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!

Sharing is Caring!

Is it time to fire your Doctor?

 As I sat in the Rheumatologist office, I hoped that today would be the day he had answers. I filled out the form as usual, circling the parts of my body that hurt,any recent changes,emergency room visits, prescription medicines and my growing list of symptoms. 

I went into his office, he reviewed my chart, asked me who had diagnosed me with hypothyroidism, scribbled some notes and then handed me a tri-fold pamphlet detailing Fibromyalgia-sending me on my way.  As I exited his office, tears were streaming down my face. I spent the next thirty minutes in the parking lot crying, angry with the doctor, with Fibromyalgia and with the world. Out of all the medical issues in the world, why did I get diagnosed with the one that is not yet understood by the medical community? What is this stupid pamphlet going to do for me when I'm in pain? Am I supposed to read the pain away? 

I've heard way too many stories similar to mine. Fibromyalgia patients everywhere leaving their Doctor's office in tears.

I now understand that our MD's are only a piece of the puzzle. I no longer expect to receive answers while I am there, unless it is a new symptom (9 out of 10 times that symptom somehow ties in to Fibromyalgia anyway).  However, they still have an obligation to treat us with Respect & Compassion. In fact, they took an oath to do just that. 

I have a wonderful Doctor-Patient relationship with my Primary Care Physician. He listens, we discuss treatment options/plans, I never feel rushed, he is empathetic and assures me that he wants to find answers just as much as I do. 

"Doctors are scientists and when we can't figure out the science, we become just as frustrated as our patients".

Your MD should be open to a patient centered care approach. S/he must be empathetic. S/he must understand Fibromyalgia and the symptoms, conditions commonly associated with this syndrome. 

List created by the National Fibromyalgia Association

If you are not content with your Doctor, you can start a Doctor search by visiting the National Fibromyalgia & Chronic Pain Association Heath Care Directory: http://www.fmcpaware.org/healthcare-provider-directory.html

Word of Mouth or Referrals are also a good place to start. Ask others in support groups or who live near you. 

Call the office and ask if the Doctor has experience in seeing patients with Fibromyalgia. 

You are allowed to change Doctors, even with managed health care. We deal with so many symptoms and conditions that our Doctor's must be Supportive, Understanding and Knowledgeable about the options available to manage pain.

Allowing people with Fibromyalgia to suffer is Inhumane & Unacceptable!

Sharing is Caring!

Fibro Fog-What? Huh?

It was the day before my wedding and we had just arrived in Orlando, Florida. We packed the rental with our four young adult children, younger sister, nephew, niece and the two of us. Before we could check in at the hotel, we needed to make one pitstop to pick up the convertible we would use the next day.  Seemed like an easy and quick task. Although, Fibro Fog had not received an invitation to my wedding, I knew from experience that Fibro Fog loves to crash parties. Therefore, I had prepared a binder in advance with all the information needed including print outs of directions (never know when you might loose wifi signal). 

Jay (my hubby :-) made one wrong turn and we were lost. Everyone in the van quickly became Compasses "we should be going south not north", "you should have turned here", "you need to go around", "if you just turn down this way".  All the while Jay is repeatedly asking me where is this place? "You have the address & you don't know"? I kept trying to make sense of the directions on my phone and the print outs in my binder. Everyone continued giving their opinion ALL at the same time. I became frustrated as it was apparent that I would not be able to figure it out. The only thing that came to mind was "sensory overload". 

At that moment I yelled "I guess no one here reads my Facebook Posts because I wrote about Fibro-Fog & Sensory Overload". All of a sudden I had a van full of very quiet & well behaved vacationers. I am blessed to have a supportive family who understands Fibromyalgia, even though at times I have to sprinkle magic fairy dust (sounds nicer than saying I yelled) to remind them about the new me. However, I can't go to work or through life yelling at people for not reading my FB or blog posts. 

What is Fibro-Fog? 

Fibro Fog is a symptom of Fibromyalgia that affects memory and cognitive skills.  Fibro-Fog is temporary and on average lasts only a few days.  Fibro Fog can be exacerbated when dealing with sensory overload, being rushed, and/or feeling anxious and almost always during a Fibromyalgia Flare.  The difficulties you can experience are being forgetful, confused, difficulty concentrating and inability to speak, inability to retain or learn new information and difficulty transposing letters and numbers.  Fibro fog can be frustrating and embarrassing as it can make its appearance without any warning sign. 

My fibromyalgia family defines Fibro fog as: 

"Fibro fog is like um, um, um, darn I forgot"~Lily C. 

"Fibro fog is like having 3 calendars; pocket, wall and cellphone with an alarm to remind me of my appointments and still forgetting something"~Sarah O. 

"Fibro fog is like living just above the clouds and trying to get back down to the ground to accomplish one thing"~Kathy O. 

"Fibro fog is like when normal people have a word on the tip of their tongue but can't get it out; except for us it's every other word while your brain hurts and feels hazy"~Milly V.

What can I do?

The day before my wedding was a sign to me that I would have to make adjustments to my plans since by the end of that evening it was becoming more difficult for me to get simple words to go from my brain to my mouth. I decided the next morning to stay in my hotel room, spend quality time with my daughter, relax and clear my mind. Thankfully, it helped and I was able to remember two simple words-I DO!

Here are a few options that may help:

-You should always try to remove yourself from the situation before it spirals out of control

-Get some rest & relaxation

-Avoid stressful situations

-Exercise (mighty endorphines to the rescue)

-Play memory games such as scrabble, word with friends, crossword puzzles, etc.

-Make sure to include antioxidants to your diet. Stress causes free radicals which causes inflammation and damages brain cells. We want these free radicals to be removed from our body quickly.

-Gingko Biloba has been used for thousands of years to improve memory and sharpen thinking. Hopefully,  you will
remember to take it.

A few years ago, my sister informed me that she was taking Gingko Biloba.  I immediately asked "Does it work"? Her response was that she kept forgetting to take it.  So I will leave you with this keep a to do list, set reminders on phone and write notes to aid you when fibro-fog decides to make it's appearance. When all else fails, get rest and remind yourself that this too shall pass-It ALWAYS does!

 Sharing is Caring!

Still Blooming Despite Fibromyalgia by Caraline Shedd

Caraline Shedd

I have always been labeled a Hypochondriac. A bump on the head or a scrape on the knee just always seemed to hurt more than it should. I would complain and complain because the pain just wouldn't go away and I would beg to go to the Walk-In assuming the worst. My mom usually didn't give in to my crazy thoughts and I learned to just "walk it off." Knowing what I know now, I probably would have "walked it off" right on over to a pediatric rheumatologist's office. 

I was 16 years old and a sophomore in high school when I started to have symptoms of chronic pain. I was fatigued and had constant muscle pain no matter how much or how little physical activity I did that day. Throughout high school, I was very active as a member of the Junior Varsity and Varsity Volleyball team, a leader in Drama Club, and a part of many other extra-curricular activities. I loved being involved in school activities and had no intention on slowing down.

I dealt with the pain for the next three years as best as I could and graduated high school on June 25th, 2011. My plan for the future involved attending my local community college to be able to apply for the Disney College Program. I loved performing and entertaining people and it was my dream to become a Character performer for Disney. After completing a year and a half of college and being denied twice by the college program, it was time to switch up my game plan. I changed majors from Liberal Arts to Communications and Media Arts and this brought on a lot of stress. Throughout college as my stress increased from seemingly never-ending life problems, my pain only got worse.  This is when I finally decided to see a specialist and after visiting my primary care doctor, I was recommended to a Rheumatologist. At my first appointment, the doctor did the routine look-over and asked me everything about my pain. She then scheduled a Nerve Conduction test/ Electromyogram (EMG) which measures the electrical activity of muscles at rest and during contraction. Basically this was to test for Amyotrophic Lateral Sclerosis (ALS) and to look for any muscular deterioration. This was one of the most painful experiences of my life. Not only was I already in pain as per usual but then to have a needle basically electrocuting me in the most sensitive parts of my body was just pure torture. I also was instructed to have an MRI done to check for blood clots in my legs. The next time I visited my Rheumatologist she informed me that both tests came back negative. She said that she had exhausted all of her options and that it could only be Fibromyalgia. I had done enough googling ahead of time after the testing to realize that I definitely did indeed have Fibromyalgia. At that point I had told her that I wanted to treat this as holistically as possible. She ignored my request and asked me if I had trouble sleeping. I replied "Of course I have trouble sleeping, I'm in constant pain!" This prompted her to write a prescription for and anti-depressant that she said would help me sleep better. I had asked her about the option of physical therapy...another muffled scoff.  After pushing the prescription back across the table, I left her office and never returned. I went home and cried frustrated tears wondering how a doctor could be so ignorant and dismissive. I was in the prime of my life and I couldn't find the strength to get out of bed to get to school let alone try to pay attention and finish assignments through the brain fog. I went untreated for the next three years and in a way became my own doctor. I have tried everything from yoga to herbal supplements and hadn't found a sufficient way of treatment. 

I graduated from SUNY Broome Community College with a degree in Communications and Media Arts with the support of my friends, family, teachers, and classmates. In 2013 as my pain was only increasing, I sustained an injury to my foot at work. I tore several ligaments in the top of my foot and was put in a CAM Walker boot for six months. This was a very difficult time for me and my Fibro because now i was lugging a five pound boot around with me everywhere. I was constantly exhausted and in unbearable pain. I ended up having to have surgery to remove a bunion and to do exploratory surgery on my work-related injury. The doctor found a Morton's Neuroma in my foot that had to be removed and fixed my bunion. This meant up to a years worth of recovery for my poor little foot. All throughout the recovery process, I was attending SUNY Oneonta and was struggling the entire semester. My dorm room was on the second floor so the service elevator was was my way up. I dreaded getting out of bed in the morning only to struggle getting out of bed, hopping to the shower, getting dressed, and having to lift the heavy elevator doors every time I wanted to leave my dorm. I eventually rented a knee scooter which made it easier to be more mobile but the extra amount of effort it took to get from Point A to Point B was too much. As much as I tried to attend class and keep up with the classwork, it didn't seem to make a difference. I was ultimately Academically Dismissed from school for the next year. I wrote a letter of appeal to the Academic Committee explaining the difficulties I had experienced during that semester and again was denied re-admittance. When I called the committee to receive a simple explanation, the women told be that my medical excuse wasn't enough and that the only reason they have the committee is for students going through chemotherapy or other medical treatments and for students who had lost a parent during the semester. It literally blew my mind that even with medical documentation and a very well written appeal letter that it all wasn't enough. This was probably one of the worst times I had experienced during my journey with Fibromyalgia. I was extremely depressed and had constant anxiety because of the situation I was in. It took a leap of faith and the constant support of my friends, family, and my boyfriend at the time. It's been a bumpy road since then but after attending the Leaders Against Pain conference, I've found a place to put all of my passion, anger, knowledge, and strength with a smile. I want to be a lighthouse for all the ones in their own Fibro Boats. I am still learning how to navigate through the crazy waves of treaments so it will be a learning process and experience for everyone. I want young people who have been diagnosed with Fibromyalgia and Chronic Pain to know that you are so much more than that diagnosis. 

There is life to live among all the pain and it is SO WORTH LIVING!

To read more: Follow Caraline's Blog at http://thelivingtreefibroandchronicpain.blogspot.com/

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.

Natural Treatments Options

If you read "What are my Triggers" you already know that Fibromyalgia is a personal syndrome and what works for one, may not work for another.

Some of you have reached out asking me to discuss natural pain options. I want you to keep in mind that natural pain options are not one size fits all either. That is why choices and different approaches are extremely important in managing pain. You must NOT give up until you find the combination that works best for you. While we may never feel 100% better-We can learn to manage pain, symptoms, triggers and start enjoying more pain-free days.

You are NOT Alone!
With Pain comes Depression. It is normal to miss who you were before the pain invaded your body.  Find a local Support Group, Trained Counselor or Therapist who understand's Fibromyalgia.  No longer being able to do the things you once enjoyed can be detrimental. Living with a chronic illness can put a strain on the strongest relationships. Talking about these issues with people who have similar experiences will help you feel understood and hopefully save the relationships that are worth saving. Explain to your family and friends that your chronic illness does not allow you to do the things you once enjoyed. Some will understand and others will not. We can be surrounded by so much LOVE and still feel alone in this journey with Fibromyalgia.

Counting Sheep does not work-Now What?

We all know that there is a correlation between sleep and pain.  The very evil insomnia wakes us in the middle of the night and does not allow us to go back to sleep. Drinking chamomile tea with a little milk and honey before bed can make a difference (grandmas recipe helps fibro too). If you have an android phone, try downloading a meditation app. You can listen to the guided meditation right before bedtime.  Keep the phone and headphones near your bed and when/if you wake, you can easily plug the headphones in and hopefully go back to sleep. If you do not have an android, you can use a meditation CD and boom box with headphones as well.

Staying Active!
It can be difficult to think about exercising with a chronic pain disorder.  However, staying active can help loosen muscles and joints so that they don't cramp up as often. When you exercise, a superhero named endorphin is released into your body. This superhero positively reacts with receptors in your brain that help reduce pain, stress and improve sleep. The mighty Endorphin pretty much behaves as morphine without the chemical dependancy. However, similar to morphine you may become addicted to Exercise.

I think I can, I think I can-I KNOW I CAN!
None of us enjoy pain but we can assist in the process by keeping a positive focus. There are many things that we cannot control with Fibromyalgia, but keeping positive thoughts and being compassionate to our bodies and spirit is within our control. Surrounding ourselves with positive affirmations and quotes will remind us to keep a positive focus during flare ups and uncontrollable pain.

You are What you Eat!
This is where journaling is crucial.  All our bodies are different and therefore react differently to certain foods.  Some of us will need to go vegan or vegetarian, start a gluten free diet or solely depend on organic products and others may find that they can tolerate pretty much any food. For me processed foods and red meat are like drinking poison. Some also think there is a connection between Leaky gut and autoimmune disorders. Personally this makes sense to me, since my 1st diagnosis was Irritable Bowel Syndrome.

Endless Possibilities!
Other things you can try are Mantra Meditation, Fibromyalgia Flotation Project, Massage Therapy, Aqua Therapy, Fish Oil, Coconut Oil, Vitamin D, Vitamin B12, Tumeric and many others……. The possibilities are endless. These are just a few options that have helped me and others in my circle.

Make sure you consult with your Doctor before starting an exercise regimen and/or starting natural supplements.

{Soft Hugs}

Sharing is Caring!

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.