"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.

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Someone I Love has Fibro by Joshua R. Ramirez!

Hi,

My name is Joshua and I am the proud son of Carmen Ramirez.

Carmen & Joshua Ramirez

At first, I had no idea what to write other than I want people to know how amazing my mom is. My mom deals with fibromyalgia, for those who might not know what that is:

         “Fibromyalgia is a syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety”.

I say my mom "deals with" not “suffers from” because positive language is a key thing I had to learn living with someone who has this daily battle called fibro in his or her life.

It's difficult living with the knowledge that my mom,

The strongest woman I know,

has moments where she feels too physically weak to get out of bed.

It’s tough when my mom will tell me something or have a conversation with me and forget it seconds later, sometimes resulting in me hearing the same thing two or more times and her wondering how I knew what she was going to say.

It’s a hard learned fact that Fibro Fog is real and there are times when I have to finish my mom’s sentences because we both know what she wants to say but she just can articulate the word at that moment.

It's hard to remind myself that while I might feel fine my mom is at times dealing with  excruciating pain and fatigue….. but she makes the effort

because My mom is SuperMom,

because My mom loves unconditionally

                and because My Mom is the strongest person I know.

People with Fibromyalgia in general may feel weak in the physical but in actuality they are people of Herculean strength finding somehow the ability to still go about their day, do what they need to get done, still be what other people need them to be.

(I mean Superman can’t even get off the floor when exposed to Kryptonite but to a person with Fibro, a rainy day might mean that kryptonite is around their neck all day and they still find the strength to be amazing.)

My mom runs a home of 8 and still finds

TIME for everyone,

PATIENCE to hear us out and

ENERGY to get out of bed on days she should really be resting, all because she wants to make sure we eat breakfast before we go to school even though all three of the above might be in short supply that day.

It's been tough over the years slowly seeing symptoms I didn't realize before or I was in denial about.

I remember walking in one morning to my moms room to give her a goodbye kiss and she was knocked out, normally a light sleeper I was surprised she didn't get up I realized it was pouring out!

For people with Fibro bad weather can be a trigger for flare-ups,

My mom probably had just fallen asleep when I was getting up and was probably in a lot of pain,

I looked and saw

her hands looked puffy, tight skinned and shiny

It made me feel powerless because

I would do anything for my mom but I can't fight this for her,

I can't

 take some of the symptoms from her
I can’t
lend her my energy
I can’t
provide her the rest she so well deserves and it’s infuriating for me so I can only imagine how frustrating it is for her, a woman so self-sufficient to feel bed ridden some days.

I’ve learned something simple like doing the dishes or making dinner for her means her hands won’t hurt as much that night,making her breakfast might give her the energy and smile she needs to get up that day,

I’ve learned that doing my best to not get her too emotionally distraught helps too as emotionally draining days usually trigger a flare-up and require a while to recover from
I’ve learned that my mom should stay away from certain foods and ingredients so I try to be mindful and not order Chinese food or things that might tempt her to take a bite and then she’s down for the count hours later.

To me my mom is still the most beautiful woman in the world and hasn’t changed in appearance since I was a kid but I also know that there is a part of me that sees when her cheeks swell, her forehead blushes from fever, her skin gets blotchy when there are patches of heat where her muscles spasm and writhe in pain and I see the blue of veins popping as her skin draws tight and it worries me.

I think living with someone who has Fibro has taught me to have all the same qualities she pushes herself to provide us like Time, Patience and Energy.

It’s taught me to be mindful of my choices and how it might affect my mom; “Can she do a walk in the park with me today?”

Not if I want her to come to some other event with me later, her energy is limited and precious and I am honored she chooses to use it on me.

It’s taught me to appreciate the time I do have with her, to continue to work on myself.

I’ve learned a lot and still have a lot to learn, I can never truly 100% understand how my mom feels but anything I can do for her and for other’s like her I will.

I had a friend in College who I later found out had lupus, because of my mom’s situation I came to understand how my friend felt sometimes when she said she was tired or needed help carrying a book.

I do pray everyday for my mom’s healing but in the meantime we are here in the midst of the battle using everything at our disposal to get through one day at a time.

I still am not sure what I want to convey to families out there who either have been dealing with Fibro or are maybe just getting this diagnosis for the first time.

There is no handbook.

There are no quick fixes.

It’s an arduous process of learning and loving.

Learn what are triggers and what can you do to minimize those?

I know for sure that I love my mom and I am proud of her and every individual out there who has to deal with the same things my mom and my family does.

I thank Milly for allowing me to write here. My heart goes out to you and whoever is reading this.

I’ll stop here as I think I’ve taken enough of your time rambling, just please remember to learn, love and apply as necessary.

Someone I Love Has Fibro by Ashley Ann Soto (Daughter of Mildred Velez)

"Throughout the years, I have found that the most important thing to remember when living with someone with Fibromyalgia is to be patient." 

In 2006, I was fourteen years old. At that age, most people are old enough to comprehend things but still not fully matured enough to understand them thoroughly. So when my mother was diagnosed with Fibromyalgia, I did not realize just how difficult things would be for her and even the rest of our family. In fact, no one could even pronounce the word! Becoming accustomed to her symptoms and finding ways to make her life manageable was not that of an easy task. As a family, our duty was to notice what things triggered the symptoms and make forth our best effort to guiding our mother (and in my dads case, his wife). 

Throughout the years, I have found that the most important thing to remember when living with someone with Fibromyalgia is to be patient. Though at the time, I did not know there was even a term for it, moms “fibro fog” was probably the first symptom we all noticed most and even at most times became extremely frustrated by. There were many cases where my mother would be in attempts of saying something to us and suddenly get stuck mid-sentence. The simplest things such as, “Pass me the —.” In frustration we all would yell,

   “PASS YOU THE WHAT MOM?”

   “WHAT DO YOU NEED?”

   “GET IT OUT!”

   “ARE YOU KIDDING ME? YOU DON’T KNOW WHAT YOU NEED?” 

She wanted the salt shaker. We did not realize at the time but our lack of patience and yelling only made the situation worse. What mom needed was a minute to think, to remember what to call what we saw as a simple object. She needed us to be quiet so that she can concentrate. I remember vividly my mother explaining to us all finally that she did not want us to help her figure out a word when she could not get it out. Many times, she would be explaining something to us and while she would forget something as simple as a name, we would give it to her. “Oh, you’re talking about Steve, mom.” However, she wanted us to simply give her time. At this point, she was learning ways to handle her sickness. Upon the many ways was allowed time to focus. And so, patience is key. 

If someone you know and love has Fibromyalgia, you may find that anxiety plays a major role in their symptoms. This is where understanding seems to fall as a factor again. Living in a house of five people and two dogs, noise is constant. As are messes, confrontations, and a bunch of other situations that can stand as stressful to anyone. For someone with Fibromyalgia, this can trigger MANY symptoms; not just anxiety. Loud music can cause headaches. And while, you and I will probably simply take an Advil and be okay, for someone with Fibromyalgia headaches can many times mean unbearable pain. Growing up, my brother and I would often times lock ourselves in our rooms like most teenagers and blast music. We thought our mom was just being an annoying mom when she told us to lower the volume. We did not always realize that our mother was most times in pain. As children, we always wanted our cousins to spend the weekends at our place. Us and our cousins meant ruckus and lots of it. “Not this weekend,” my mom would say. Though at the time we could not come to terms with this, we see now that probably meant mom was flaring, or in the midst of her symptoms for those of you not familiar with the term. We had to learn to understand that something as common as shopping all day long or attending a party with too many guests for too long of a time period could cause anxiety for mom and furthermore leave her in pain for days — or even weeks. 

When my mother asked me to write on her blog, I was not sure exactly what I would say in it. She said that I would probably have to do some research on how people can help their Fibro loved ones. Once I began writing though, I came to find that was not very necessary. I have loved my mother for twenty two years and because of my loving her, I have learned and continue to learn how to make this condition as uncomplicated as possible. I find that I am on a never-ending journey to finding out more about Fibromyalgia. And so my advice to anyone loving someone with Fibro includes to ask many questions helping yourself better come to understanding. Depression is also upon the symptoms of Fibromyalgia and if we are not careful and understanding of our loved ones, they may suffer. Be patient when they are distressed by their symptoms. Give them time to think when going through what we see as a brain fart. More than likely, they are just as if not even more frustrated than you are when this happens. Trust me though, they are trying really hard to get that word or phrase out. A simple, “It’s okay, take your time” and silence will probably be very helpful for them. Never forget to love your Fibro loved one. Never stop seeking further knowledge of their condition. Remain vigilant of their feelings. Be very observant of what causes pain and what triggers their symptoms. They did not choose to have Fibromyalgia but with your patience and understanding, this journey can be a bit less challenging. 

-Ashley Ann

I love you, Mom.