If I Had the Energy, I Would Go Sit Down.

Constant fatigue was making me feel really tired..all the time.

They don't call it chronic fatigue syndrome for nothing.  I was one of the many fibromyalgia sufferers who also had debilitating fatigue symptoms.  Feeling so wretchedly tired all the time was a prime motivator for me to find some way to get better. The constant severe pain was awful but the unremitting fatigue was even worse.  When I first started on this quest, I was merely looking for a way to cope and improve enough to be able to get through the day.  It never occurred to me that the symptoms could be completely eradicated.

By now I had made my home environment as chemical free as possible.  I had stopped eating foods that contained trans fats, dyes, additives, and other chemicals.  I googled all the super foods lists I could find.  I started adding foods to my diet that were thought to help pump up the immune system, had anti inflammatory properties, and were in general supposed to be good for my body. 

Meanwhile, I kept coming across articles that said even whole, real, natural foods contained chemicals.  Fruit and vegetables are sprayed with pesticides.  Beef and poultry are stuffed with hormones and antibiotics. I thought, "Oh great!  What in the world does that leave for me to eat?"  Starvation didn't seem like a logical option so I searched for a better way.

I learned that washing fruits and vegetables thoroughly with soap and water gets rid of some of the pesticides. Just giving them a quick rinse under the faucet will not do the trick.  Peeled apples have less chemical residue than unpeeled apples.  I started looking for places that sold organic food.  Some organic foods can be found even at the big chain stores.  Local farmer's markets sell fresh produce.  Although it may have been sprayed with chemicals during the growing cycle, at least it does not have the added preservatives often used when foods have to be shipped long distances.  And some vendors sell truly organic chemical free food.  

Certain fruits and vegetables are not as readily penetrated by chemicals. Fresh pineapple, for example, has such a thick hard skin, that the fruit itself doesn't absorb as much chemical residue as say strawberries which have no protective skin, absorb anything that is sprayed on them, and are impossible to scrub.  So I eat fresh pineapple almost every day but strawberries only occasionally and preferably when I can find ones that have been grown organically.

Even if you live in an area without much access to organic food, you can still make smart food decisions.  Fresh blueberries, even if they have been chemically sprayed, will be a better choice than blueberry flavored something that comes in a box. 

Later I will discuss specific anti inflammatory and immune boosting foods.  For now maybe it will be enough to share that my mantra became:

Eat whole foods

Eat lots of fruit and vegetables

Eat less non organic beef and poultry

Add nuts

Dried cherries are my friend

Buy locally grown produce

Use fresh ginger and fresh garlic in everything

I Feel Good Now. I Hoped That I Would. Wow!

An Exhilarating Week

I have been sharing things I did to recover from fibromyalgia and chronic fatigue syndrome. Check out previous posts if you want to catch up.  I have a lot more to blog about concerning this process.  But I had such an awesome week, I couldn't wait to write about it.  When I was sick, I barely had the energy to get out of bed in the morning, It took a huge effort to complete a simple errand. Taking a shower was exhausting.  If I traveled, played with the grandchildren, or attended a meeting, I was immobile for two or three days afterward.  I had severe constant pain in my joints and muscles. I was having difficulty sleeping and a lot of other symptoms. Prior to the onset of this horrible disease, I was an energetic, cheerful, busy woman. After the onset, I felt doomed to spend each day of the rest of my life tumbling  into the ever increasing grip of fibromyalgia and chronic fatigue syndrome. Bit by bit I was losing my sense of the self I used to be.

After my chemical epiphany, I worked on ways to get the chemicals out of my house, out of my food, and out of my life. I started putting the right kinds of food into my body.  Today I have no symptoms at all.

Here is a glimpse of what a week with no symptoms looks like:

Wednesday:  cleaned house, exercised, did laundry, ironed, worked on writing projects, helped lead small group study at church that night, walked up the stairs instead of having to take the elevator

Thursday:  errands, packed for a trip, payed bills, traveled five hours from my home to visit family, read stories to grandchildren, rocked youngest to sleep

Friday:  more play time with grandchildren, visited with oldest one at her school which included lunch, story time, recess on playground, went to her basketball game that night, stayed up until midnight waiting for rest of family to arrive 

Saturday:  up early to get ready for middle grandchild's birthday party, went to party, chased children around, played after party, shopped for a new car, more rocking and story time

Sunday:  packed up, drove new car back home, unpacked, planned menus and made grocery list, worked on more writing projects

Monday:  up early, errands, exercised, drove downtown to meet husband for lunch, bought groceries, put everything away, straightened up house, welcomed out of town guests to our home for dinner

Tuesday: up early and off to help with ESL classes, back home to do laundry, exercised,  worked on writing projects, cooked, supper is in the oven as I type.

I haven't had any down time in seven days.  I am having no chronic fatigue symptoms or fibromyalgia pain.  Having the energy to stay busy and enjoy life is a gift I took for granted before I got sick.  I was unable to function normally for three years.  Being able to live my life again to the fullest with joy and relish is a blessing beyond my power to comprehend.

I am astounded and amazed.  I thank God every day for showing me what to do to get better. I don't know what a miracle is supposed to look like, but this feels like one to me! 

Do Not Put That Processed Food into Your Mouth!

Processed food is full of chemicals

I was on a mission to deal a knock out blow to my  fibromyalgia and chronic fatigue syndrome symptoms.  I was committed to getting as many chemicals out of my life as possible.  I had already eliminated scented products, started using more natural ingredients in my cleaning routine, and changed my personal grooming supplies in an effort to get toxic substances out of my life.  Check out my previous blog entries if you would like more information.

Now I started thinking about the things I was putting into my body every time I ate.  I examined the labels on all of the processed and packaged foods in my pantry and refrigerator.  These products were loaded with artificial dyes, artificial sweeteners, preservatives, and chemical additives with names I could barely pronounce.  I grabbed a garbage bag and started the great food clean out.  I tossed everything that was processed and/or had added chemicals.

 I made a list of foods to remove from my daily diet.  Here are a few examples:

lunch meat and bacon - full of nitrates 

hot dogs - chemicals, dyes, nitrates

sodas - little more than chemicals in a can

packaged cookies and candies - dyes, preservatives, additives

artificial sweeteners - not a natural product

Some of these items I liked - a lot.  Sometimes I was tempted to consume them.  Then I reminded myself that I wouldn't eat arsenic or drink strychnine.  For me, chemically laden foods were potentially just as toxic.  I confess that over the past two years I have eaten an occasional hot dog and washed it down with a soda at a picnic. I have taken a small bite of something else on my forbidden foods list at a party.  But this happens only once every few months, not once a day.

By this point in my quest to get better, my fibromyalgia pain was improving.  Some days I had only slight discomfort. This encouraged me that I was heading in the right direction.  But I was still having acute flareups in which the pain became quite severe.  There had been no improvement in my chronic fatigue symptoms.  Most days I was still having difficulty putting one foot in front of the other. I had taken a lot of things out of my life. I discovered I was going to have to put some other things into my life before I got better.



.   

Toxic People Will Drive You Nuts

Some people are toxic

I am blessed to have a great support group of family and friends who helped me when I was too sick to help myself, encouraged me when I started investigating ways to get better, and who have celebrated with me as I have recovered.

However, there are also a lot of negative people in this world who can be as toxic to your well being as the chemicals in your environment. These may include coworkers, friends, acquaintances, medical personnel, family members, or opinionated strangers.  You will have to decide how to deal with these people and the situations they create in order to maximize your recovery possibilities.  These folks fall into several categories.

The Unbelievers

Because fibromyalgia and chronic fatigue syndrome have no obvious outwardly identifiable signs of illness, there will always be those who refuse to believe you are really sick.  They try to cajole you into going on a shopping trip on days you barely have enough energy to get out of bed and take a shower.  They suggest you get up and clean your house on days you are having so much pain that it takes every ounce of strength you possess to keep from crying and screaming.  They tell you that your fatigue and pain are all in your head and you just need to shake it off and move on.

The Know-It-Alls

Some people are incapable of hearing about your illness without announcing that they have the perfect solution to your problem.  If you would only try this medicine, take this supplement, do what their cousin's husband's next door neighbor did, you would feel better.  I always appreciate hearing other sufferer's thoughts and ideas and collecting information about things to try that might help me feel better. But people who are not sick, have no background knowledge of this disease, and yet insist they have the perfect answer for your every need can be quite irritating.

The Polluters

Other people will refuse to cooperate in your quest to remove chemicals from your environment and diet.  They will demand you eat food that you have determined is not good for you.  They insist that one bite can't hurt you.  They will drench themselves in perfume after you have politely explained you need to stay away from scented products.  They will smoke around you even when you have asked them not to.  Cigarette smoke contains over one hundred toxic chemicals.  It is essential that you do not smoke yourself and that you avoid second hand smoke.

The Blockers

And then there are those folks who will throw obstacles into your path.  They make negative comments about you and your illness.  They find something wrong with every single thing you try to do to move toward recovery.  They discourage you by their words and actions and attitudes.

What can you do about those people who are not helping you at all but are in fact driving you more crazy with each passing day?  

This depends on who the person is and what the situation is.  But it is important to remember that you are the one who holds the keys to how much control you allow negative people to have in your life.  Here are a few ideas.

If your doctor is skeptical that your are sick or has no helpful suggestions regarding your treatment, look for another doctor.

If your aunt adamantly refuses to quit drenching herself in perfume every time you see her, limit your visits to her house.

If your coworker will not quit smoking in the break room, talk to your boss about instituting a no smoking policy in your office.

If your neighbor constantly puts you down, offers offensive opinions about your condition or is always negative about your illness, curtail the amount of time you spend with her.

If a stranger makes an inappropriate comment, decide in advance that you are going to smile and be kind even if they are rude.  No one has the power to make you feel bad about yourself unless you allow them to do so.  When my disease was at its worse, I always used the handicapped stall in public restrooms because my pain was so severe I needed to hold on to the bars in those facilities.  I was greeted with disapproving stares on more than one occasion when I emerged from the stall because I didn't have a cane or a wheelchair.  I always gave those scowling faces the most radiant smile I could muster. 

If the discouraging, uncooperative, negative person is a close family member and limiting contact is not an option you may have to try a different approach.  Information and patience are two good strategies.  The more the problematic person understands about your illness and the things you are trying to do to get better, the more cooperation you may get.  This often will not happen overnight so you have to be patient while waiting for that person to see the light.

Ultimately, I had to assume responsibility for my illness, my response to it, and my efforts to move toward recovery.  After all, making drastic changes in my lifestyle was my decision, not someone else's decision.  Sometimes I had to miss a party, avoid eating at a certain restaurant, avoid an event, or not attend a family gathering.  I recognized that every single person in my life was not required to make changes just because I was making changes.

I hope you have more positive people in your life than negative people.  I encourage you to find creative, helpful ways to deal with toxic people as you move toward healing.

Finding Your Support Group

You need the support of family and friends.

I was making changes in my daily lifestyle and gradually seeing some small changes in my fibromyalgia pain level.  I knew other people with fibromyalgia and chronic fatigue syndrome and wanted to share what I was finding out about possible causes and possible paths to recovery.  The feedback was interesting.  Some people were encouraging.  Some were skeptical.  Some added their ideas and thoughts to the information I was collecting.  

Acquaintances who did not have fibromyalgia or chronic fatigue syndrome sometimes had more difficulty understanding my symptoms and the depth of my despair at feeling horrible all the time.  So I tended to try to hide how sick I was from the general public on those days when I felt well enough to attend events or run a few errands.  It was easier to pretend all was well than to go into the details regarding my disease. 

I am fortunate to have an awesome family who have been extremely supportive.  When I was too tired to get up out of my recliner during family gatherings, they let me rest and pitched in to do what was needed.  When I started eliminating chemicals from my environment, they made sure they had not used any strong cleaning products immediately prior to my visits to their homes.  I have a great group of close friends who put away scented candles and removed potpourri before get-to-togethers at their houses.   

Because I was reacting so strongly to perfume and cologne, I have dear friends and family at my church who have became my personal perfume patrol.  They signal me if I am about to sit down next to someone who they have noticed is wearing some scented product that day so I can look for another place to sit. 

I eventually made a lot of changes in my diet which I will discuss later in this blog.  I needed support from my friends and family as I incorporated these food changes into my daily routine and they gladly gave it.  When I decided to blog about my journey to healing my family encouraged me to go for it.  

The upshot is that you cannot take this journey alone.  You need all the support you can get while dealing with your illness and encouragement while you are attempting to change your lifestyle and move toward recovery.  If you are not getting that support from family and friends you need to find it somewhere else.  There are fibromyalgia and chronic fatigue syndrome support groups in many communities and online.  Research what is available in your area.  Find someone somewhere who will be your advocate.

I would love for this blog to become a place where fellow sufferers can get support from one another, ask questions, and share ideas.  We are linked to one another through our pain.  We can rejoice with one another as we discover ways to get better.

Yikes! I'm Dying Myself to Death

I used to be a redhead

Eliminating chemicals from your environment
may require changing your personal grooming routine

I had eliminated scented products and started using cleaning products with natural ingredients to see if this would help my severe fibromyalgia pain and debilitating chronic fatigue syndrome.  Next I started investigating the things I was putting on my body each day. The list was quite long:

bath soap

deodorant

shampoo

conditioner

hand lotion

moisturizer

makeup foundation

powder

blush

eye shadow

mascara

lipstick

I started reading labels and searching for alternatives.  I tried all of the hypoallergenic and scent free makeup products I could find until I settled on the ones I thought would work for me. There were also a lot of hypoallergenic and/or scent free hairspray, moisturizer and lotion options for me to try.

I read that bath soaps and shampoos that are white and don't contain added scent have less chemicals than those that do so I changed brands.

I found that toothpaste that is white and does not contain added flavoring has less chemicals so I switched to a kind made for sensitive teeth.

One day I was looking in the mirror combing my beautiful red hair when it dawned on me that I achieved this lovely shade by having chemical laden color applied to my hair every month at the salon.  So I went to the beauty shop and had my hair cut in a short style so the color would grow off more quickly. I had been dying my hair for so long I wasn't sure what the natural color would be.  For a while I sported a funky punk rock style with red on the ends, gray at the roots and a pleasantly surprising amount of brown still scattered about.  The color eventually all grew off and I am back to my natural color and enjoying my new look.

You can find all kinds of personal grooming items with less chemical content at your local drugstore or discount store and additional options at health food and organic product stores.  

After just these first few steps I was already starting to notice a decrease in my pain level on some days but I still I had days with severe pain and the chronic fatigue was still keeping me from functioning normally.  But I still had a lot of things to try in my quest to change my lifestyle.  Recovery was coming.  I just didn't know it yet.

Organic Cleaning Products

Chemical Free Cleaning Options

There are a lot of natural ingredients you can use to clean your house.

When I first recognized that the hundreds of chemicals I came in contact with daily could be contributing to my fibromyalgia pain and chronic fatigue syndrome symptoms, I didn't realize how many things I was about to have to change.  It's a good thing I didn't or I might have given up before I got started.  However, since I was learning new things each day, I was able to make changes slowly one by one.  So pace yourself.  Don't feel like you have to do everything at once.  

After I had gotten rid of all the scented products in my environment, I focused on cleaning products next.  I encourage you to get out your current supply of cleaning products and read the labels.  These are the ingredients you are inhaling, touching, and covering the surfaces of your home with every time you use these products.

There are a lot of alternatives to prepackaged chemicals that you can use for cleaning your house.  Google "chemical free cleaning,"  "organic cleaning," "non toxic cleaning," or other similar phrases and you will have access to a ton of great ideas.  Here are a few of my favorites:

All purpose cleaner:  Mix 1 part plain white vinegar to 2 parts water and put in a spray bottle.  Vinegar at this concentration kills as many germs as most commercial products.  I use this mixture to clean surfaces in the bathroom and kitchen, counter tops, mirrors, chrome fixtures, doorknobs, light switches, appliances, the stove top, sinks, and anywhere else you would use an all purpose cleaner. 

Air freshener:  Put baking soda or vinegar in a small dish and leave in the area where you want to absorb odors. If you want the kitchen to have a nice smell, try simmering water with cinnamon sticks and ginger on your stove. 

Garbage disposal cleaner:  Put a slice of lemon, lime, or orange in the garbage disposal and turn on just long enough to partially grind up the fruit.  Let it sit for at least one hour before grinding completely.  Then flush with cold water for a few minutes.

Drain cleaner:  Pour one cup of vinegar in your sinks.  Add a few tablespoons of baking soda.  Let sit for at least one hour. Then flush with cold water.

Grout cleaner: I am still discovering new cleaning options. I just read a hint about using hydrogen peroxide to clean mold from tile and grout.  It said to mix one part peroxide with two parts water and put in a spray bottle.  I have added hydrogen peroxide to my shopping list for this week so that I can try out this new idea.

There are natural alternatives you can use to clean every single thing in your house.  Once you find out which options you like the best and have made the switch, you will have eliminated a whole category of chemicals from your environment.  If there is one favorite chemical laden product that you just cannot bring yourself to replace, don't let that stop you from making at least some changes.  Every chemical you get rid of brings you one step closer to recovery.

Are there any non toxic cleaning products you recommend?

The Chemical Connection

Chemicals Contaminate Everything

You will never change how you interact with the chemicals around you
until you change your attitude about the harm they can cause.

Even after I read article after article about the possibility that chemicals could be the culprit for my devastating fibromyalgia pain and debilitating chronic fatigue syndrome, it took several months for me to summon up the will to radically change my lifestyle.  I kept trying to rationalize.  After all, if this was the root of my problem, why weren't more doctors recommending this course of action?  Why weren't more people getting rid of things in their environment that could be making them so sick?

I decided maybe one reason this hasn't happened on a large scale is because not enough people have been willing to alter the way they live.  Sometimes we are too ingrained in our routines to be willing to make drastic changes. Getting rid of the chemicals around me couldn't hurt anything so it met my primary requirement of "First do no harm."  Resigning myself to feeling horrible all the time was not an option.  So in January of 2010 I made a commitment to find out where the chemicals lurked, how to get rid of them, what to substitute in their place, and wait and see what happened.  

I did not expect this to be a quick fix.  After all, I had been exposed to hundreds of chemicals every day for decades.  It made sense to me that it would take time, maybe a long time, to notice any difference.  I had nothing to lose and potentially everything to gain.  

I started with what I felt would be the easiest group of chemicals for me to eliminate:  anything that has a scent.  I had already removed a good many of these types of chemicals from my environment due to previous allergic reactions.  So I was surprised how many things in this category I still needed to get rid of.  Scents are created by adding chemicals to products.  Even so called "natural" scents require chemicals to bind the scent to the product.  It is relatively easy to create a scent free environment in your home but it may require that you change almost every product you use.  

Scented products you will have to eliminate include:

perfume

air fresheners

incense

scented candles

potpourri 

You need to check the labels of other products to see if they contain a scent including:

makeup

hairspray

deodorant

laundry detergent

cleaning supplies

bath soap

shampoo

hand lotion

Fortunately, almost everything on this list comes in an unscented version.  There are hypoallergenic, unscented makeup lines and laundry detergents free of perfume and dyes.  Shampoo and soap that are white tend to have less scents and less chemicals than those that have color.  There are natural cleaning products you can buy or you can make your own cleaning products using natural ingredients.

There would be many more things I would eliminate and many more things I would add before I recovered.  But this was the first small step.  I felt a small stirring of something I hadn't felt in over a year: hope.  

Have you had any adverse reactions to scented products?

Going for the Cure

Recovery is possible.

There are many things you can do to increase your

chances for recovery from fibromyalgia.

I had been to the doctor for a checkup, had appropriate lab work evaluation, and been diagnosed with fibromyalgia and chronic fatigue syndrome.  My doctor tried me on a variety of medications to help control the pain but I had adverse reactions to all of them. After living with severe pain and debilitating fatigue every day.for a year, I finally climbed out of the fibro fog long enough to ask myself, "Now what?"  I had two choices: resign myself to living the rest of my  life as a semi invalid or start looking for better ways to cope.  I started reading and researching everything I could find on fibromyalgia and chronic fatigue syndrome.  The internet was both a blessing and a curse.  There was endless information available but how in the world was I supposed to find the right path for me in the middle of such an overwhelming amount of contradictory advice?

I am a person of faith so I prayed for spiritual guidance.  Slowly a sensible plan that seemed logical to me began to emerge.  I decided my filter for trying different therapies would be, "First do no harm."   Some of the suggestions I read about were bizarre, potentially harmful, or came with too little information about possible complications.  So ordering some exotic tea leaf from a foreign country over the internet that had no information about its contents or side effects was marked off my list.  So was wearing bracelets made of different metals and other similar ideas.

However, I kept seeing one thing over and over and over again that intrigued me.  Some people feel that fibromyalgia and other similar diseases may be caused by exposure to chemicals that are so prevalent in our modern world.  

These chemicals are everywhere

 in our environment

cleaning products

personal grooming products

processed foods 

Since I already had a problem with allergic reactions to a variety of chemicals, it seemed plausible to me that some of these chemicals could be causing reactions that were producing my fibromyalgia and chronic fatigue syndrome symptoms.  I couldn't do much about the chemicals that were in the environment outside.  But I could certainly work on the ones I was being exposed to in my own home.  This plan would take time and involve my willingness to change my lifestyle but there was nothing about it that could harm me.  

As time went on I discovered other ideas involving food choices, movement, sleep, medication, pacing, and attitude.  These also could be incorporated into my recovery plan without causing any harm.  Fibromyalgia and chronic fatigue syndrome currently have no known cure.  But I decided to not give up or give in to despair.  I made a commitment to myself to at least try.  

It took two years.  Sometimes I wanted to quit trying because I saw no immediate results.   But I decided to stick with the plan.   It worked. Today my symptoms are gone.  I feel great.  I am amazed.  And I am thankful beyond words.

Have you read about any interesting possible causes for your symptoms?