What is Fibromyalgia: My Research and Pro Tips for Living Your Best Life

The statement above is one that helps me get through my worst days.

In my facebook group, Fibromyalgia can be funny I have had a lot of questions lately from ladies who have just recently begun the process of living with this life-changing disease.  I know what that feels like.  It is nearly impossible to imagine a lifetime of pain, not sleeping, losing the ability to do the things you love, being sad because you can't go skating, or to car shows with your kids, feeling stupid because your brain stops working correctly, walking circles around your house because you forgot what you got up for in the first place.

It is terrifying to me when I can't remember something.  I am at the mercy of my loved ones to tell me if I have seen a certain movie, or read a certain book, or watched a show; the process of our brains is moving so fast that before you can get it out, you forget what you were saying, even if I have started to say something, if it is too long, I forget what I was saying halfway through.  Most people don't understand.  I have been working on not explaining every single time I seem stupid, or high, or whatever.  I struggle still with explanations to a store clerk or someone I am talking to on the phone.  Texting is your friend.  Writing is your friend.  I can type fast enough to keep up with my brain (most of the time) which is a relief because I am able to help others with the words that I can write.  I also find the more I write, the better my brain behaves when I am talking to people.  Don't be afraid to tell people you have a nervous condition and you have a hard time speaking.  Especially on the phone.  I can generally do all right in life.  It is when I have to call the Dr, or the Pharmacy, or customer service to extend payment times on the bills...  just say I have a nervous condition and it makes speaking difficult.

I like this picture because this is what it feels like sometimes.

Now, I just wrote a paper on insomnia and fibromyalgia, I am going to share with you what I found out.  Tests are being done in other countries.  I am going to simply copy and paste the pertinent parts.

.  "Insomnia can lead to severe impairments in cognitive functioning and quality of life."

"There are no concrete answers as to why we sleep, however, one theory is that is repairs physiological damage and maintains a person’s body, as well as keeping the mind in good working order (Lefrancious, 2011).   REM sleep is important because it is the time that you consolidate memories and rest your neural systems.  Circadian rhythms are your body’s biological rhythms and sleep affects the circadian rhythm as well."

What this is saying is that REM sleep is the most important phase of sleep, without it our bodies do not repair themselves.  Fibromyalgia blocks us from getting to REM sleep.

"There have been several studies in other countries on fibromyalgia and what happens to your sleep cycle.  Marter and  Agruss did a study on the brains of women who suffer from fibromyalgia and sleep deprivation (Marter & Agruss, 2008).  They discovered abnormal cortisol levels.  This might lead to the increase in production of somatostatin, which is a neurohormone that is secreted from the hypothalamus in the brain and it inhibits the secretion of other hormones (Somostatin, 2011).  Since the Fibromyalgia patients have three times the normal level of substance P, which is a neurotransmitter in pain pathways (Collins)."

Imagine your neurotransmitters as being like electricity in power lines.  These are what carry the messages through the body and to the brain.  Fibromyalgia feels like someone unplugged all your shit and plugged it back in the wrong slot.  Example, unexplainable, excruciating pain because our wires are all plugged in wrong.  

Also, as stated above from my paper, we have a super amount of a thing called substance P.  Now, going back to the electricity example, substace P is part of the electric current, it helps carry the power to where it needs to go..  It also helps regulate how much electricity (neurotransmitters)  is in the body.  We have a lot of this, up to three times as much as we are supposed to have which means our bodies essentially need a surge protector.  Instead of surges though, ours is pretty constantly zooming through our nerves, unchecked by the system that is supposed to control it.   Like a nuclear meltdown all the time.  Vibrating is what it feels like for me.  My eyeballs even vibrate sometimes, it's terrible.

It has been found that fibromyalgia patients display shorter sleep times, inefective sleep, they wake often, they have fewer hours of REM sleep, they have shorter NREM sleep at stages three and four compared with healthy control subjects (Sanchez, Diaz-Piedra, Miro, Galvez, & Buela-Casal, 2012).  They have found that the alpha pattern disrupts the sleeping brain of a fibromyalgia patient.  This is directly relational to unrestful sleep and pain in the morning (Sanchez, Diaz-Piedra, Miro, Galvez, & Buela-Casal, 2012).  

Now, it is just now coming to light that fibro is not cause by depression, and so far most doctors are still under the assumption that you are depressed.  I always feel like my body is telling me to flee flee.  I certainly know that my adrenaline is broken.  I also know that I am NOT depressed and fibro has nothing to do with depression.  Except you might get depressed because you feel like absolute shit all the time.  Try not to let that win.  Small things can make your day better.  Getting out of bed and wearing a bra.  Getting dressed.  Taking a shower or a bath.  You can easily figure out new things that you are capable of. 

 I will forever miss the things I can no longer do, that pain will never go away either.  All we can do is keep a positive attitude and face this shit down like a fucking warrior.  I was a Marine.  I was already a warrior and trust me on this I am harder now than I was when I graduated Marine Boot Camp, that is no lie.  This is a fucking battle, and we have to gear up and muscle through.

I am having an adrenaline rush all the time.  Part of starting to heal is recognizing that this is your reality and you sort of have to start back at zero and figure out how to live with this disease.  That is essentially what this entire blog is about, finding myself in the midst of this hell and living the best life I can.  Granted, it's a new one and I cry and I get pissed off and I wasted a lot of energy to figure out that the best Doctors don't know what this is, you did nothing to cause this.  No one knows yet.  Try not to spend too much time in the "what did I do to deserve this for the rest of my life" phase.   Firstly because you did nothing.  You don't deserve this.  None of us do.  Use that time instead to start to learn your new limits.  Baby steps.  For example, I have a rule that I don't touch cold things without gloves because there is something with my hands and feet that set me off.

Don't go where there are flashing lights, or loud noises.  However, if you love fireworks, wear headphones and listen to music.

I will end this here because I have homework.  Check out my fibro page.  I think laughter is one of the best medicines that are left to us.  Hang tight and always remember that you are not alone.

Medication:  I am on a very low dose of Prozac.  Because like I said, this is not depression.  Most of the popular meds that patients are taking treat depression.  Then they don't work and you feel defeated.  American docs are not all caught up like I am.  This is what I am going to school for.  My life goal is to help people with fibro find their happy place.
I medicate for pain with cannabis, it also helps me think.  I do not live in a medicinal state yet, but I am fighting for the laws to be changed.  Breaking the law is fine by me because it is keeping me off of the opiate pain medications like vicodin or percoset.  They are all opiates and opiates are heroin.  I smoke an herb that CANNOT kill me.  It helps me.   
Any questions you can find me on my facebook page.