies.

Most patients are prescribed an anti-depressant to help with seratonin and the sleep mechanism. I am currently taking Cymbalta after many years using Effexor. The switch was prescribed, when like most meds, Effexor was no longer effective for me. I have tried Ambien and Lunesta which will assist me some of the time, but not consistently, because this syndrome behaves like a virus and adapts itself to medications causing them to no longer be effective.

There are some natural therapies that can be applied. Products or herbal formulas containing Valerian and Melatonin could possibly be the answer for some. I have taken both and find them helpful along with herbal teas prior to sleep. Of course, I am a strong advocate for natural healing remedies along with prescribed medications that are very necessary for handling this syndrome. http://www.herbnet.com/

Another main issue is comfort. If you are like me and cannot be too hot or too cold, cannot wear restrictive clothing, or have the heavy weight of blankets piled on you, fight with your pillow and positioning of your limbs, then finding the comfort zone is similar to finding the solution to Fibromyalgia itself. The only remedy I know of for this is: RESEARCH AND EXPERIMENTATION!!!!!!!!!! In simple words; Trial and Error.

Of course, if you are in severe pain, that needs to be dealt with first and foremost. Refer to blog post: MY REMEDIES FOR PAIN

SEASONAL CHANGES GOING FROM WINTER TO SPRING

If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome.
Anne Bradstreet (1612 - 1672), 'Meditations Divine and Moral,' 1655

The changing of seasons is very difficult on persons who suffer with Fibromyalgia Syndrome. There are times when you look forward to a certain season, maybe because it is your favorite or because of a special holiday. However, when winter is prolonged with very drastic cold and snowfall, it eventually gets deep inside you. It is as if winter is deep within your bones.

The instinct for survival becomes frantic. You want to feel the warmth of the sun and warm breeze on your face and skin. You feel a need to banish the cold from your system and let your body heal and rejuvenate. There is a compelling need to shed the extra blankets and layers of clothing to let the cold and the illness dissipate. The smell of earth, green and alive, lingers in your senses awaiting the breath of the first flowers of spring. Unlike the smell of muscle rub and liniments that surrounds the haven you refer to as “my bed”.

Open your curtains wide and let what sunshine is available come through. Clip a branch or two from a crabapple tree or forsythia bush and jump start the blooming process. If you use essential oils or aromatherapy in your home, change from the lingering scents of winter to that of spring. Citrus aromas are good for an energy booster and all around well being.

If possible, start planning simple changes in your décor and yourself. Change your wallpaper or screensaver to bright fresh theme. Try fresh spring tablecloths or placemats. A bright throw pillow or simple muslin curtains that let in more light. Put on a bright T-shirt underneath a cardigan sweater. Try a lipstick from a coral palette.

Even though it may be freezing outside, on a sunny day plan an indoor picnic with the help of your family. Serve potato salad, hot dogs, fruit salad, etc. (some serving suggestions) Take some photos of this event and put one in an inexpensive frame next to your bed with a vase of artificial spring flowers. You can also use sound to enhance your mood. Try listening to nature sound cd’s, such as bird songs, ocean waves, etc.

Every little bit can help with the seasonal affective disorder that afflicts so many of us living with Fibromyalgia. Try some!

My Daughter's Observations in Poetry Form

This Mother of Mine

She sits all alone
Just in a blank stare
You can tell by her face
The pain’s always there

She never complains
Hardly says a word
I wish I could help
To make it not hurt

Some days it’s not bad
She can get through
Some days are worse
She can barely move

She does what she can
Then a little bit more
She does what she needs to
No matter how sore

She’s the best person I know
She never stops trying
And no matter how bad
She doesn’t start crying

I wish I could help her
Wish I could take her pain away
But even though I wish it wasn’t
The pain’s here to stay

She never stops fighting
She tries to be okay
And even when it’s terrible
She’s always so brave

She’s so amazing
All of the time
I’m so glad she’s here
This mother of mine

ByLauren

My Remedies for Pain

There are some remedies that work for me when I'm having severe Fibromyalgia Pain. Whether it be Trigger Points or Tender Points.

Trigger Points- An area of tenderness that shoots pain to other muscles.

Tender Points- an area of tenderness in the muscles, tendond, bony prominences, or fat pads.

1. Take or use some form of anti-anxiety. There are many herbal teas or essential oils that can help calm and relieve anxiety.
2. Take a hot shower or bath and let the water soak the areas of pain
3. Apply a topical muscle rub or other product you like to the offending area in a circular massaging motion starting with small circles over the area and continue to extend the circles outward. Even though it is painful, the severity will ease. I like to use Biofreeze.
4. Take an analgesic or pain medication that you have been prescribed by your physician. You can do this before the hot shower or bath or after it depends on what medication you are taking. If you are taking a medication that causes drowsiness you don't want to take it before you are standing in a hot shower. The heat will make the effects of the medication stronger.
5. Rest and relax!!!

Fortunatley I have a very dedicated spouse to help me. The massaging of the painful areas can be excrutiating for a very short time. But you will feel relief.

The pain should start to diminish. The main factor of this treatment is the rubbing and stretching of the tender or trigger point to ease the bundle of pain.

DEPRESSION AND REMORSE

Depression is a big player in Fibromyalgia or any other chronic illness/disease. You need to discover withing yourself if the problem is depression or remorse.



Remorse is regret for something lost. Remorse parallels grief. If you have lost something very important you will feel sadness, grief, and heartbreak among other emotions. What if you lost yourself? Does that constitute depression or remorse? When you have feelings of guilt or "ownership" about the chronic illness this may lead to remorseful behavior and thoughts.



Any chronic illness has the capacity to cause clinical depression. This is a mental disease for professionals to treat. What I'm talking about is your depressive thoughts, emotions, and behaviors that you surround yourself and your loved ones.



The reason I believe remorse is more the correct term is because the illness has caused many losses. The loss of activity, social experiences, financial, professional, and of course, personal.

Could I have been responsible for these losses for not listening to the warnings my family, body and mind were trying to tell me prior to my catastrophic health changes? Now that I look back on the circumstances, the answer is yes. Yes, I needed to make changes in my lifestyle and profession before I was FORCED to do so. If I would have made healthier stress managment tactics, more time for exercise, better nutrition and sleep habits, along with pleasant social gatherings, I might have survived the health upset a little better, without the need for drastic change.



It is said, you cannot go back, however, I believe if you mentally review what your role was in the beginning of the health changes you will find things that you can apply to present day to prevent further damage to the life you have now! Life is a gift. Treat your life as the most precious gift you have. Live everyday with happiness. Learn from your remorse and regret and apply the positive to the NOW!

ALIVE OR LIVING

To me there is a major difference between these two words. Living is "not dead", it is going through the motion of life, doing what must be done, and displaying socially acceptable behavior and emotions. Living can be robotic and without individualized thought processes and emotions. This can happen with chronic pain and fatique. It is very easy to let oneself slip into that abyss, especially when so many lifestyle changes can occur because of the Fibromyalgia Syndrome. One can become isolated and recluse. Participating in very few social and family functions with false enjoyment due to the misery the body is providing.

Your day may be filled with doctor appointments, medications, and other remedies to try to capture some comfort. The haze of pain surrounding everything you do distracts from the enjoyment you want to feel. The financial burden from loss of the ability to pursue your career, the catastrophic amounts you must pay for medical visits and medicines takes what little self worth you might have because of the difficulty you are placing on your loved ones. Self-worth and self-esteem are huge problems for a person with a chronic illness. The fight you harbor within yourself to maintain what little you have can be exhausting and provide very depressive results. This battle must be continuoulsy fought to be ALIVE!

To be alive you need to feel passion, love, happiness, joy and yes, sorrow and discouragement. One must find an outlet for the illness to display itself peacefully. Whether this outlet is spiritual, a simple hobby, or a compaion, be it another person or a best friend in an animal, you must find that contentment, no matter how small it may be, to maintain being ALIVE with this illness. Joy can be found in may ways. I feel the most important way is through being thankfull for what you do have and not taking these important gifts for granted. Many individuals I come in contact with that have been diagnosed with CFS/FIBROMYALGIA are allowing themselves to feel pity and not thanks. I am not suggesting it's an easy task to be thankful, however, it is a task that can be accomplished within oneself or help from another.

Ponder these questions; How has CFS/FIBROMYALGIA made your life better? How has it given you the opportunity to make a difference in someone elses life? When you can answer these questions positively, you are on the road to being ALIVE.

But pain... seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?
Lois McMaster Bujold, "Barrayar", 1991

My Mysterious Companion; Reflective Thoughts

I’ve acquired a constant companion unbeknownst to me how or why or if I was given a choice.

IS IT FRIEND OR FOE?

That depends on both of us.
We continually wage war for control of my life.
Regardless, my companion is here and doesn’t give the impression of departing anytime soon.

The daily battering of pain and fatigue is its main control factor.
My continual search, sometimes frantic, for various modalities of relief is my path for defense.

However, just like a virus, the mutations it develops to my defense repertoires are unending.
The disorganized treatment catalog that I have cognitively created during my lucid and “fog” moments is running out of reference pages.

Others cannot see my companion; not family, friends, or loved ones.
They only see the results of spending time with this mysterious influence.

They view the nap I insist I need after retrieving the mail from the end of the driveway,

or the aroma of muscle rub that lingers on everything,

unlike the intoxicating seductive scent of an expensive perfume worn by a beautiful woman.

The mismatched, oversized clothes I don daily for comfort,

ease of dressing and undressing,

and to accommodate the ever increasing
portly figure are also part of the makeover my companion suggests will work best for me

Where did I misplace the physique of that long-forgotten dancer

and fitness instructor I once was?
I view myself in the mirror and question, “are you in there?”
Of course, I don’t receive any recognizable answer from this stranger.

I can’t seem to find myself in a new brand of hair dye, cosmetic

or outfit from a “large size” Women’s mail order catalog.
Oh, and forget attractive leg enhancing shoes.
Now my search for fashionable footwear falls along the lines of orthopedic bowling shoes in various bland colors.

In relation to feet and footwear,

there needs to be a way to wear a frozen bag of gelatin on your feet to ease the painful, swollen, burning, tingling, needles and pins sensation that dictates my form of ambulation to appear like I’m walking on glass shards and my facial expression to resemble a wax museum horror figure.

Hygiene!
Why, if I am going to have this particular jokester for a companion, did I have to be born in to a culture with an over obsession with hygiene perfection?
In order to accomplish this standard

I need the equivalent of an advanced technological car wash.
I would have the option of the basic wash and rinse, or preferably the deluxe addition;

sudsy wash with soothing shower gel and pulsating massage jets,

rinse with mineral waters from the Dead Sea,

softly blowing warm air with a gentle buffing for drying,

and last but not least, a top coat with muscle pain reducing liniment.

As far as hair and make-up, I would rather wear a wig and apply a mask!

I once was considered by my own standards and by those of family, friends,

and peers as very intelligent,

capable of multi-tasking,

very knowledgeable regarding my profession and a perfectionist in my career.

I was exceptionally well educated in nursing diagnosis, and treatment care plans.
I enthusiastically found happiness in being an advocate

for the injustice that befalls on the elderly.
Much to my chagrin, I have come to resemble my patients

with no idea on how to help myself.
Could this be another example of a ludicrous incident invoked by fate?

My companion continually challenges the verbal expressive, memory,

and spatial relation portions of my brain.
I have labeled animate and inanimate objects, people, places, and animals

with names only my linguistic dictionary understands.

I have gotten lost in my own backyard.
I have jumped from task to task

because I cannot remember what I was doing in the first place.
I have cooked on the stove without pots, pans, or even food for that matter.

I derived that leaving notes would defeat this demon,

but I only succeeded in forgetting either where my notes were placed or what they meant.

Not only have I created a whole new book of names, and a new foreign language dictionary,

but I have engineered my own directional compass.
Experienced mariners and even Galileo himself

would not be able to determine my navigational system.

My family has established many a charting templates for me;

they work, if I remember to apply the all conclusive check mark...

Like I have established earlier,

my companion is extremely adaptive to all rebuttals I have tried to apply.
This elusiveness to a given pattern has challenged me more than anything

I have ever sought out to accomplish.

Physicians make reference to the need for a deep REM sleep cycle

to help break the redundancy of the syndrome.
The only thing left for me to try in lieu of the medications, teas, herbs, baths, massages and relaxing audio, is to contact an experienced professional magician to suspend me in air to avoid any contact on the “pressure point” areas while an anesthesiologist is on stand-by to administer the correct deep sleep medication.

Wouldn’t the insurance company have fun with that claim?

Oh, how I wish I was completed with the vast list of symptomatic baggage my companion has applied to my backpack,

but I haven’t touched the tip of the iceberg.
I should invest in Samsonite to help me carry all these accessories

that I really don’t need or want during this adventure in life.

Nausea, irritable bowel, constipation, incontinence,

overactive bladder, migraine, etc,

aren’t these all words comprising the sixty second commercials that interrupt the program I may want to watch to distract myself from the unyielding pain?

If this is so, then why are these words being utilized by me on a continual basis with all the corrective medications in my cupboard?
Surely it is not to expand my vocabulary or compete with the advertising gurus.
Instead, they are part of the package deal from my companion.
It’s like an infomercial;

“You can have all this for $19.99,

but wait, if you act now we will double this offer”.

I have often heard from various people including psychiatrists and motivational speakers to keep your head up, walk tall, and look ahead.
Regardless of how I try to assume that posture,

I have come up close and quite personal with the ground.

Falling is part of my mobility pattern.
Usually I cannot find an elemental factor that resulted in falling,

so I conclude my companion has either tripped or pushed me.

Fortunately, I have not suffered any severe injuries as of yet,

except for the side splitting pain from laughing at myself.

Even my farm and domestic animals look at me with questionable humor.
My family has elected to walk ahead of me so as not to be associated

with the public displays of my humorous acrobatics.

Mobility aids do not offer much help;

they are just an additional prop that adds to my performance.
The most humiliating aspect of the fall is crawling to find something to use for leverage to get myself off the ground.

Pretending to search for a nonexistent contact lens usually distracts the bystander.

Depression, is it a state of mind, a subjective or physical symptom?
I believe that it is all three depending on how my companion applies the term to my life,

using all the variations of the word in a play by play scenario.

Feeling sad, despondent, a reduction in activity,

a reduction in physiological vigor,

inability to concentrate, insomnia, hopelessness, despondent,

and last but not least, “It’s all in my head”!

Let’s see, how should I deal with this?
Do I really have to deal with it?
Don’t I deserve to feel this way!

Why, with everything else that I have been dealt,

do I have to take on this giant word with all of its definitions and implications and address it?

With all my life changes, can’t I be depressed or even turn this into anger if it suits me!
Why do I have to even treat this symptom?
Isn’t my right to want to delve into it with all my soul as a source of temporary comfort despite the fact that it is “unhealthy” and will hinder my healing process?

What healing process are we referring to?
I wasn’t informed there was one!
I know it’s called the “grieving process” and I must succeed in completing each phase with a passing grade in order to pass “GO” and collect my $200.

Like I care, this is ME we are talking about!
Even though my companion views this syndrome as a very strategic game that the military should use for mind control, I do not want to play by the rules either.

If I want to cry, let me cry.
If I want to throw things, let me.
If I want to go out kicking and screaming, why can’t I?
This is more than the definition of depression, this is being put into a foreign body with no idea what in the hell to do with it.

Don’t try to understand, you won’t be able to.
I can’t even comprehend all these implications and changes.
I don’t want you to like me, because I don’t like me.
I want you to love me, tolerate me, help me, be with me,

and most of all, believe me, but don’t like me.

This isn’t me, and I want out!
If I accept this elusive and mysterious companion, it will never go away.
It will always be part of me trying to dominate my life and constantly challenging me.

I’m tired of being challenged.
I’m tired of the fight.
I want to be left alone with myself and only myself.
I don’t need or want this companion or whatever it may be.

I guess this is where the “Serenity Prayer”, or “Footprints in the Sand”,

is supposed to come into play.
However, there are moments when I don’t even want to put these prayers

and words into my repertoire.
If I do, it’s almost like a concession; an act of conceding,

or giving my companion the dominance it desires.


I wonder if concession will ever come resulting from plain old battle fatigue.
Or, maybe I’ll be strategically out maneuvered;

which will most likely be the reason for throwing in the towel.

Whatever the case, I want my companion to go away willingly.
No need for a flair for the dramatic, just quietly sneak away just like in snuck in.
I won’t harbor any resentment toward my companion.
I’ll be ecstatic just to say,” Good-bye”.
Good-bye to my elusive, mysterious companion.

Good-bye, Fibromyalgia!




These are solely my thoughts and feelings. They are not to be associated with any other person or affliction, nor subject to criticism or moral judgment even by those who have walked on a similar path. One may identify with my various descriptive plights; however, these words are my personal introspection.

Cathy Jean

June 16, 2005