If only I could dance in the rain

Sleep through the storm, dance in the rain, party in the sun, run with the wind 

but throughout it all remember to listen to your body when it is speaking to you.

Why is it that our bodies react to weather changes? Is this where the term weird science derives from?

I swear that my body can predict weather better than any meteorologist. Last week, people across the Northeast scrambled to prepare for "Winter Storm Juno". The National Weather Service was referring to it as a "historic storm". As I tuned into the news channels for updates, it felt strange that my body was not spiraling out of control. A fellow fibro warrior text me to say she had been following the news and saw that we were getting hit with a major storm. She wanted to know how I was feeling. My response "my body is not acting up yet so let's see how bad this storm really is". I had the common daily aches and pains which I have learned to push through, ignore or have since developed a resistance to. What I was preparing for was the excruciating back pain, headaches, fibrofog, pins and needles, burning sensation, numb arms, hands and feet. Basically my very own personal storm Juno wrecking havoc on my entire body not just the upper left quadrant.

Cold weather dry or wet almost always exacerbates my symptoms. I believe this may be caused by the heightened demand on an already overworked body. During extreme cold weather, bodily heat rapidly leaves the body causing your body to use more energy and resources that may have already been exhausted from dealing with chronic illness. Smaller blood vessels tend to spasm in lower colder temperatures as well. Some theory's regarding what causes fibromyalgia have suggested that small blood vessel constriction caused by an overactive sympathetic nervous system is the problem. If this is indeed true then we can understand why cold temperature would affect our bodies. Maybe the science is like a weird family member trying to get their point across. The message is clear but the delivery seems to always be the problem.

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Let's Move

This morning I woke up with a stiff back. I immediately knew it was my body reminding me to get moving.  When you have a chronic illness it is difficult to consider exercise. Even the simplest task such as bathing can cause pain and drain your energy. However, low impact exercise can ease some fibromyalgia symptoms and help boost energy.

Here are a just a few that I have tried:

Yoga-Symptoms can be reduced by practicing the mind & body technique of yoga.
Walking-Helps build stamina, reduce stiffness and boosts energy.
Light stretching-Aides in increasing flexibility and loosening tight stiff muscles. I do these in the AM before I get out of bed.

The benefits of low impact exercise I have noticed are:

It releases endorphins to the brain which assist with Fibro Fog.

It assists in not allowing muscles and joints to cramp up as often.

It gives me extra energy which means I get one or two extra spoons that day to use on whatever I choose.

I lost 26lbs in the process while still enjoying my favorite foods.

My body may sound like a bowl of Rice Krispies afterwards but my back, knees and muscles are less stiff and tense.




Before starting an exercise regime please check with your Doctor as they are the holder of your Medical History and will know better than anyone if Exercise is an option for you in managing pain.

You CAN have your cake but you CAN'T eat it too!

I no longer have perfect skin. Rosacea is commonly associated with fibromyalgia. Rosacea is a  skin condition that causes redness in your face and often produces small, red, pus-filled bumps.

I no longer have a full set of hair. Autoimmune disorders are commonly associated with Fibromyalgia, mine happens to be Hashimoto's Hypothyroidism. Hashimoto's is an autoimmune disorder in which the immune system attacks the thyroid. One of many symptoms is hair loss or alopecia. 

I no longer enjoy a full nights sleep. Insomnia is commonly associated with Fibromyalgia. Sleep problems with fibromyalgia include insomnia or difficulty falling asleep as well as frequent awakenings that you can't remember the next day. 

I no longer have unlimited amounts of energy. Chronic Fatigue Syndrome is commonly associated with fibromyalgia. People with fibromyalgia wake up feeling exhausted with little to no energy due to the sleep disturbances caused by the insomnia.  Life with fibromyalgia is a domino effect. 

I no longer have a photographic memory. Fibro Fog and cognitive impairment are symptoms of Fibromyalgia.  Fibro Fog consists of confusion, memory lapses, difficulty concentrating, mixing up of words and numbers. 

Fibromyalgia took my perfect skin, hair, sleep, energy and photographic memory but it CANNOT take the principle of my life and existence-My Soul! 

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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.

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"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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Wonder Woman Meets Fibro Woman

I am not changing my life! I enjoy taking care of everything & everyone. Fibromyalgia will not hold me back from continuing life as I know it. That is the mindset that prevented me from managing pain and continuously crashing into that wall we refer to as a Fibromyalgia Flare.  

I HAD to make changes in my life, although I didn't WANT to. I was taking care of everything and everyone while failing to take care of myself. The most important changes were learning to Say NO and Pacing Myself. That combination made a huge difference in managing pain.

I had to learn that saying NO to others meant saying Yes to me. I am now able to create healthy boundaries in relationships by saying No. I make sure that I do not cause myself a flare by overextending myself or putting too much on my plate. There are still times when I can't avoid putting too much on my plate. During those times, I remind myself that it is acceptable to leave  leftovers for tomorrow, it is acceptable to have a messy house (work in progress), it is acceptable to start the next day with a full to do list, it is acceptable to ask for help. How else would I find the energy to conquer mountains that I cannot climb? 

I know that there are many things I will never be able to control, so I manage what I have within my reach and that always begins with not overextending myself. I am not limited by Fibromyalgia, the only limits that I have are the ones that I have set for myself, which are NONE. I just had to learn to live life differently in order to unveil the life I once knew.

Fibro Woman does not need a cape, lasso or indestructible bracelets, her super powers are within. She manages 1-20 symptoms on a daily basis including Chronic Pain and Fatigue, She is an advocate for herself and 10 million others like her, She is Physically, Mentally and Emotionally drained. At first glance you would not know any of this because she allows her BEAUTIFUL Smile & Strength to outshine all the Fibromyalgia Villains. She is Fibro Fierce!

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