FMS is not a form of arthritis.  It was commonly believed that FMS loosely fit the definitions of arthritis, namely that its many problems stemmed from an inflammation of the joints. 

FMS does not affect the joints, muscles or connective tissues (the myofascia), although it definitely feels like it does!  No matter what it feels like, there is no damage to those parts of the body.

FMS is not an autoimmune disease.  There was a belief that FMS stemmed from an overactive immune system.  An autoimmune disease means that the body’s immune system begins attacking its own cells.  That is not the case in Fibromyalgia.

Fibromyalgia Syndrome affects children, men and women of all ages.  It used to be believed that it pretty well affected only middle-aged or older women, with few exceptions. 

And finally, FMS is most definitely NOT a psychological problem.  It is very, very real.  There are many doctors who still do not accept this as a real problem and will tell patients it’s all in their heads.  Counseling and/or drug therapy for depression or psychosis will not make the symptoms disappear.

Now, what is Fibromyalgia Syndrome?  Why is it so hard to diagnose?  Well, let’s start with the second question first. 

FMS is hard to diagnose because the symptoms appear to be random, hard to pinpoint and mimic so many other things – like multiple forms of arthritis, MS, Chronic Fatigue Syndrome and a few others.  Most of the symptoms are not consistent and there are many other co-existing problems with FMS that make it hard to distinguish in itself.

Diagnosis comes when patients are informed about their own symptoms, do their research and are proactive in their care.  It comes when doctors, or other health care workers involved in the patient’s care, know about FMS.  It comes when doctors and others are willing to look outside the box.  Sometimes though doctors already know what’s wrong and decide not to tell their patients because, “there’s nothing you can do about it anyway.”

That’s where they’re wrong.

Diagnosing FMS involves three things; one, ruling out other things, two, taking into account the patient’s history and, three, testing for tender points.

Tender points are eighteen spots on the body, in all four quadrants, that cause significant pain when pressed, but do not cause pain elsewhere.  (Pressure must be hard enough to whiten the thumbnail.)  There must be eleven tender points present for a positive diagnosis of Fibromyalgia Syndrome to be made.

Most often, your general practitioner, or family doctor, depending on where you live, will send you to a rheumatologist if he thinks you have FMS.  The rheumy will rule out other things and either confirm or deny the GP’s suspicions.  Once the diagnosis is made, they will most likely begin to find a daily care routine. 

So, I still haven’t answered the question “what is FMS?”  We have gone all around it, talked about what it isn’t and how to diagnose it.  Now let’s talk about what it is.

First and foremost, Fibromyalgia is a neurological disorder.  Recent studies have shown that patients with FMS consistently have several biological abnormalities.  These abnormalities are centered on our brains and several hormone deficiencies.

They include:

•   decreased blood flow to several areas of the brain that may explain the pain sensitivity and cognitive problems.  In particular, the thalamus region.   The thalamus is the part of our brain that translates signals and relays them to the appropriate parts of our bodies and brains.  It controls most of our senses like taste; hearing; touch – pressure, temperature and even the movement and placement of our muscles, joints and facial expressions and our visual systems.  It also controls our gastrointestinal tract and other internal organs.  It also regulates sleep and wakefulness. 
•   High levels of something called “substance P,” which is a nervous system neurotransmitter involved in pain processing.  Substance P is what they call a neuropeptide, a short acting neurotransmitter.  It regulates moods, anxiety, the creation of new neurons, the strength of our responses, respiratory rhythm, nausea (and whether or not we vomit), the creation of new nerve cells and pain.  A dysfunction of this neuropeptide throws all of that stuff out of whack.
•   Low levels of the nerve growth factor.  This factor is vital for the survival and maintenance of sympathetic and sensory neurons.  Sensory neurons translate external stimuli, telling us what we should feel.  It is part of what makes Fibromites (people with FMS) so sensitive to pain and temperature, makes us over react to it.
•   Low levels of the hormone that promotes bone and muscle growth, Somatomedin C.  Somatomedin C is a growth hormone made by the pituitary gland.  It’s released at various times in the day, but usually in deep sleep.  The decrease in this hormone can cause decreased bone density, fatigue and reduced exercise tolerance.  It can also cause adverse lipid changes, which may leave us at high risk for cholesterol related problems.
•   FMS also leaves us with low levels of serotonin, norepinephrine, dopamine and cortisol. These are neurochemicals that, collectively, aid in translating everything our bodies do and feel.  They are the conductors of the electrical signals from our nerves to our brains.  Each chemical has its own function, to get into them would take up a lot of time.
•   Also creating problems are low levels of phosphocreatine and adenosine.  These are muscle-cell chemicals that regulate the amount of calcium in the muscle.  They ‘push back’ the calcium created with a muscle contraction and allow it to relax.  If the calcium is not pushed back it remains in a contracted state – in other words, a muscle spasm.

These are all the major myths about FMS, debunked.  It is not all in your head, there are viable, viewable symptoms and changes caused by Fibromyalgia.  FMS is painful and debilitating.  It is accompanied by stress, depression and a loss of self-worth.  FMS is confusing, heartbreaking and exhausting.

It is inexplicable and frustrating.  It is an unknown few people believe exists. 

It is for life.

My name is Jennifer and I am a Fibromite.  I was diagnosed at the beginning of my twenties, soon after my son was born.  I have lived with chronic pain since I was a child.  I am the mother of two children, divorced and in a new relationship.  Fibromyalgia was the underlying cause of my divorce.  The new relationship is strained at times because of the FMS.
I have lost the ability to do many things over the last decade and have had to learn to live with the feeling that my children are being neglected by me. 

My ability to think and comprehend things has gone to the toilet.  The only way I can think logically now is to write it down.  I have a form of OCD (Obsessive Compulsive Disorder) that requires me to have routines that I follow almost to the minute on a daily basis.  I freak out if my routines are broken.  By ‘freak out’ I mean I get angry, stressed out and generally fall into a funk until my routines are restored.

I have two other chronic pain disorders and a host of co-existing conditions along with the FMS.  I am unable to work outside the home, indeed there are days I am unable to leave my home.  

I sometimes require help with housework, with getting dressed or undressed, even with personal hygiene.  I cannot always wash my hair by myself.  If I can get it washed, some days I cannot get it brushed. 

I take pills to help me sleep, pills to help me function and yet, I do not take as many pills as some people with FMS.  One of the meds I take is for Parkinson’s disease because it’s the only thing that helps that symptom group.

And yet, I’m a fairly positive person.  I write, and I write very well.  I have a large fan base, despite only having one book published.  I am well loved by my friends and most of my family.  Those in my family who refuse to have anything to do with me do so for the simple reason that they do not understand FMS and all its complications.

I like to help people, indeed it’s almost a compulsion.  That’s why I wrote my first book, Living Full and Gluten Free: A restaurant guide with a full menu.  I wrote it for my mother, who has Celiac Disease, and for my little brother, who also has Celiac Disease.  He was diagnosed at the age of nine.  I wanted them to be able to find safe foods when they are not at home, for everyone deserves a meal out once in a while.

And I am writing this book because despite all the books out there that talk about FMS, there is not one book that I can find that tells it from the patient’s – no, the Survivor’s point of view.

This book is to help you know that you are not alone.  That you can feel what you feel and not be ashamed of it; that feeling that you’re being selfish and lazy because your spouse, who has worked all day, has to come home and do the dishes you couldn’t do; that guilt that you cannot carry your fifteen month old baby because at twenty pounds she is too heavy or that frustration with people who say “But you look perfectly fine!” when you have to cancel dinner yet again because your pain levels are too high and you know you just can’t do it are all perfectly normal and acceptable.  

All of those feelings are part of being in this FMily we’re going to talk about them.  We’ll talk about guilt and grief and denial and acceptance.

This is the story of my life as a Fibromite and the stories of others in the FMily.  FMily is the group of people who have Fibromyalgia, the only group of people who truly understand what you’re going through.  They are the ones you can turn to with your questions, the ones whose shoulders you can cry on and the ones who will get it when you say “Man the fibrofog is thick today!  I can’t see a thing!”

I hope you find the book eases your mind.  I hope you encourage your family to read it and that it helps them cope too.  Here’s to days full of joy and less pain.

That's the intro to the book.   Does a pretty good job of explaining FMS if I do say so myself.  Now for the definitions:

Ok, this post is way long, my apologies but there's all the info I promised.   Now on to the Daily Thoughts.