Gifts for Fibromyalgia Sufferers

     Happy holidays!  If you are looking for the perfect gift for a loved one with fibromyalgia or chronic fatigue syndrome, you have come to the right place.  Although your loved one will enjoy any gift because it is from you, there are some gifts that are better than others.

Warmth
     People with Fibromyalgia often have trouble controlling their body temperature.  In the winter, most people get cold and warm back up when they come inside.  When we get cold, we stay cold for hours.  Because of this, we love anything that helps us warm up or stay warm in the first place. 

• Warm socks help us stay warm during the day or at the beginning of the night in a cool bed. 
• Our hands ache all day once they get cold for a few minutes, so warm gloves or hand warmers are always nice. 
• Scarves or hats help protect us when we have to go outside. 
• Giving your friend a warm sweater or a shirt that can be layered is a nice gift. 
• We love pajamas or slippers that we can relax in once we get home. 
• It is wonderful to get a space heater for work when you can't change the thermostat. 
• It is also nice to have a thermos of warm soup or hot chocolate for lunch. 
• We also love throw blankets because we get cold, but everyone else is fine.

Water
     Warm baths help ease our aching muscles and help us warm up.  We love bath time, so any presents to make that time of the day even better are wonderful. 

• Try a big fluffy towel or a soft robe. 
• Some people like scented candles, bubble baths, and bath salts.  A lot of people with Fibromyalgia have chemical sensitivities and get sick with chemicals that smell.  Check with the person you are buying for or get the unscented variety. 
• A cd of soft music is always nice.

Pain
     Anything that can ease our pain is appreciated. 

• We love herbal packs that can be heated in the microwave or frozen as ice packs. 
• Aspercreme is nice.  It works well and doesn't have the smell or burning sensation of other topical treatments. 
• We have found that music helps ease our pain, so a CD, I-Tunes card, I-Pod, stereo, etc. is always a fabulous gift.  On our worst days, we listen to music for hours.   

Entertainment
     Winter is a difficult time of year for us, so we have to spend a lot of time in bed or on the couch.  Anything that can help make this time more enjoyable is a wonderful gift. 

• Try a movie that your friend will enjoy.  We love comedies because we don't get to laugh as much as we used to. 
• Puzzle books are great ideas if your friend doesn't suffer from brain fog. 
• Books are always nice.  If your friend has trouble concentrating, audio books are a way to enjoy the book without the cognitive struggle of reading. 
• Materials for a hobby are always wonderful gifts, as well.

Time and Help
     Since winter is a rough time for us, a gift offering your time or help will be appreciated. 

• You can offer to shovel snow or drive them somewhere they need to go. 
• If your friend struggles with the shopping or laundry or cooking, offer to do it for them for a day. 
• Go over and help them clean their house or decorate for the holidays. 
• If your friend can't go out, offer to come over and visit for awhile.

Chronic Fatigue Syndrome

Many of us fibromites also suffer from other debilitating problems: migraines, irritable bowel and bladder syndrome, joint swelling, dry mouth, restless leg syndrome, dizziness, PMS, depression, panic attacks, scoliosis… the list goes on and on. My mom and I both suffer from other diseases besides FM, but in this entry I want to focus on Chronic Fatigue Syndrome and the misunderstandings that go with it. I don’t claim to be an expert, but this has been my experience.

CFS is another one of those invisible diseases that is diagnosed by examining the symptoms and ruling out any other possible causes. The problem is, the array of symptoms can be caused by many other things, such as sleep apnea, and all of them are difficult to treat. The irony of this illness, especially put together with FM, is overwhelming: chronic pain interferes with sleep patterns, and a lack of sleep lowers the body’s pain threshold. Weight gain, a side effect of many fibromyalgia medications, can worsen this cycle. So can depression and anxiety. Restless leg syndrome can also keep you awake all night, and, of course, there’s just plain insomnia to prevent you from sleeping no matter how exhausted you may be.

It’s not easy being a teen (gotta love those puns) with this disease. “Getting tired” is a common complaint in high school; teenagers’ internal clocks are set to stay up until 3 AM, while the real-world clocks are set to wake up at 6. Chronic Fatigue is not quite the same thing, though. I often go to bed at eight o’clock, long before most of my friends are even home, just so I can manage to get up the next morning. The exhaustion is debilitating enough that it keeps me from going to school. Parties and get-togethers take a whole day of planning, and I have to make up excuses to leave early or avoid sleeping over because it’s too hard to be away from my bed that long.

The cognitive impairment is like fibro fog times ten. When I have fibro fog, I stumble over my words, say things backwards, forget where we parked or what my phone number is. When I’m suffering from “fatigue,” I can’t speak at all. I see your lips moving, but I have absolutely no idea what you are saying – and even if I did I couldn’t answer you. People often mistake my blank stare for apathy or even anger, but it’s nothing like that! I want to know what you have to say, but I just can’t understand you. Sometimes, when it’s really bad, I can’t even hear you. And when I start crying it isn’t because of anything you did or didn’t do, it is because I’m frustrated. I’m frustrated at myself and my body because I care about you, I care what you’re telling me and I want to understand, and yet it seems like you’re speaking some totally alien language. Every time I start to grasp the meaning of the words they slip away.

I have heard it said that people suffering from this “fatigue” aren’t capable of completing a thought, but that isn’t true in my case. In fact, I can’t stop thinking; just because I’m unable to communicate any of those thought doesn’t mean they’re not there. I can write entire stories in my head, and I will even write music or practice my scales, picturing how to play a song on the piano, sometimes pretending to sing or fly. It’s almost like “zoning out,” but for hours at a time – my own built in coping mechanism.

There are many people who have a hard time understanding this disease; as I write this, I think of my friends. They know I have fibro and CFS, but it’s hard for them to comprehend what that means. They don’t understand why I never want to sleep over, or that when I joke about shaking because of the Pepsi I had with lunch, what I really mean is that I need to go sit down before I pass out. They don’t understand that it takes a while for me to react to what they say because I’m still processing the words, not because I’m faking the emotion. They are loving and supportive, and it’s not their fault they don’t get it. “Pain everywhere” is pretty self explanatory. “Always tired” is a little more misleading.

For more information,

http://fmcfsme.com/article_cfs10thingspeoplemisunderstand.php

is a wonderful article on what it really means to have CFS. It’s very useful both for those with and without the disease, and the first time reading it was when I finally realized that not only am I not crazy, I’m not alone, either.

The Copycat

     I never tried to get out of gym by saying I was sick.  If I had, I would hope to be as creative as a girl who said she had an Fibromyalgic knee the doctor found on an x-ray.  She must not know that x-rays do not pick up Fibromyalgia and it doesn't affect one location, but I love her creativity. 
     The ads on t.v. for Fibromyalgia are both a blessing and a curse.  Until the ads began, no one had heard of my disease.  Now when people discover I have it, they have a reference to start talking to me.  The ads also give a voice for an invisible disease, which is good since brain fog, pain, and fatigue, don't make us very good public speakers.  The ads also help drive companies to research and develop new medications that help make our lives a bit better.
     Unfortunately, these ads are also a curse for us.  All of the women on the ads are older.  I am not an older woman and they don't even begin to resemble my teenage daughter or the men I know that suffer from this disease.  The women on the ads talk about fatigue, but only in regards to the hobbies they can't do - such as painting or walking through Paris.  We barely manage to do our day to day tasks and our pain curls us up moaning on the floor.  The ads also convince people they know about the disease because they watched a thirty-second advertisement.  This leads to misunderstandings about what the disease really is and how it affects us each day - such as the copycat girl avoiding gym.
     I do love the fact that we have gained enough prominence to be the disease of choice for a girl trying to get out of gym.  It seems Fibromites have finally arrived!  

My Daughter

     I have a beautiful daughter.  She has a smile that lights up the room and green eyes that remind me of the ocean.  Mandy is even more beautiful inside.  She radiates love and goodness to everyone around her, so you feel happy just sitting near her.  She is a warrior who fights all inequities and wrongs she finds in the world.  She is gifted and her mind awes me with the ability to see in ways I can't even imagine.
     My daughter also suffers from juvenile Fibromyalgia.  This disease struck fast and hard.  She fights to do things that other people do with no thought at all.  They can get up from a chair to go to their next class.  Often, Mandy can't because her legs have stopped working.  While other kids are dancing, playing, or doing sports, Mandy's hands have frozen up and she can't get them to write anymore so she can do her homework. 
     Mandy was going to school online, but wanted to go back to a regular school because she missed her friends. She is so loving and sweet, she makes friends easily.  However, as soon as they ask her to come over and play or go to a party or go out on a group date, she is an outsider.  She can't count on her body to do what she needs it to do and is afraid of it happening to her in a strange place.  She uses all of her energy trying to go to school each day and has nothing left once she gets home.  She can't make plans with her friends because she never knows how she will feel that day.  This is hard for a fifteen-year-old to deal with.     
    



  

Invisible Disease

     It is amazing how much of our identity comes from what we accomplish and what we "do," not who we "are."  The first thing people ask when we meet is, "What do you do?"  The perception is that our job is who we are.  This is very frustrating for people who are out of work or on disability.  It makes us feel like our identity has been lost.  We are no longer doers, even though we still have value as people.
     Fibromyalgia and chronic fatigue are invisible diseases.  You can't tell from looking at us that we are sick.  When we look fine, people tend to think we must be fine, even when we are not.  This leads to the idea that we are lazy, even though many studies show that our drive to perform and "do" may have contributed to our disease.  Some people, including doctors, look at our healthy appearance and call us liars.  I would not have spent thousands of dollars searching for an end to this pain if I was a liar.  I wouldn't have contemplated suicide as a way to stop the agony because I wanted you to believe I was telling the truth.
     Many of us are forced to drop out of school or go on disability because of the pain and fatigue.  This is heartbreaking because we feel like failures.  We are no longer doers, so we are nothing in your eyes.  We have failed you and ourselves.  We mourn the loss of our identity.  Strong emotions cause physical pain for us and this makes life even more unbearable for us and for you.  Statistically, 75% of people with chronic illnesses get divorced.  We also have a higher rate of suicide.  Why would we lie to get this kind of attention? 
     Many, like me, are able to work long hours at their jobs.  However, that is all we are able to do.  As the week progresses, I find myself getting weaker and the brain fog closing in.  By Thursday and Friday, I am lost in a fog of pain and fatigue.  It feels like I am asleep and have no idea what is going on around me.  I crash every weekend.  I crawl up in bed and sleep for hours on end.  I wake long enough to eat or do the few things I have to do and then crawl back in bed.  This is the only way I can manage to keep working each week.  I have to give up everything I enjoy, including socializing with family and friends because I don't know if that will be what makes me crash for three days.  I may not look sick, but this isn't the way I would choose to spend my life.
     Invisible diseases are no less real than visible ones and who we are is as important as what we do. 

I Feel

I drop out of school and I feel worthless.
I can’t remember my own address and I feel stupid.
I don’t want to leave my house and I feel imprisoned.
I’m too tired to do my hair and I feel ugly.
I hide in my dream world and I feel like a coward.
People tell me I’m not sick and I feel like a liar.
I can’t hold my pencil and I feel betrayed by my body.
I can’t walk up the stairs and I feel helpless.
I work so hard and I still feel lazy.
I wonder if things will get better and I feel afraid.

Common Enemy

Everybody knows somebody,

and somebody’s always got advice:

foods to eat,

drugs to take,

lifestyle changes we need to make.

Well, I’m doing all I should be,

I’m doing everything right,

so where’s that

m
i
r
a
c
l
e

ǝ
ɹ
n
ɔ

you promised me?

Pretty soon frustration takes over

and I

walk away;

it’s easier to medicate myself anyway.

So I do, and then there’s poetry

and chocolate and sunsets and sleeping in,

blaring music through the headphones

loud enough to make me forget

everything for a little while.

I hide back here behind my coping skills

and mild rebellion,

watching as my friends fall apart

in the same way I am,

watching as we all

turn

away

in different directions

from our only common enemy.

Pepsi and Trazodone

I survive on Pepsi and Trazodone,

and perseverance that tells me I can do anything

even when my body says I can’t.

I have legs that can still walk, and

hands that have both learned to write

because failure isn’t an option.

And we don’t complain –

we’ll never complain.

So I just put on a sweater to hide the fact

that I’m still freezing in August,

and a hat to hide the hair

that falls out sometimes on those days

when I forget to breathe.

Empathy Pain

     Mandy and I have been empathetic all of our lives.  As a baby, Mandy would be sleeping until a commercial came on with a crying baby.  She would wake up and cry her "pain" cry.  When the commercial ended, she would stop crying and fall back to sleep.  She never outgrew her empathetic connections.
    
     We feel the same connections for fictional characters.  When a character in a movie can't breathe, I have an asthma attack and have to leave the room.  When someone is hit in the head, I get a migraine.  A heartbreak?  Chest pain.    I have anxiety attacks when I leave book characters "stuck" in a suspenseful scene by closing the book.  I have to keep reading until they get to a "safe" spot to rest.  Mandy can't read suspenseful books because she suffers along with the characters.

     We feel pain for people we love, even when they aren't with us.  My sister-in-law needs surgery for enlarged cysts.  All week I have had random moments doubled over in pain in the same area.  When I check up on her, she says her pain was bad that day.  Mandy felt horrible all week and couldn't figure out why.  She found out her cousin had been vey sick with the same symptoms.  Once the antibiotics started working for her cousin, Mandy's pain went away.

     We feel each other's pain constantly even when we aren't aware of it.  Later when we see each other and talk about our days, one of us will mention a pain and the other will have had that same pain.  I will mention that I had a strange pain in my neck and shoulder and she will laugh and say she pulled a muscle playing on the trampoline.  She will mention a pain in her back and say, "I don't know why it hurts.  I didn't fall or anything."  I will say, "No, but I fell at work today."  It has become so common we joke about it.  "Mandy, I have a pain in my jaw.  Do you know why?"

     We always thought we were unique that way and shared a quirky ability.  Tonight some of my fibro friends were talking about having the same abilities.  We were all shocked that the others had the same experiences.  However, my non-Fibro friends give me strange looks when I try to explain it to them. 

     I have no idea what this means and can't find any research on it.  It may be another strange symptom that Fibromites have and doctors will say it has nothing to do with Fibromyalgia.  It may lead to new understandings about the disease.  It may be Karma.  For now, I am sending out love and healing thoughts to the universe knowing that I will share them with you.    
    

It IS all in our heads!

     We have been called hypochondriacs, overly sensitive, in need of a hobby, and attention seekers. "The pain is in your head." Little did they know how right they were.

     In the August issue of Arthritis & Rheumatism there is a study showing people with Fibromyalgia have more connections in parts of the brain that feel pain. The study used a MRI to see the brains of 36 women. 18 had Fibromyalgia and 18 did not.  Click the title of this post to see more information on the study.

     It will take time and more studies to truly understand the extent these connections have on Fibromyalgia. It may lead to a cure, a new way of treating the disease, or a way to diagnose it. For now the reseach shows it IS all in our heads and we can live with that.

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?

• 
  
  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."
• 
  
  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.
• 
  
  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?

• 
  
  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. 
• 
  
  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.
• 
  
  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. 
• 
  
  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

• 
  
  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?" 
• 
  
  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.