Fibromyalgia 101. Must Read if you Have Fibro

I laid in my bed for two years and tried to stop my heart so that I wouldn't hurt anymore.  I could have used some of this information.  Please, don't give up and share with your friends.                

A lot of women on the boards that I see, who are newly diagnosed with fibro, or they have a terrible doctor, and they have so many questions about Fibro.  It took four years for me to get diagnosed.  The popular theory still used by doctors is that it is caused by depression.  That is total bullshit.  Our serotonin is affected, as you will see in later information; but they are prescribing Cymbalta and Lyrica like they are a cure all and they are treating a condition you do not even have.  I am compelled to tell you the truth.  I take a low dose of Prozac, just because fibro jacks your brain, and the way it works; that is the reason I take Prozac, my brain is twisted.  All the chemicals and neurotransmitters in our brains are broken, it is a condition with multiple things that count against us.  Read on, I have proof.  This is a nervous condition.  Fibromyalgia is a neurological disorder, not caused by depression.

                I want to add at this point that in one of the studies I was reading there was a wonderful quote from a warrior, her name is Mrs. P.  She says, “Most people do not understand fibromyalgia.  They don’t really get it; they see you, they look at you, and you look fine.  So they do not understand.  The fibromyalgia pain feels like a deep muscle strain or pain.  For me, it has been mostly a dull deep pain and ache throughout my body.  I never know what my day is going to be like.  I have to wake up in the morning and see what hurts and how I can medicate it and how I can function for the day.  During the day, I feel I have an expiration date on me.  It’s like I have a weight around my neck, back, or waist and I start to go down after a while.  I can still feel okay mentally but my body just quits on me and I have to lay down.” (Clauw, 2014)

                I almost fell out of my chair when I read that.  She is me and I am her.  She explains it quite well.  I have learned a lot today, with a few hours to read some recent research I learned quite a bit.

                First of all, I know that we wonder why women are more affected by FMS.  I learned today that it is because we have many more tender points than men do (Clauw, 2014).  I learned that even though we see things like yoga or cognitive exercises (like puzzle games), and behavioral therapy and think that there is no way that will help...  I am here to tell you that it does.  I did physical therapy, and for me, I was simply sad that I don’t have access to a pool because exercise in a pool is so good for you and it doesn’t hurt at all.  But I do puzzles on my phone and brain exercises, I get physical exercise when I walk around.  I don't wonder why I am gaining weight.

                I will say here what it is that I take for fibro.  First of all for pain I take cannabis.  Look below for links to figure out which strains are best, and stop smoking that shitty stuff, it won’t help and it has pesticides.  I take Xanax, gabapentin, a beta blocker, Prozac.  I think that is all. 

Click this picture to go to my facebook page.  Lighthearted side of fibromyalgia.

Click here for cannabis site
Click here for another one
Click here for an interesting article on how effective cannabis is for fibro

                You may be asking why your Doctor doesn’t know some of this stuff.  That is because most of these studies are done in other countries because Cymbalta and Lyrica want to make their money.  Think I’m lying?  Keep reading.

                Insomnia..  Let’s talk about that first.  Everyone with fibro suffers from Insomnia.  I have wondered why it is easier for us to sleep during the day.  First, “insomnia, can lead to severe impairments in cognitive functioning and quality of life.” (Birdwell, 2014).

                When we sleep there are four stages, during stage 4 a healthy person will repair physiological (characteristic of or appropriate to an organism's healthy or normal functioning <the sodium level was physiological>) damage and maintain their body, this is also the time that you consolidate memories and REST your neural systems.  ß- see there, rest your neural systems, even when we do that half sleep thing that we do our neurological systems are not repairing themselves like they are supposed to, leading to falling down and severe weakness, sometimes it feels like there is extra gravity (Birdwell, 2014).

          It has been found that fibromyalgia patients display shorter sleep times, ineffective sleep, they wake often, they have fewer hours of REM sleep, they have shorter NREM (stages 3 and 4 of sleep).  Which means our bodies are NOT repairing themselves like they are supposed to.

          Circadian rhythms are all the biological processes of the body.  For example I am working on changing my eating circadian rhythm.  Currently I only get hungry at night, no matter how early I wake up.  Oh, side note..  I drink coffee.  I know we technically aren’t supposed to but we aren’t supposed to take naps either..  I had to pick one.  I bring this up because when you are searching for ways to feel better, it can seem overwhelming and a bit over the top.  I do what I can and I am doing alright.

I digress….

What Causes Fibro?

Here is where it gets confusing for a few minutes, but I promise to keep it simple.  Don’t get butthurt if I give the definition for a word and you already know it.  I want everyone to finish this piece knowing a little more about what is happening to their bodies.

          Let me start by quoting one of the studies that I read.  It says that “fibro pain is the body’s cry for energy” (Bowden, 2014).  That resonated with me in a big way. 

          “Etiology and Pathogenesis” ( Etiology - the cause of a disease or abnormal condition) (Pathogenesis - the origination and development of a disease).. So the cause and origins of fibromyalgia.  “Several factors such as dysfunction of the central and automatic nervous systems, neurotransmitters, hormones, immune system, external stressors, psychiatric aspects” (Bellato, Marini, Barbasetti, Mattei, Bonasia, & Bionna, 2012).

          “Another mechanism supposedly involves descending inhibitory pain pathways, which modulate spinal cord responses to painful stimuli.  They seem to be impaired in patients with fibro, helping to exacerbate the central sensitization” (Bellato, Marini, Barbasetti, Mattei, Bonasia, & Bionna, 2012)

What this is saying is that there are pain pathways, the ones that transmit the messages to your brain when you touch the stove, those..  they are broken if you have fibro which essentially means this is yet another way in which our nervous systems are jacking us up.

          Then there is this, “Apart of segmented neuronal mechanisms, glial cell activation also appears to play an important role in the pathogenesis of fibromyalgia because they help to modulate pain transmission in the spinal cord.  Activated by various painful stimuli, they release proinflammatory cytokines, nitric oxide, prostaglandins, and reactive oxygen species that stimulate and prolong spinal cord hyperexitability..

(Neuronal mechanisms are just how the neurons are working in our brains..  Overworking)

Essentially, what that comes down to is this..  there is a whole other system working to make us hurt.  Another system in our brains and our backs..  another system that effects the levels of neurotransmitters in our bodies, another issue that makes you feel like your skin is throwing a tantrum.

I found this very interesting, because I am strictly cannabis for my pain, but have tried other pain relievers.  I was a heroin addict for a few months in another lifetime.  I don’t want to go back there.  I smoke an herb that won’t hurt me at all instead. 

Today I found out why opiates don’t help.  Because the above explanation there are peptides (any of various amides that are derived from two or more amino acids by combination of the amino group of one acid with the carboxyl group of another and are usually obtained by partial hydrolysis of proteins) that are in your bodies own opioid system.  They are, of course, hyperactive and they block the opiate medication from helping at all.

I live in PA and our medical marijuana bill just passed senate, they cut a lot of things from it, but they left fibromyalgia, as one of ten disorders, because they know that nothing else really helps.

Now, the real shit.  I will walk you through my day.  I wake up and have coffee and a smoke on the back porch while my dog has a wee.  I have come back in the house and totally forgotten about the dog… I felt awful.

I forgot that my son was bringing friends on the bus and I didn’t make the house 420 friendly (a bong was out).  My son was very angry with me.

Family.  Forget the extended ones.  Unless they know someone else, they will simply make you feel like you are a shitty lazy shit that doesn’t want to work.  We don’t need that shit, because we know better.  To Hear that it is all in my head I respond and I tell them about Substance P.

Excerpt from earlier blog

"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….  END

I suppose that yes..  it is in my head..  my brain to be more exact. 

Stop taking things you don’t need.  We can fight this thing together, we just need more people to listen.  I just want to help.  Knowing these things help me understand why I feel the way I do.

We are going to keep doing insane things.  We are going to keep forgetting.  I had to give my husband my xanax because I would forget I took one and I would take another running out early every month.  I have worked for a long time taking baby steps and failing and falling a lot.  I am going to write a book on how I got to this place.  I hurt, nothing has changed except my attitude.  Stay strong warriors and contact me if you have any questions.

This is in no way a solicitation.  I don't do that.  Shit, I don't even get disability from the state, even though my symptoms are severe and I would qualify.  I do this because it helps.  I do this because it helps me to help others.  I am in school for sociology and psychology.  I am learning so much and more about everything, researching fibro every chance I get.

If you want to remove my blog link from your page because you think I am somehow soliciting, just do it, because you don't deserve my help.  I could be doing other things.  Selfish with the things that I learn, but it isn't in me to be like that.  I am not selfish and I hate money.  I have nothing of worth except my information about this condition that has millions of people feeling alone and totally defeated. 

This is my path.  This is my purpose..  let's find yours; I promise that you have one.

Bellato, E., Marini, E., Barbasetti, N., Mattei, L., Bonasia, D., & Bionna, D. (2012). Fibromyalgia syndrome: Etiology, Pathogenesis, Diagnosis, and treatment. Pain Research and Treatment, 1 - 17.

Birdwell, T. (2014). Fibromyalgia and the effects on the brain.

Bowden, J. (2014). Hope and healing for fibromyalgia: the latest research and promising therapies for this misunderstood and often baffling disease. Better Nutrition.

Clauw, D. (2014). Fibromyalgia: a clinical review. JAMA, 1547 - 1555.