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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