My Brain is Asleep

     Sleep is a huge issue when you have Fibromyalgia or Chronic Fatigue Syndrome.  Not only is it hard to fall asleep, your brain never goes into Level 4 sleep - Deep Sleep.  This is the stage where your body heals itself from the minor traumas of the day both physically and mentally. Muscles grow and your body stays healthy by renewing itself.  It's what lets you wake up refreshed from a good night's sleep.  When you have Fibro and/or CFS, your brain dreams, but instead of moving into a deeper level of sleep, it resurfaces to a light sleep and you wake up.  Now repeat the process several times a night, day after day and you will understand why sleep is a huge issue for us.  It is so huge, it is one of the symptoms used to diagnose the diseases.  Many researchers believe suffering from sleep deprivation for so long even causes the diseases. 
     There is new research conducted on rats that found sleep deprivation caused parts of the rats' brains to act like they were asleep.  I feel like this every day with Brain Fog.  I say the wrong words, but don't know what I said.  I call people the wrong names, even though I know who they are.  If you ask me directions, I will not be able to tell you which way to turn because I can't figure out right and left.  I will look at you blankly while you are talking to me because I can't figure out what you are saying to me.  I hear the words, but my brain can't connect them with any meaning.  Don't bother asking me my phone number or address. The numbers will get jumbled in my head and I will inevitably give you the wrong ones in the wrong order. Forget calling me on the phone.  Without any visual cues, the Brain Fog gets overwhelming and panic attacks begin to set in.  It's enough to make me feel crazy and definitely enough for everyone else to think I am stupid.  I don't know if it's better to say, "Sorry, that part of my brain is currently asleep; try back later," or just attribute it to Brain Fog.  I do know that the analogy of having parts of my brain fall asleep makes sense to me and makes the Brain Fog seem less scary and overwhelming.  After all, my brain may be asleep for a few minutes or hours, but I always wake up again.  It isn't permanent.  What do you think?            

Hard Lesson

     Okay, so those of you that know me in real life know I am very stubborn and I don't like to be told what to do.  I learned the hard way this week that those characteristics don't serve me very well.  I read a chiropractor's theory Fibromyalgia is caused by problems in the neck and spine that limit the blood flow and disrupt the nerve endings.  This is why they struggle with balance, walking, and falling.
     To help assess his patients, he has them put their heads back and look towards the ceiling for 30 seconds.  After doing that, most of his patients have severe trouble.  They get severe headaches, pain, and flare ups. 
      Because of some physical trauma I suffered as a child, the vertebrates in my neck are backward.  After reading this article, I said to myself, "I don't think that's right.  I know my neck is messed up and I can look up for 30 seconds."  Then I looked up at the ceiling and counted to thirty.  It was hard for me, but I did it.  (If you don't have Fibro, the fact that it's hard to look up for 30 seconds sounds ridiculous, doesn't it?) 
     For the rest of the day I had pain in my neck that continued to get worse.  Then the migraine hit me.  I spent the last half of the day in bed.  It got so bad, I got sick.  I have never had a headache that made me get sick.  Since I got sick on my pain medicine, I spent the entire night in pain.  The pain moved to my jaw and teeth.  The next day I had pain in the back of my head, my neck, and down my legs. 
      It might have been a strange coincidence, but I think the next time a doctor says something like that, I won't try to prove him or her wrong.  I guess I get so used to fake claims and quick fixes that I have become rather jaded.
     Today I was reading some other research from the National Fibromyalgia Association and came across a name that sounded intriguing called Fibro Innovations.  After visiting the site, I realized this was the website of the doctor I read about last week, even though I hadn't been to this website before or known the name of the group the doctor was working with.
     After looking at the website and realizing this was the same doctor, I have a headache, my neck hurts and my teeth feel too big for my mouth.  Apparently my body has a long memory and doesn't like this doctor. 
     Interesting thoughts to ponder about being sick and the emotional ties attached to physical pain.   

This is the link to his site if you are interested in his theory or his treatment plan

http://www.fibroinnovations.org/index.htmlhttp://www.fibroinnovations.org/index.html

Are We Wimps?

     My doctor thinks I am a wimp.  I didn't used to bruise when the nurse took my pulse, and I didn't feel like screaming when she took my blood pressure.  It's true things that don't hurt other people make me feel excruciating pain, but I am anything but a wimp. 
     One of the major symptoms of Fibromyalgia is pain.  It is a strange pain that changes, moves, and has no connection to a cause that we can pinpoint. 
     We have a low pain threshold, so our nerves register benign sensations as pain.  Other people register the nurse taking their pulse as pressure.  My nerves register it as pain.  Other people register a sensation and are able to forget about it. When you put on your watch, you feel the sensation of weight against your skin, but you soon forget about it.  My nerves don't forget about it.  In fact, as the minutes go by, the sensation turns to pain.  The pain continues growing until I can't stand it anymore and rip it off my wrist in disgust.  Our nerves register heat, sound, light, pressure, and touch as pain.  It is a physical response our nerve endings send to our brains.  It is not an emotional response. 
     Although we have a low pain theshold and register so many things as pain, we have a high pain tolerance.  We are able to deal with pain that is unimaginable to most people.  On a good day my feet feel like they are on fire, I can barely walk, have a headache, my leg muscles are in spasms, and my eye keeps twitching.  You would never know it because I have learned to deal with the pain.  Although my body is registering everything as pain, I am able to work two jobs, raise a family, and do it all with a positve attitude and a smile.  The fact that people can look at me and say, "You don't look sick," shows what a high pain tolerance I have.     
     Maybe what my doctor meant to say is , "You're not a wimp.  Your nerve endings are a bit confused and think everything is painful.  They are the wimpy ones, not you."  That would make sense because sometimes he gets on my nerves. 

Exercise and Flare-ups

     My doctor is convinced if I lose weight and exercise, the Fibromyalgia and Chronic Fatigue will be cured.  I go between rage and hope he is right.  His comments embarrass me and make me feel like a failure.
      Eleven years ago I was fifty pounds lighter with two small children and enough energy to work full time and get my masters degree at night.  Soon after my son was born, I noticed my body wasn't recovering the way it had before.  I didn't have any energy for my baby or young daughter. Simple tasks like taking a shower or getting dressed left me crying on the floor.
     Then the pain started.  Things that were not painful before became excruciating.  Hugs from my baby made me feel like I had been tackled by a football player. The gentlest touch sent waves of pain through my body.  Even wearing clothes or having a sheet touch my skin at night was horrible.
     My doctor diagnosed me with depression.  I kept telling him I was depressed because I was sick, not sick because I was depressed.  He gave me anti-depressants and sent me home.  With the medicine, I gained thirty pounds in weeks.  I tried to exercise, but then I couldn't walk.  The steroid shots helped me walk again, but added twenty more pounds. 
     Most days, most people can't tell I am sick.  Huge amounts of medication keep me functioning, but my weight is still a big issue for my self-esteem.  I haven't had a flare up for months, so I forgot how horrible they are.  This week I convinced myself to start jogging.  I jogged four times and lost two pounds.  I also brought on the worst flare-up I have had in years.  My friend says, "If exercise cures your chronic fatigue, you never really had it in the first place."
     It is a hard balance to find.  Do I listen to people who have these illnesses, too, and know what I am talking about? Do I listen to doctors who think it is all in my head?  Do I exercise to get healthy and spend the rest of the day in bed or do I save my energy for the rest of my life?  I'm still trying to find that balance in my life.  Funny that finding balance is my resolution this year.  Luckily it's only January. 

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!