Throughout the last couple of years I have come across many who  have challenged my diagnosis, said the Doctors were mistaken, and on the rare  occasion I mimicked the symptoms, all because I found a path for me that works  and allows me to the present time to live a pain free life.

Many are misdiagnosed with Fibro for various reasons, many use  self diagnosis to say they are living with Fibromyalgia (at no time should a  diagnosis of any syndrome or disease be done, only a diagnosis by a Medical Professional should be used).   Allow me to first explain my diagnosis (I would not normally do this, but  I do not want the emails asking who diagnosed me or how I was diagnosed).  I was diagnosed in 2006, after a year  of symptoms, by two separate Doctors, a Rheumatologist and a few months later a
Pain Specialist.  In 2009 I was then diagnosed again by a Psychiatrist who is also a Pain Specialist.  These three diagnosis’ were done in addition to my GPs.  
Now to the real reason why I am writing this blog entry.  When I was going through my  days of dealing with the daily pain (which would rival labour), I remember looking at my family, friends, and even Doctors and think you do not understand, how can you really support me?  You walk through your daily life without pain, not restricted, not in tears, not wishing for a single second to be able to breathe, move or think without pain.  You begin to resent, get angry, and at time entitled (for me at least). 
I turned to the online community, people who were experiencing what I was, people who could relate, and understand and hopefully even educate and help.  These people were wonderful, understanding, and provided me with information that was helpful.  In 2010 when I started to find my way to a pain free life (for now), the more frequent my status said “Good Days” fewer people would respond to me, even
when asked how they were.   I remember I changed my status to “Pain Free” the very first time and I was so  happy. When I saw messages in my inbox, I had thought they would be “are you joking, really you are pain free”,  “how”, “congrats”, instead I was greeted by“you should go back to the Dr. you
never had Fibro in the first place”.  Huh?  I was very confused. 

I went through more than anyone should go through (and yet I am not the worse sufferer out there), I went to places that I thought I would never see, I wasted (so I thought at the time) years of my life living
in pain, I gave up dreams, passed on experiences, pushed away friends and relationships, because of Fibro.  This was all negated because I no longer experienced this, I no longer sat in the house restricted by Fibro.  Why?  Is this any different than a child in school only playing with another child because he has the newest and latest game, and when it breaks or something newer comes out you stop playing with him? 

Every person diagnosed with Fibromyalgia experiences it in their own unique way, which in turn means that the way the individual chooses to manage it, treat it, and even quiet it is just as unique as their experience with Fibro.  When a success is found with Fibro (no success is small, all are great and powerful) it is to be celebrated by the community, shared (especially in the Medical world), and supported (whether it will or will not work for you). Any success whether it is or is not personal is still a success for the fight against Fibromyalgia.

Just because you do not see it or experience it does not mean it is not possible, or make that persons journey any less powerful, important or true.  

I woke up today, and throughout the day I have had the feeling that I should write about the darkness I felt, went through and had to come out of when the Fibromyalgia I experienced was at its highest point.

When speaking to Dr.s, Therapists, friends, family, strangers they make it sound so simple, and so easy to climb out of the hole you are in.  Few questions are asked, few people want to understand, but all seem to have an opinion, and we, or sorry, I will say I, since I am speaking of my experience, I felt that no matter if someone did or did not want to ask you were not to tell the whole truth as they did not want to hear it, or I did not feel they would understand or could handle it. 

No matter whether it was when I was in my worst flare up, or even now when the Fibro remains dormant, I do not feel that anyone truly wants to hear what I experienced, what I went through and what I battled.  The lonliness you feel during it for these reasons and others, and even the traces of being utterly alone in the battle when I remember back brings me to want to share more. 

I don't remember the date, I don't remember why it was that day, I do remember looking at that bottle and thinking how many would it take?  I had been in pain for years, hidden tears, shared tears, anger, frustration, feeling weak and defeated, the pain, the hope almost gone that anything would help, grasping for anything.  Doctors saying you will be in a wheelchair before you are 30, you need to accept your new way of life, unable to hug my kids because it hurt too much, shutting myself away from friends and family, I could go on.  The hole I was in, the pain I was in was getting deeper and deeper, I could no longer see the light at the top.

Then it happened the flare up to rival all previous flare ups.  Clothes hurt, laying on the bed brought me to tears, closing my eyes was too painful, opening my eyes was too painful, the migraine that made it feel your eyes were about to burst out of your head, unable to drink or eat, the nausea and wanting to be sick but knowing that it would bring you to what you think at the time is the verge of death, your body is on fire but you are experiencing chills and the sheet, yes a sheet is too heavy for you.  Feeling horrible because you are still able to think and you feel the guilt of your children seeing this, the thinking why me, what did I do in this lifetime or a past life to make this punishment acceptable.  People around offering me food, help, and just asking what they can do, I yell for them to be quiet because their voice made my migraine worse, and then being angry because no one had checked on me.  Curled in a fetile position, rocking myself and wanting to cry but cant because you are so dehydrated from not drinking.  I can go on and on.  Then the kicker, the pain will go away with sleep, but you can't sleep because the pain is too great.  So what is the relief.

I looked up, and saw the cupboard.  The cupboard of all the prescriptions the Dr.s had offered, provided me for possible relief.  The morphine, the codeine, the fentanyl (sorry if spelling is off), the four different types of sleeping pills that have never held up their end of the bargain.  Why not? 

Even now as I am writing this tears come to my eyes, I remember and my body, heart, soul, and mind, sympathizes and understands what I went through, and yet I am thankful for that day. 

Why not?  The pain I was in, even without the flare ups was increasing on a daily basis.  The life I was living was one of surviving and not living, enjoying, learning (so I thought at the time), having or reaching for my dreams.  Why not?  I had the medications, I had enough to put five 500 pound men to sleep.  Take the pills and I would fall to sleep and never feel pain again.  I walked to the cupboard, I know it sounds weird but walking to the cupboard the pain was gone.  I did not have a problem, did not feel any pain walking to the cupboard, opening it and lining up 7 bottles of pain medications, opened the bottles (which normally near impossible for me on a normal day, not a problem at this time).  I poured myself a cup of water, placed it beside the bottles and stood there.  I do not know how long I stared.  I do not know how long I thought about it.  I do remember closing my bottles, I do remember with each bottle that I closed and with each bottle I put back, the pain came back.  The last bottle put away, the full force of Fibro was on me.  I drank the glass of water, got sick to my stomach in the sink, fell to the floor cried, and crawled to my bed, returned to my fetile position and cried.

What stopped me?  I did not know who would find me, and I know for a fact that more than anything I did not want my children to find me or have a mother (even though I felt like a failure as a mother), have a mother who gave up fighting and killed herself. 

I was there, I fully admit it, that if I had not had children (many people have their inspiration), I would have taken those pills and I would have gladly closed my eyes and fallen to sleep. 

I have been to the darkest places (this is only one time I have shared), I have given up hope, I have stopped fighting, and I have given myself to Fibromyalgia.  All those who experience the dark times, do not hide, do not sit quietly, share, fight and above all find your light.
Many individuals who are living with chronic pain, exhaustion, forgetfulness or another common symptom are often likely to suggest or lean towards Fibromyalgia as their diagnosis.  You are able to visit any message board, or online support groups for Fibromyalgia and you will find someone asking “I have these symptoms, do I have Fibro?”.  Only a Doctor is able to diagnosis Fibromyalgia within an individual.  

There are currently no diagnostic laboratory tests or a generally accepted, objective tests for Fibromyalgia.

How is Fibro diagnosed then?

Upon visiting your Doctor, explaining your symptoms, a series of tests will be, should be run.  Although this is not to confirm the diagnosis of Fibromyalgia within yourself, this is done to exclude other diagnoses, diseases or other health problems that could explain the symptoms you are experiencing.  
A few of the Conditions that can mimic Fibromyalgia are;  

Low thyroid hormone levels (hypothyroidism)

Vitamin D. insufficiency     

Parathyroid Disease (causing elevated bloody calcium level)       

Muscle Disease causing muscle pain (such as Polymyositis)

Bone Diseases causing bone pain (such as Paget Disease)

Elevated Blood Calcium (Hypercalcemia)

Infectious Diseases (Hepatitis, Epstein Barr Virus, Aids)

There is also;  

Lyme Disease     



Should the tests that are run by your Doctor(s) come back  negative, Fibromyalgia may be mentioned to you, and a referral to a  Rheumatologist (a medical Doctor who specializes in Arthritis and related  diseases), or a Pain Specialist.  These two Doctors will have worked with Fibromyalgia and related disease on a more intimate level than a GP (General Practitioner).  
You have already been through blood tests, x-rays, and in some cases CT scans and MRIs’, how are the Doctors now going to confirm their hunch that you are living with Fibromyalgia?

The diagnosis for Fibromyalgia is made purely on clinical  grounds, based on a Dr.’s history and physical examination. The Doctor (whether it is your GP or a specialist) will go over your history and may ask you a few questions.  From there the Doctors will use a set of criteria (most common is the American College of Rheumatology’s criteria).   The Doctors will be working with two set criterias to base their diagnosis off of.  Which are;  

        1.       History of widespread  pain (pain is considered to be widespread when it affects all four quadrants of  the body, that is, you must have pain in both right and left sides as well as  above and below the waist to be diagnosed with Fibromyalgia) lasting more than 3  months;  

        2.       The presence of tender  spots.  For a diagnosis a person  must have 11 or more of the 18 tender points.  One of these predesignated sites is  considered a true tender point only if a person feels pain upon the digital  palpation of an approximate of force 4 kilograms to the site.   A tender point has to be painful at palpation not just “tender”.  Pain may be present at other sites as well, but  the 18 standard possible sites on the body are the criteria used for  classification.

The criteria mentioned above was the 1990 Criteria for the  Classification of Fibromyalgia. Recently the criteria was extended.  The American College of Rheumatology had extended the criteria in 2010, after some studies (please feel free to email me and I will send you an article regarding the study).  The Criteria Needed For Fibromyalgia Diagnosis as set out by the American College of Rheumatology in 2010 is;

1.       Pain and symptoms over the past week, based on the total of number of painful areas out of the 18 parts of the body.  Plus level of severity of these symptoms;              
          i.      Fatigue                                                              
          ii.      Waking  Unrefreshed                                                             
          iii.      Cognitive (memory or  thought) problems  Plus number of other general physical symptoms.

2.       Symptoms lasting at least three months at a similar level.

3.       No other health problems that would explain the pain and other symptoms.

Whether the test is not performed correctly, or the individual performing the test is not aware of the guidelines, or another  reason Fibromyalgia is still often misdiagnosed.  Educate yourself, and keep yourself up to date on the latest guidelines for diagnosing Fibromyalgia. 

The following websites were uses in  attaining research for the above blog entry