"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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Baby it's Cold outside

I enjoy snow sledding, snow mobiling, the aroma of burning wood and fresh pine in NJ during the winter and traveling through NYC penn station and seeing it transformed into a Winter Wonderland.

What I don't enjoy is the way my body reacts to cold. My fibromyalgia usually runs rabid whenever there is a drastic change in temperature and ALWAYS during times of Rain.

Rain, Rain go Away, I have fibro and the pain is not welcomed to stay.

It may be cold outside, but there are ways to keep our bodies warm.

Ugg boots are the best shoe ever made! They can be a bit pricey and may not go with every outfit but they keep my feet warm which in turn makes me comfortable. I can always be more fashionable in the warmer months when I feel better and can choose from a wide variety of sandals. Life is about making compromises anyway.

I have traded in Soda for Tea. This is a win-win situation. We have all heard the disturbing side effects of soda and the wonderful benefits of drinking tea. The tea keeps me warm and helps with other issues as well. Peppermint Tea aides with the symptoms of IBS and Chamomile aides with winding down after a long day.

I could not survive a winter without my heating blanket. I remember walking through Walmart, noticing heating blankets on sale and thinking that would be a nice gift for my mom when she is elderly and needs to remain warm. My mom has yet to receive one for Christmas; however, it is the best $19.99 ever spent. It not only helps me stay warm during the night, it also feels nice to get in a warm bed after coming in from the cold (I use it as the top sheet, not as a cover).  I also learned something new-heating blankets are not made only for the elderly.

Warm baths are my new best friend. That is until the water heater decides it needs a break. I've never really believed that taking breaks from relationships were beneficial to either party but my relationship is with the warm bath and not the water heater. Guess this proves that relationships are really only meant for two people. The warm bath in the AM helps get my body warm and ready to tackle the winter cold. The warm bath in the PM helps get my body warm after being out in the cold and is a relaxing way to wind down after fighting fibromyalgia all day.

This is how I tackle the Cold & Rain in an attempt to manage symptoms. When all else fails, I remind myself that this too shall pass and it ALWAYS does!

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How can you do it All?

This is usually the question I am asked after I inform someone that I have Fibromyalgia. The answer is that I NO longer do it all. I gave up my volunteer work, I gave up cooking everyday, I gave up spending time with friends, I gave up cleaning my house everyday, I gave up being obsessive, compulsive & controlling (this maybe a good thing to have given up) and I gave up my memory which doesn't allow me to remember all the other things that I gave up (not by choice-smile). 

All of those things were traded in order to conserve energy. Energy that can be used with family or educating myself on holistic approaches that aide in managing symptoms. When I am not successful, I just fake feeling well. Why fake it? Because although for the most part peoples intentions are genuine and come from a place of concern; discussions about me not feeling well often lead to pity parties. I understand & respect the need to vent, as there are many times that I do this myself (hence why I blog). However, a pity party is very different and is of no use to anyone, since it usually consists on dwelling on the issue which often leads to stress and depression.  We all know that stress and depression are the highways leading to only one destination-Fibromylagia Flare.  I do not do it all and my life has changed FOREVER but I am only looking back in order to see how far I have traveled.

Keep in mind that Skills are taught, Attitude is influenced but YOU bring the Resiliency! 

 

Every time your back is against the ropes you always find a way to free yourself and fight back. 

YOU ARE FIBROSTRONG!

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