Juvenile Fibromyalgia

     My daughter will be fifteen this week.  It has been nearly a year since she was diagnosed with Fibromyalgia.  Listening to her symptoms, I kept hoping they were just growing pains or the flu.  I kept hoping, but I knew only too well it was Fibromyalgia. 

     Juvenile fibromyalgia ia rare, but so is my daughter.  She is gifted with words and writes stories and poems that rival published authors.  She is adept at seeing the true beauty in everything.  She photographs ordinary objects and shows us their true essence.  She manages to bring out the best in people, even when they are suffering.

     Juvenile Fibromyalgia is rare, but our medical experience is not.  The pediatrician doesn't know anything about this disease.  The suggested rheumotologist only works with adults and feels uncomfortable treating a teenager.  The internist feels the same way.  The juvenile reumotologist doesn't believe in the disease and tells her to exercise more, go to counseling, and stop taking naps. 

     What happened to the Hippocratic Oath to not cause any harm?  My daughter has gone from a 4.0 honors student to dropping out of school because of the pain and fatigue.  Telling her to work through the pain because "it is only pain" does not help her.  Exercise is good, but so is being able to complete daily activities without crashing.

     When questioning her about her family life and learning she had a pet turtle, the rheumotologist asked her if she licked the turtle shell!!!  Really???  This is what you think a fifteen-year-old honor student would do?  She is supposed to be an expert on this disease and children.    

     Adults with Fibromyalgia take medications to take the edge off the pain so they can function.  Why is it different for a child?  I believe in taking the least amount of medication possible, but kids and teens feel pain, too.  Unfortunately the pain won't wait until her magical 18th birthday to suddenly begin.  It is naive of adults to believe otherwise.

Strange Symptoms

     Fibromyalgia does crazy things to your body.  We drive doctors crazy asking about bizarre new symptoms.  Coincidentally all of our fibro friends have the same symptoms and none of us had them before we were diagnosed.  These are a few of the symptoms that surprised us the most.

     Fingernail problems!  We both had long, beautiful nails that we loved to polish.  Once the Fibro hit, our nails totally changed.  Now long ridges push the nails down and curve them into all kinds of annoying shapes.

     Sensitivity to touch!  Suddenly everything hurts our skin.  A loving hug or pat on the back feels like we have been hit with a stick.  Clothes are painful to wear because they touch our skin.  Bracelets are the worst!  So much for accessorizing that cute outfit for school.

     No longer being able to tell left from right!  It's so embarrassing to be asked for directions and telling someone to turn the wrong way.  Even when we manage to give the right direction, we have to think about it for a minute.  People start thinking we are a little "slow."

     Falling over for no apparent reason!  It doesn't matter if we are standing still or walking.  One minute we are fine and the next we are on the floor.  One of the scariest examples for my mom was at school.  We were pulling up to the curb to pick her up.  She was walking towards our car, but suddenly fell on the ground in front of the car.  Luckily we were already stopping. 

     Losing your legs!  You have been sitting down for awhile and try to stand up, but you have no legs.  They aren't asleep.  They aren't numb.  They don't hurt.  They just aren't there.  You can't feel a thing.  It goes away after a few minutes and your legs feel like normal again.

     Becoming a weather forecaster!  We can tell the weather better than the forecasters on TV.  When a storm is coming or the pressure changes, we know it instantly.  We feel pain in every part of our bodies until the storm gets here, and then we feel fine again.

     Pretty strange, huh?  It sure makes life interesting, that's for sure.  Have any weird symptoms to share?  Feel free to post them to our comments below.  
   

Fibro Fog

     Fibro Fog is a term that describes symptoms dealing with memory, concentration, communication, and learning.   The fog can last from a few minutes to several days.  It is usually worse during flare ups, stressful situations, or sensory overload.  Fibro Fog is one of our worst symptoms, but sharing our stories helps us laugh at ourselves and ease the fog.
    

What Happened to my Words?

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  All of us forget words sometimes.  Usually we forget names or difficult words we don't use very often.  When you have Fibro Fog you can't remember the words for objects you use all of the time.  You know that you know the word, but your mind is blank.  While telling my daughter what I packed in her lunch, I suddenly drew a blank.  I laughed and said, "Well, it's something good, I'm sure.  You'll have to tell me what I picked out when you get home."
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  Soemtimes the harder we try to remember a word, the more words slip away.  I have been known to say things like, "I wan't to see that movie with that one guy.  He was in that tv show that we saw awhile ago.  He just got divorced and now he's dating that actress..."  It drives my husband crazy.  :)  Luckily, my daughter and I are often on the same wave length so we can add words to the conversation for one another.
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  Another crazy symptom is thinking the right words but saying something totally different.  It took me a long time to realize I was doing this.  When people would tell me I was doing that, I thought they were joking or had misheard me.  When my students catch me doing that, I usually laugh and say, "I'm glad someone is still awake and listening."  They laugh and we move on. 

A Converation?

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  As you can imagine, Fibro Fog makes it difficult to have a conversation with people.  You may see us talking and suddenly forget what we were saying in the middle of a sentence. 
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  Sometimes we hear you talking but we have no idea what you are saying.  The words don't make sense.  If you suddenly see us frown or look annoyed, there is a good chance we are stressed about what is happening to us.  Try not to take it personally.  We will tell you if we are bothered by what you are saying.
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  Telephone calls are especially difficult.  We don't have your body language or visual cues to help us.  When the Fibro Fog is bad and I'm talking on the phone, I get very stressed.  My mind won't focus and I can't understand what your words mean.  When you pause for me to say something, it takes me a minute to understand what you said and then find the words to reply.  I don't mean to be rude.  I do care about what you are saying and I am listening. 
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  If you notice us talking slower than usual, it usually means we have Fibro Fog.  It helps us immensely when you talk a bit slower.  Trying to talk to a fast talker is stressful when you are lost in the fog.

Where Am I?

      We absolutely hate this symptom.  It is scary to be in a familiar place but have no idea where you are.  This happens often in places like the grocery store or parking lot.  Ever see the Seinfeld episode where they are lost in a parking lot?  That is what it's like when this symptom hits. 

    Number Nemesis

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  We cringe when you ask us for our phone number or address.  Sometimes we mix the wrong numbers together.  Once while on the phone with a stranger, I realized I had given her the wrong phone number and had to say it again.  She sounded annoyed and said, "Don't you know your own phone number?" 
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  Sometimes we add when we mean to subtract.  You may want to let someone else count out the change at the store or balance the checkbook if you have this problem.

If you have experienced Fibro Fog and have stories to share or helpful tips, we would love to hear from you.  Please leave your comments below.

 

Helpful Tips

     Modern medicine is an amazing gift, but sometimes it isn't enough. Fibro pain can be so intense, most pain killers won't even touch it.  These strong medications can cause harmful side effects that result in new medicines to counteract the original side effects.  Many children and teenagers are unable to take most medications. 
     We have gone through the same things and want to share a few things that have helped us.  We all have different symptoms at different times; our ideas may not work for you, but maybe they will inspire another idea that is perfect for you. 

Dealing with Pain

• We have found an amazing product called Relax Pack.  You can buy them in a variety of sizes, colors, and with or without scents.  This is very helpful if you deal with sensory overload like we do.  They can be heated or chilled.  I like mine heated in the microwave and my daughter likes hers chilled in the freezer.
  The owner/creator has Fibromyalgia and Chronic Fatigue Syndrome, so she understands our pain.  Not only that, she has an amazing attitude that always makes us feel better.  You can buy the packs online at relaxpack.com .  You can also buy awareness bracelets there.  All the proceeds are donated to National Fibromyalgia Association and CFIDS Association of America.  
• Another product that helps us is Aspercreme.  It is odorless so you can put it on before work or school and not worry about everyone noticing a strange smell.  It takes the edge off the stiff muscles in the morning and relaxes them at night so we can sleep better.  There are other great products like this on the market, but they were painful for me.  One type made me cold and then burning hot.  I was in agony for several minutes and it didn't help my pain at all.  However, it may work for you, so if one type doesn't work, try another kind.
• Warm baths.  Some people enjoy bubble bath or scented oils, but if you suffer from central sensitivity syndrome, enjoy the warm water without the additional chemicals and smells.
• Listen to music.  There are some interesting studies showing music helps alleviate physical pain in hospitals.  Putting on our earphones and listening to our favorite music helps us a lot.  It makes our flares less severe and go away faster.

Dealing with Sleep
     Sleep is a major issue for us.  With Fibromyalgia your brain never reaches Level 4 sleep (deep sleep).  Your brain keeps cycling through earlier stages of sleep, which makes you restless and easy to wake up.  Your body needs Level 4 sleep to repair itself.  When you wake up in the morning you feel like you haven't slept at all.  There are medications for sleep that you can take.  There are also many great ideas for improving sleep for the general public, but these are some specific things that have worked for us.

• Have several lightweight blankets on your bed.  Temperatures bother us, so we can easily adjust in the night. 
• Have a soft matress pad placed over your matress.  We love matress pads!  The pads help us get comfortable at night so we can fall asleep.  We are less stiff and sore in the mornings since we started using the pads. 
• Electric blankets or electric matress pads also let us control the temperature and sleep better.
• Cuddling with soft pillows or stuffed animals help us relax and go to sleep.

Dealing with Clothing
     Since our brains process pain differently, things that don't bother other people can feel excruciating to us.  Some clothes aggravate our pain and others really help us feel better.

• Soft cotton that doesn't bother our skin. 
• Silk and rayon are soft, but if you are sensitive to temperature, be careful.  They tend to make us feel very hot or very cold if we are in a room that isn't just the right temperature.
• We like looser fitting clothes that don't rub on our skin or make us uncomfortable when sitting down. 
• Wear layers.  This way you will be warm enough, but you can take off layers if you get too warm.
• Cut off the tags or buy clothes that don't have tags.

Dealing with Sensory Overload

• Go to the quietest place you can find.  At school, a bathroom stall works well because it is private. 
• Put your head down, close your eyes and take deep breaths.
• Counting backwards helps us stop stressing and helps us focus on something else.
• Avoid smells that bother you if you can.  Maybe there is a hall where kids spray lots of perfume and it bothers you.  Try to go down a different hall or go at a time when there are fewer kids in the hall.  If the Christmas cinnamon pine cones bother you at the stores, try going in a different entrance or holding your breath until you have walked past the culprit.
• Avoid loud sounds if you can.

Dealing with Stress

• Watch tv shows or movies that make you laugh.  Releasing endorphins makes us feel better. 
• Talk to supportive friends or family.  If they aren't supportive, there are tons of support groups online.
• Do something just for yourself every day.  It doesn't have to be a big thing.  It is the kindness to yourself that is important.
• Write about your feelings.  No one has to see it.  It is your safe place.  You can whine, feel sorry for yourself, complain, brag, rejoice.  We both write every day.  We feel so much better and have a lot less pain after we write.
• You can't blow bubbles and cry at the same time.  Use this tip when you don't want to break down.

 We hope you found an idea that works for you.  If you have a great idea, please share it with us in the comments below.  Sending you gentle hugs.  <3

Best Left Unsaid

Words are amazing things.  They have the power to heal and the power to cause permanent scars.  Sometimes we are at a loss for words, so we say the wrong thing at the wrong time.  Sometimes we are careless and say things without thinking about their impact.  If you know or love someone with fibromyalgia, these are things best left unsaid when you are trying to be supportive.

"I know how you feel." 

You may say this in the most supportive way, but this statement is best left unsaid unless you actually have fibromyalgia.  When we are not feeling well, we often get angry at people who claim to know how we feel.  We may strike out at you and yell, "No!  You DON'T know how I feel!"  (This is also true during childbirth, but that is a different story.)

"I know how you feel...I have..." 

This is even worse than the first statement.  Not only do you not know how we feel, you have suddenly turned the conversation to focus on you.  We love you and want to support you, but if we actually admitted we aren't feeling well (which we rarely do), focus on what we are saying.  After we have a chance to express our feelings, we promise we will focus on your situation.

"You don't look sick..."

Fibromyalgia is a chronic illness that varies from day to day and moment to moment.  It changes the way our brains process pain and amplifies pain signals from our nerves.  It affects our central nervous systems and affects our entire bodies.  You can't see it on the outside, but we are sick.  You wouldn't go up to someone with cancer and say, "You don't look sick."  A fellow fibromite replies, "Yeah? Well, you don't look stupid." 

"You look as bad as I feel."

When we aren't feeling well, it doesn't help to tell us that we also look awful.  Always the optimists, we may say, "Thanks, I'm glad you are feeling great today!"

"I get tired, too."

People with Fibromyalgia don't just get tired.  We know what tired feels like.  Fibromyalgia causes you to feel bone tired.  Your body is so heavy, you can't lift your head off the pillow.  Some days we can't even shower and dress ourselves without collapsing on the bed crying because that took all of our energy.  We can handle tired.  Picture Superman and Kryptonite.  That is our definition of tired.

"I read about this doctor (medicine, herb, exercise) ..."

We have doctors, sometimes many different kinds of doctors, taking care of us.  While we appreciate your love and support, we are often in so much pain we will try anything.  There are many people who are more than willing to promise us a miracle for the right price.  Most of us have tried just about everything.  And remember, just because it is natural or an herb doesn't mean that it is harmless.  Some of them interact with our medications and cause serious side effects.  We may smile politely and act interested, but this is another thing that is best left unsaid.  (Unless you are a doctor).

"You know, if you would only exercise more (lose weight, eat better, think positively)..."

When it takes everything you have to go to work or school day after day, it is hard to take care of yourself.  We know exercise and losing weight will make us feel better, but we also know that exercising today will probably make us crash for three or four more days.  When we need the little bit of energy we have to meet our daily obligations, we can't risk crashing for the rest of the week.  Many of the medications that give us energy and take the edge off the pain also cause weight gain.  We know you care about us and want us to feel better, but this comment won't motivate us.  It will only hurt our feelings and make us feel misunderstood.  This one is also best left unsaid.