Why advocate and raise awareness?

It is the ONLY CHOICE Available.

The thought that one of my children could possibly be diagnosed with Fibromyalgia is terrifying. What if they are not able to take Fibromyalgia by the horns as I have? What if they have a different type that is more debilitating than mine (no tangible proof there are different subtypes, just a concept). What if they don't have the same access to care as I? What if they hide behind a wall of shame or silence because of the stigmas and false perceptions that come as part of this diagnosis?

It was Saturday morning and we were on our way to Bruckner Boulevard. Weekly shopping trips with my Mom were the norm when I lived in the Bronx. We were chitchatting as usual and I was focused on the weekly circular checking the sales. As I gazed up, I noticed that my mom had shifted from the left lane to oncoming traffic. I yelled "we are going the wrong way!" My mom immediately moved over to the right and on to the right direction of traffic. She then went on to explain that periodically her mind would "wander off" sort of like when you walk into the kitchen and can't remember what you went there for.  I urged her to speak to her doctor and feared that this was early signs of Dementia or Alzheimer's.  During this same time, my mom had been experiencing pain and recently had arthroscopic knee surgery. In fact she had surgery in both knees and today still suffers from pain and walks with a limp.

As I think back now, a lot of what she experienced back then and continues to experience, points to fibromyalgia. The pain in all 4 quadrants of her body, the fibro fog, the rosey cheeks when fatigued, sleeping marathons, the depression, sensitivity in her teeth during times of flares, the frustration when not being able to do all the things as preplanned.  Although she has never been diagnosed with Fibromyalgia or any other pain disorder, I am convinced that I inherited Fibromyalgia from my mom.

As a parent, one of many responsibilities is to protect my children from harm and danger. How then CAN I be silent when there is a chance that ALL or ANY of my children might inherit a syndrome that has destroyed futures and taken so many lives?  I refuse to be silent!  Our children and future generations deserve nonetheless.

Sharing is Caring!

"Ms. Ramos you have Fibromyalgia"

As I planned out my future, fibromyalgia was never part of the plan. I vividly remember spending hours sitting on the fire escape looking at the stars while planning out every single detail of my future. Many nights as I gazed into the sky, I would giggle because even I thought my dreams were big and would probably never come to fruition.

I returned to college as an adult student and graduated in 2006. One of the most proudest moments in my life was walking across that stage to accept my diploma and seeing my three children in the audience smiling, clapping and waving.   

The plan was to return after taking a semester off. I desperately needed a break. My body was tired from working a full time job, attending college full time and raising three young children.  My diploma got me a promotion at work and I began looking into making the dream of homeownership a reality. During that same time, I started waking up to burning pain in my torso, nausea, constant headaches, memory issues and severe back pain. I began visiting the doctor looking for answers and he began what is referred to as a "work up". I also began conducting my own research via the internet. As the pain intensified, my mornings become more difficult. I remember the day I explained to my Doctor that I felt like a 35 year old living in the body of a 100 year old. He was scribbling notes and stopped to ask me if I ever heard of Fibromyalgia. I explained to him that I had been conducting research on my own and that the research kept pointing me in that direction. He then stood up, walked over to the examining table, put one hand on my shoulder and told me "Ms. Ramos you have Fibromyalgia". I didn't quite understand fibro at the time and was a bit confused as to why he seemed to be consoling me. It's not a terminal illness, fibromyalgia does not progress and I finally have a name to the cause of my pain. He prescribed me Cymbalta, explained that although used to treat depression it had recently been approved by the FDA for fibromyalgia as well. I felt an immediate sense of relief knowing that I did not have a terminal illness, finally had a name to my pain and was about to walk away with a prescription that would make everything better. Things were about to change!

I started the Cymbalta immediately. Can't wait to start feeling better! Ever watched a Zombie movie and noticed how their lifeless bodies have little or no reaction to anything around them? Yup, that was me on Cymbalta. It did not allow me to laugh, cry or smile. I scheduled an appointment with my doctor and informed him that I would not be taking this medication nor any other. Did he fail to notice my last name?  Us Latina's are naturally emotional. This medication and illness would not strip me of my identity. The next few years consisted of stacking on more symptoms and the pain intensified. Fibromyalgia does not progress, so why am I feeling worse than when I was first diagnosed? I didn't think I had Fibro? In fact, I didn't want to have Fibro, nor did I want to discuss it with anyone because of the stigmas associated with it.

Stigma-Fibromyalgia is not real.

Truth-Fibromyalgia is very real! 

FM-A Real Medical Disorder

The FDA has approved three medications to treat Fibromyalgia and they are not in the business of approving drugs for fake illnesses. 

Cymbalta, Savella and Lyrica are all FDA approved for Fibromyalgia.

Stigma-It's all in your head.

Truth-It is all in our heads, research has shown that Fibromyalgia may in fact be a neurological disorder.

Neurotransmitters in Fibromyalgia

These are just two of many stigmas that caused me to construct a wall of silence. I suffered in pain, alone, and tried to disassociate myself with everything and anything fibro related. I was silently hoping for a diagnosis that came with a cure and no stigmas. Meanwhile, I was feeling worse not better. Many say that Fibromyalgia is not progressive because it does not degenerate the body; however, suffering from constant pain on a daily basis was beginning to take a toll on my mind & body.

I returned to my new PCP(I was now living in Newark, New Jersey and achieved the dream of homeownership despite the pain, fog and denial).  He convinced me that suffering in pain while there were options didn't seem logical and I left his office with a starter pack of Savella. This time I did not feel groggy and actually felt some relief (not an endorsement for Savella). It now made sense that I did have fibromyalgia. Why else would I find relief from a medication solely used for the treatment of fibromyalgia? This is the moment I started my journey through the acceptance stage and stumbled upon the road to finding relief.

Thank you to Fibromyalgia english/afrikaans for allowing me to use their two images of fibrofacts.  To see all 10, find and like them on Facebook.

Sharing is Caring!

I may not have much time to write the next few days, but that does not mean that I have forgotten about any of you.  The reason I have not posted is that I am currently attending the Leaders Against Pain Training by the National Fibromyalgia and Chronic Pain Association.  

We are ALL in this together and I wanted to remind you that we are ALL Leaders Against Pain. I hope you all have a Happy & Pain Free Day. If today is not your day, remind yourself that this too shall pass and that while the sun is shining on someone else today, it will make its way around to you. 

PS- This training is not for me it is for ALL of us!

Real Life Super Heroes

As I read the article about 12 year old Collin with Fibromyalgia in California who hand delivered a proclamation request to his Mayor and submitted letters to other elected officials including the President of the United States, I found strength.

Then we have the 16 year old on Instagram with Fibromyalgia who walks around with a service dog. This young person is currently taking online classes in order to graduate with a High School diploma and her attitude is that although some things don't get better-We do because we get stronger. Once again I found strength.

Then there are ALL of you, some of whom I had the pleasure of meeting face to face and others who I only know from contact through Social Media. You ALL helped me realize that we can lead happy lives with Fibromyalgia-despite the pain, fatigue, sleep disturbances, anxiety, depression, IBS and other symptoms. You all get it when my back hurts one day and the pain has shifted to my arm the very next day, you get it when I say I'm exhausted but can't sleep, you get it when I am so sick from my stomach that the mere smell of food makes me nauseous, you get it when I can't remember what I did yesterday let alone something I may have just said, you get it when I'm depressed because I had to cancel plans at last minute because my body just won't allow me to go out that day. You get it because you walk in my shoes everyday. You understand how it feels to wake up in the morning feeling more tired than the night before and then the night comes and you can't sleep. You know that seeing a doctor is only a piece to the puzzle and that no Doctor can help us because the science has yet to be discovered. 

You know that there is no one size fits all in living with Fibromyalgia. You understand that to smile again, you will need to self identify triggers and self manage your pain. You understand that while we have options, symptoms can vary from person to person and Fibromyalgia can affect people differently.

You know the importance of rolling up your sleeves and helping a fellow Fibromyalgia warrior when they are having a bad day. In fact you create a huge cheering section for that person and when that fails, you know to simply remind the person that this too shall pass, because it always does. Don't we all have a 100% track record of recovering from Fibromyalgia flares? You overcome adversity on a daily basis by facing Fibromyalgia and do not allow it to steal your heart or smile-You are my Real Life Heroes!

Stay Tuned!

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What are my Triggers?

If you read my last post "Run Milly Run" you would get the impression that one day I woke up began a walking regimen and POOF-Fibromyalgia was gone (well….. it is a flarey tale).

Anyone with Fibromyalgia knows that if it were that easy, there would be millions walking in droves to restore our health. Running has helped me immensely but before the running, I was on a quest to manage symptoms. I learned early on that Fibromyalgia is a personal syndrome in that it affects each person differently.  I also learned that for me cold weather was a trigger.  Weather  also seemed to be a common trigger for many; however I noticed that while one person with Fibro was thriving in Alaska there were many others there who felt as if they did better in Carribean temperatures and vice-versa (personal syndrome).  While we may not be able to control the weather and yes we can choose to pack up and move, weather is not the only common trigger. So let's start by taking control of what we can do to manage symptoms.  A guide to managing symptoms starts with a pain journal. Two of my favorites are:  http://www.catchmypain.com and http://www.chronicpainapp.com.


Once we identify triggers we can start paying attention to the signs.  A few days ago, in the midst of a very hectic day, I decided to eat a cheeseburger from a local fast food chain.  What on earth was I thinking?  I ordered the burger, knowing very well that this would cost me later. The next two days consisted of pain, fibro fog and my favorite of all Irritable Bowel Syndrome-Did somebody say Flare? 

A few years ago, I probably would have been flaring for weeks.  Why? because I did not know my triggers and would have continued making wrong choices causing a spiral effect.  Although, there is no cure for Fibromyalgia and we will ALL have bad days, we can learn to manage symptoms and hopefully the good days can start outweighing the bad days (soft hugs).

Show some Love by sharing!

Run Milly Run!

I was conditioned to believe that when you are sick you pop a pill, get rest and the next day you wake up feeling better.  While that may be true for "normal" people it is often not the case for people living with Fibromyalgia. 

Our daily reality is more like the seven dwarfs :

Sleepy-Oh those darn Chronic Fatigue Days.

Dopey-When you can't take the pain anymore and give into the narcotics prescribed by your MD.

Bashful-We just never know what might come out of our mouth-Fibro Fog.

Doc-Since Md's don't understand us we have to figure ourselves out.

Grumpy-You would be too, if you were constantly in pain.

Happy-On those HAPPY Pain Free Days!

Sneezy-Allergies are commonly associated with Fibromyalgia (along with 49 other conditions.. but we will get to that in a later post).


I tried OTC medicines, prescription medicines, sleeping more. So why on Earth was I not feeling better? I no longer had a PCP.  I now had a team of Doctors that consisted of a PCP, GYN, Rheumatologist, Gastroenterologist, Dermatologist, Neurologist and not one could provide me with any relief from my symptoms.  I started drafting a contingency plan in my head for the day when I could no longer work.  Heck-I even started questioning myself and whether this was all in my head.  Everyone else my age was out enjoying life and all I could do was push myself to work and even that was proving to be more difficult on a daily basis.  My co-workers were running marathons and here I was, unable to walk up a flight of stairs without feeling like I was about to die.  Yup… I was hating.  Why was I handed this shitty deck of cards with Fibromyalgia?

Then out of the blue one day as I reflected back on my life, I reminded myself that life has never been easy for me and still I had a 100% track record of over coming every obstacle placed in front of me-until Fibromyalgia. It was then that I decided  to  try this walking bit that everyone kept talking about. If Fibromyalgia was going to give me uninvited pain then why be afraid of pain that I cause on myself.



I began my daily walks in the park. I enjoyed the tranquility of being surrounded by nature and found it helpful in de stressing from the negativity of the day. Not only was I feeling better mentally but physically as well. I began jogging and eventually I was running, it was my way of being able to run away from everything that bothered me even if only for 1/2 an hour.  I felt the fibro pains many times and still do today.  I ignore the pain because it is my way of taking back control of my body. I registered for a 3k run for healthy kids and the goal was to finish. Guess What? I ran a 5k with a few stops to catch my breath and yes I cried when I sprinted across that finish line because I knew that although I have Fibromyalgia it does not have me.

Read my next posts to hear what else I did to  restore mind, body, spirit and soul.  Running was just the icing on the cake.

Why Blog?

I have thought about blogging for quite sometime now but kept putting it off.

Some of the reasons:

What if no one reads my blog?

What can I say to other fibro warriors that they don't already know?

When will I find the time to blog?

Well, Im here and if no one reads, at least I can say that I tried. There are many things that I can share with my fellow fibro warriors regarding my personal journey leading up to diagnosis, the struggle finding myself in a body with Fibromyalgia and finally learning to live again.  I think I might have to blog for the next forty years and still not come close to touching all of it.

Enough about why I second guess myself.  Let's get back to why we are here.  I have always been a believer that everything happens for a reason.  But what could be the reason for this Fibromyalgia diagnosis?  It was handed to me during a stage in my life that should have been one of the happiest. I was finally a homeowner, my husband and I had sorted out our relationship issues, our children were doing well in school & life, my career was just beginning to thrive. It felt as if the universe looked at me and said, so you think you can overcome anything- Try Fibromyalgia. 

This may have been my toughest battle this far but it's quite difficult to beat a person that does not believe in giving up.  In the words of Whitney-"I was not built to Break"!