Use Twitter #hashtags to find support

You can use Twitter hashtags to find people, organizations, and research. They are a wonderful way to organize tweets, find people with similar interests, and find topics that appeal to you.

@fibroflr


You can also follow my tweets @fibroflr

However, like anything, too much information of one thing can be a bad thing. Mark Twain said it best- “Be careful about reading health books. You may die of a misprint.” I like to remember that whenever I do research on the internet. I should just have it inscribed on my laptop in bold letters!

Here are a few #hashtags that I like to follow and search on Twitter:
#fibro
#fibromyalgia
#pain sometimes this hashtag will produce too much
#FM short for fibromyalgia
#FMS short for fibromyalgia syndrome
#spoonies great to use just to chat with fellow fibro people online
#FF Follow Friday- an event that happens on Fridays, people will tweet out who they recommend to follow. It’s a great way to learn which users to follow.

For more info on how to use Twitter #hashtags, read Mashable’s post on the topic.

Fentanyl Recall

Many chronic pain patients take extended-released medications to help regulate their pain. Similar to once a week birth control pills, extended-released pain medications give chronic pain patients a steady stream of medication without letting them worry about when to take their next dose. After all, it is always easier to manage your pain that it is to subdue it.

I have tried many types of extended-released medication, everything from birth control pills to topical lidocaine patches. Unlike short acting (2-4 hours) medications, extended-released meds can be difficult to tell when they are not working correctly. Hence, why I find this recall very important to tell you about.

This week Actavis Inc. announced a voluntary recall to the wholesale and retail levels only of 18 lots of Fentanyl Transdermal System 25 mcg/hour C-II patches manufactured for Actavis by Corium International in the United States. (via) The company said that they were unaware of any patients who had experienced adverse effects from the products. (via)Reports say that the patches are releasing the medication at a faster rate than intended. Patients treated with a patch that releases fentanyl faster than intended could experience symptoms of opioid overdose, including excessive sedation, respiratory depression, and apnea. (via)

Please read the following for more information:
Actavis Press Release: 21/OCT/2010
Med Page Today

All Wheels 4 Fibromyalgia

Who says you can’t do it? Follow the team as they race across America!

” A cycling team of four cyclists and 12 crew members will race nonstop for 3,000 miles across the United States in the world’s toughest bicycle race the Race Across America (RAAM). The race begins on June 12, 2010 in Oceanside, Calif. and ends in Annapolis, Maryland. The objective is to complete this coast-to-coast race in the fastest time the goal is 6 days!
Mission:
The team’s endeavor, however, goes beyond completing this rigorous race. All Wheels 4 Fibromyalgia is partnering with the National Fibromyalgia Association, and select sponsors in a shared ambition to raise awareness of fibromyalgia, a complex pain disorder that affects an estimated 10 million women, men and children in the U.S.
Products:
All Wheels 4 Fibromyalgia will be raising funds to support fibromyalgia research and community-based education programs for individuals affected by the disorder. The team’s goal is to raise $75,000 by June 12.” (via All Wheels for Fibromyalgia’s Facebook Page)

Here are all the links so you can get involved:
Follow them on twitter as the team speeds along! @allwheels4fibro

Photos from 2009 All Wheels 4 Fibro! on Picasa

Want to help? You can donate to the National Fibromyalgia Association.

Life changes; going with the flow

Dealing with chronic pain for so many years, I have had my share of health insurance headaches. Actually, I think by now my brain is hard-wired to just have a headache anytime I hear the word health insurance. Ouch, there one goes again.

Recently, I started a new job. Which means switching to COBRA, then over to my new company’s insurance plan. While I was in the process of switching to COBRA, they decided to stop carrying my old health plan, unbeknownst to me, COBRA, or either of my health plans, old or new. Sometimes, I wonder if there is a man behind the big green curtain just messing with my medical insurance to watch me go insane. Really, if he is out there, he is winning!

This entire ordeal took place during the time I ran out of my medication. If you are reading my blog, you know exactly how freaked out I felt to be out of my meds. They help me sleep, get out of bed, and basically function as a productive member of society. At the same time, they add nausea, constipation, mood swings, appetite issues, and brain fog to my already complicated medical history. It’s truly a love-hate relationship.

After many phone calls and trips back and forth to my very patient pharmacy, I was finally able to resolve some of my insurance issues. Wait, I said some. To make a long story short, I was not able to resolve all my insurance issues. This has left me without one of my medications for about three weeks. I thought that this would leave me with many sleepless nights while suffering in pain, and not having the resources or strength to make it through a full day of work.

But au contraire, my pain is under control! If there is one thing chronic pain has taught me, it has been how to meet life’s challenges head on without fear. I knew the only way I was going to make it through my insurance debacle, was to think straight. The only way I can do that is by not being in pain. If I can’t have my medications to help me, what other things could I do to help myself? I watched what I ate, my activities, and my stress levels. Everything I really should be doing to stay healthy anyways, but now I was on survivalist mode. And you know what? It’s working! I have been able to make it through my days with less medication.

So please don’t forget, just because things might look worse for you one minute, give it a few. Think of how to react to your world around you and what is best for your body. Find your inner strength to meet your challenges. You never know how it just might turn out for you when you do!

When life gives you lemons, make lemonade!

I love to be in the heart of the action. I love the rush, the thrill, the feeling of your heart beating out of your chest as you are about to reach your goal. With my Fibro, I now have to watch on the sidelines. I can’t run at the head of the pack, for when I do, my body only stays there until it gives out, and I end up paying for my over exertion. You pay to play. And, my Fibro makes me pay a lot. It’s taken me years to figure out the checks and balance system of this syndrome, and I am still redoing equation as I go.

That’s the most confusing thing about Fibromyalgia, how to balance your life with your disease. Because they are not the same yet they do affect one another. As soon as you figure one thing out, another changes on you.
For comparison, let’s take a healthy individual in their early 30s; we’ll call her Jane. She eats right, exercises, and gets plenty of sleep, just like me. On the outside we look the same, except I have the added bonus of living life with Fibromyalgia. Which in simple terms means that I am always in pain. I have to continually work on gaining control of my body. Jane and I might look the same on the outside, but we are worlds apart on the inside.

If Jane slips on her diet, she might gain a few pounds. No doubt the same thing will happen to me if I ride the same slippery slope; however, my diet diversions come with extra perks, which are not polite to speak about in public. If I followed the rules and was a good girl, I would be eating a very restricted diet, saying goodbye to some of my favorite vices like sugar and caffeine. In fact, most fibromites avoid many of the delectable delicacies that life has to offer, sticking to an alcohol, sugar, and gluten free diet. Life is too short. I take what I can get in small doses. I don’t know how I would eat gumbo without cornbread. It just wouldn’t be civil.

When Jane falls behind on her excise program, she might lose a little of her muscle tone, or her jeans might be a lil’ tighter. It takes her a few days to get back in line. If I fall behind, I feel it everywhere, not just in my jeans. My joints hurt, my bones ache, and it takes every ounce of effort I have just to get out of bed. To make it worse, my bowels get out of whack, and I have trouble sleeping. The longer I leave my dancing shoes off, the harder it is to put them back on; nonetheless, all the more reason I should.

I try to get a full 6-8 hours of sleep every night. Yet when I wake up in the morning, I might as well just have taken a two-hour nap. With Fibromyalgia, your body never goes into full REM sleep mode. Your muscles might continually twitch throughout the night, leaving you tired and sore in the morning. ‘Jane’ can go out with her girl friends dancing all night, get three hours of sleep, and then, maybe she might just feel the same way I do on a normal Monday morning.

Having said all that, this is not a tale of woe. This is not an explanation of how ‘Jane’s’ life is easier than mine.
This is a story of triumph over obstacles. Remember my checks and balance system?
Check one, a normal gal, ‘Jane’ can eat a normal diet.
Check two, ‘Jane’s’ exercise program is easy to develop and maintain, compared to a person diagnosed with Fibro. Check three, ‘Jane’ can maintain REM sleep patterns in order to feel rested after a full night of sleep.

But how does the balance side of the equation come into play? My negative checks far out way the positive side of the calculation. Sure on the outside ‘Jane’ and I look alike. Two healthy looking young women, who eat well, get 6-8 hours of sleep, and exercise regularly. But why with all my constant pain am I better off than her? That’s right, read it again! I said with all my constant pain, I am better off than her.

I have learned to look at life with a different set of eyes. I think the saying goes, “when life gives you lemons, you make lemonade.” Yes, I am tired all the time. Yes, I hurt all the time. Yes, I don’t get to eat or drink just anything that I want in the world. And yes, my exercise program is not easy to keep up or forgiving. But with all these issues, I have learned to accept them, work around them, and dare I say it, almost enjoy them.

My value system now is keenly different than what it was before I was diagnosed with FM. I find that the littlest things do not bug me anymore, except when my pain is at its worst. You see, there are few days where I feel close to 100% well; days where my body does not hurt, my muscles do not ache, my mind is clear, my bones are strong, and my bowels are fully functioning. Of course those days are few and far between. Actually, I think I can count on one hand how many perfect, pain free days I have had in the past year alone. And on those days, those precious days, that is when I am truly alive.

Now, you must be wondering how do I make my lemonade from such sour lemons? Finding beauty in the smallest things is key. I love hearing live music, but the loud thumping bass and large crowds make my nerves stand on edge. That kind of made rock concerts out of the question. And mosh pits at a punk show, yeah right, ain’t gonna happen! So, my musical lovin’ brain and my body had a little heart to heart chat. Now at the performances I attend, I will either sit down, or stand in the back away from the bass and the crowds. If I really need to get my angry punk self on, I blare it from my truck in rush hour traffic! There’s nothing better to calm my nerves than Fumanchu singing King of The Road on the 101 at 8am! Over the past five years, I have discovered a new love for 20th century composers as well. I thought Beethoven had fire in his arsenal, then I heard Shostakovich, and my mind was blown away.

Before FM, I used go out at night to dance clubs. I was really never a drinker. My friends would go out to drink, and I would dance. I would like to feel the music through my body. Dance gave me that, and for a while Fibromyalia took that away. It was not until I found opera, ballet, and jazz, did I find that just seeing other forms of musical performance could help me feel the music without hurting.
Opera fills your entire body with emotion. The scenery fills your eyes with visions unlike your daily world. The sounds are so emotional that they help me escape the pain I feel. The opera itself transforms you into another world.
I loved all of these forms of art before my illness; now, I love them even more.

Thomas Moore said it best, “To the soul, there is hardly anything more healing than friendship.” My friends and family are now more important to me than ever before. They help keep me sane in the darkest hours. And they are there to help celebrate the best of times! Without them, I would not make it through many of life’s challenges. I don’t know if it being older, wiser, or the plain fact that with FM, I just don’t have time to mess around with any bull or drama, I now am very picky with my quality of friends. I might have fewer friends in numbers than I did before I was diagnosed with FM, but what I lack in quantity, they make up in quality!

And even when my life seems to have too many sour lemons to make any lemonade, I find sweet pleasures everywhere I turn. It doesn’t always have to be perfect to make me smile. The weather might be gloomy outside. I might be flipping a coin to try and decide to take 2 or 4mg of pain medication. My heating pad might as well of been unplugged for all the help it is giving my lower back. And yet, there is still something to smile about, if you know how where to look for the simple pleasures in life!

My simple pleasures: morning light on a dew drop, star lit nights, the smell of fresh rain, a nice cup of tea, a good book next to a fire on a cold night, my soft pillow, my bike on a twisty road, mixing yogurt w/fruit on the bottom, sharing good food with a friends, watching kids marvel at the fish feeding at the Cal Academy of Science, Tosca’s aria during Act II, and my list goes on…

What are some of your simple pleasures?

thanks to Sally W. Pruden for her beautiful lemon picture
See The National Pain Foundation’s Triumph of the Spirit Awards

Weathering the Storm


Have you ever driven through a town after a massive hurricane? The town looks worn down, beaten, but in a way stronger because it has made it through the storm, and will live to see another day. When you live with a chronic pain condition, your body feels just like that town, worn down and yet in a strange way it grows stronger.

Growing up in the south, you learn to listen to the weatherman during the same time every year and just prepare for stormy weather. Once and a while, the “big one” hits, and when it does, there is no doubt what must be done. Time to board up the windows; place sand bags where needed; bring the potted plants and garden furniture inside, and just batten down the hatches. There’s no use trying to hide.

Living with a chronic condition is like living in the storm belt of the south. Each condition has its own health hurricanes, as it may. After a while, you learn how to predict when they are coming, and how to prepare for them. The hardest part is learning to listening to your own body and taking the proper precautions before its too late.

Just like with any natural disaster preparation, when it comes to your health, making an escape route or a game plan can be your greatest ally. When a crisis hits or your pain is at its highest level, it is hard to think straight which can make it difficult for you to eliminate your pain or communicate to others what you need.

An easy way to make a pain relief strategy is to simply make a few lists of what types of pain you have, what makes that pain better, and then what makes that pain worse.

It sounds like a lot to do. But simply start brainstorming your lists together and it’s amazing what you will discover about yourself. Do the lists in whatever order feels best for your situation. Remember there are no right or wrong answers here. Just be honest with yourself.

List 1) Pain:
What types of pain do you have?
Write down whatever comes to mind. You can list physical and emotional issues here.

Examples: trouble sleeping, depression, all over body aches, headache, sharp right hand pain, dull lower back pain, constipation, etc.

List 2) Solution/ Therapy:
What helps you? What makes you feel better.
(I have done this list two different ways. I have simply jotted down things that help me out, and other times I match specific therapies to a type of physical or emotion pain.)

Examples: Heating pad, hot bath, medication, cold compress, stretching exercise, diet

List 3) Stressor/ Cause:
What makes things worse?
I find this list the most difficult to do. Take your time writing down things that you know make your pain worse. You might want to just keep a journal, and note how you feel each night before you go to bed. Write down in your journal any activities or changes in your routine that impacted your condition.

Examples: diet, sleep pattern, weather changes, money stressors (I notice that after talking to the health insurance companies my pain increases the next day), airplane travel, exercise (over or under doing it)

Now match up with your lists, pain with solution/therapy to stressor/ cause. When you are done you will have a chart that will help you listen to your own body. And when you can’t think because the pain is too high, all you have to do is look at your list.

Remember that this is just guide for you. It can be changed, altered, or simply thrown away and started all over again. Don’t be afraid to learn and grow. You have weathered the storm and you will be better for it.

Gluten free and tasty? How can that be?

flourless-brownieWhole foods just posted a great recipe on their blog (via) for a gluten free brownie recipe! Here’s the kicker- are you sitting down?- the secret ingredient is black beans! Who would of guessed? My sweet tooth and curious nature really wants to bake them for all my friends. Then, see if they can tell the difference between gluten free brownies and the ol’ wheat flour made brownies! Maybe at the next dinner party, I’ll try an experiment!

For the recipe from Whole Foods : Gluten free brownies

Other great gluten free sources:
www.glutenfree.com

Gluten Free Living Magazine

Bette Hagman:
The pioneer of gluten free cooking. Her cook books are wonderful. If you are planning on making your own bread, her cook book is a must in your kitchen!
Read more about her:
Macmillan Books

Bread Flour Formulas: Celiac Spruce Association

Men and fibro

I love my father for more reasons than I can count. He is by far the greatest man I have ever known. My father has stood by me through all of my endeavors. During all the ups and downs with fibro, my Dad is there to hold my hand, wipe my tears, and make me laugh. But, I do wonder how my health condition effects him?

mhnThe Men’s Health Network is conducting a survey to gauge just that. They have teamed together with the American Pain Foundation and National Fibromyalgia Association to conduct this survey nationwide. Fibromyalgia is typically labeled a “women’s” disease. However, it does not discriminate, and men are affected by it too. Only about 10-20% of all fibro patients are male. Men are raised to be strong and not show pain. Overall, males tend to be less vocal about their health condition. The associations conducting this survey believe the numbers of recorded male patients affected with fibro is not accurate.

If you want to learn more about the survey, please click on the following link:
www.menshealthnetwork.org/fmsurvey.php.

News articles about this:
Medical News Service (posted 8/19)

PR News Wire (posted 8/18)

The National Fibromyalgia Association goes big on social media

n27225676432_9769I have been a member of the National Fibromyalgia Association for some time now. They are a wonderful organization to gain insight and find resources.

Please take a minute of your time to watch this short video from Lynne Matallana, president and founder of the National Fibromyalgia Association:

Or, you can read the email I received from them:

“The National Fibromyalgia Association launches campaign to reach
10,000 Facebook Fans by October 1.

ANAHEIM, Calif. (Aug. 3, 2009)—The National Fibromyalgia (NFA) has launched a campaign to get 10,000 “fans” on their Facebook Page by October 1, 2009. (A Facebook Page is an organization’s public profile that allows them to share news and announcements with Facebook users. “Fans” are Facebook users who follow the organization’s posts and are able to share them with their own network.)

The campaign, called “10,000 for 10 Million,” refers to the 10 million people in the U.S. who are suffering with fibromyalgia, the complex chronic pain disorder usually characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress.

“10,000 for 10 Million” is the NFA’s first major social media campaign on Facebook, and aims to raise awareness of fibromyalgia and the National Fibromyalgia Association through the popular social networking site which attracts over 90 million visitors per month.

Lynne Matallana, president and founder of the National Fibromyalgia Association, admits that with just two months to reach their target goal of 10,000, the campaign is ambitious. However, the need to bring awareness, help and hope to those suffering with fibromyalgia is even greater.

“We want to let as many people as possible know about fibromyalgia and the NFA, and Facebook is one of the most powerful ways to do that,” explains Matallana. “We also want to empower the fans to share this information with their friends and family members. It takes just one or a few clicks on your keyboard to become a fan of the NFA’s Fan Page or to share the page with your Facebook friends, but those few clicks go a long way to show support for those 10 million people suffering with this disorder.”

When I logged on to Facebook today, they are less than 1,000 fans away from their goal of “10,000 for 10 million” campaign!

Let’s help them reach their goal!
You can reach The National Fibromyalgia Association at www.fmaware.org to become a member of the organization.

To become a “fan” of the NFA’s Facebook Fan Page, go to: http://www.thefibromyalgiaassociation.org/ and click on the Facebook icon. (NOTE: New Facebook users must first sign up on the Facebook homepage before accessing pages.)
or click on here

The sky is the limit on where these social connections can go!

Keep a Pain journal….on your iPhone?

For years now, I have kept a fibro/pain journal. I use the journal to help manage my overall health and pain. With an illness such as Fibromyalgia, it is very difficult to tell which event or series of events affected the way you feel. Am I having a pain attack because I only had 4 hours of sleep two nights ago or was it the ice cream I ate today or the stress of my job or….the list could go on. By keeping a journal, I am able to tell what factors make my pain worse, and what makes it better.

When I first started, I was very diligent about my entries. I marked everything down I ate, every pill I took, and every hour I managed to sleep. I wrote down what helped each type of pain my body went though daily. Over time, patterns began to show. For example, I learned that if I get less than 6 hours of sleep, my nerve pain located in my hands is worse the next day. The journal is also very helpful to bring to all my doctor appointments. I can tell them what is working, and what is not. Whenever I switch medications, I keep track of how my body is adjusting to the new regimen. It makes it easier to describe through the fibro-fog how I feel when it is written down in my journal.

But, just like any management routine, keeping a journal can be a painful chore itself. My frequency of journal entries is not like it used to be. I find that I write in it more on a monthly than a daily basis. Which, makes it very hard to tell why I hurt when I do and how to make it better. For example, do I hurt more today because I walked 2 miles on Sunday or is it that I only took one Alieve this morning. So when I purchased my new iPhone the other day, the very first thing I did was to look for apps that would help simplify my pain journal entries.

I first found an app called Zuri, from Zume Life. It looks great. And it tracks everything! zume.img_assist_customYou can try the first month for free. BUT,…..after that it is $35/month or $300/ year for the service. Your subscription covers you for the iPhone app and a log-in on their website. Even though Zuri, looks great, and has all the features I am looking for in a web 2.O based tool- $300/ year is just too much! So my search continued…..

I found another iPhone app called Pain Tracker. The best part is it’s free! paintracker-iphone-58445.185x185.1249536989.6297
And very simple. The program consists of three parts-
1) your level of pain on a four part scale,
2) where your pain is located, and
3) a place to put notes.
Then, it can chart your pain levels over a period of time for you. So, at your next doctor’s visit when they ask, how’s your pain been in the past 30days- you not only have an answer, but you have a chart to show them! paintracker-iphone-58445.320x480.1249536992.18585
To use Pain Tracker, you don’t have to log into any web site, and each entry is automatically dated and chronologically stored for you.

This app is very simple and quick to use. I have just started using it, but my hope is that in a few weeks I will be able to track a pattern in my pain levels. This will not only show how much pain I am in, but it might help explain why I am having pain attacks.

I will continue my search for tools to help manage chronic pain, iPhone apps or otherwise. Be sure to check back with this blog, I’ll update it to let everyone know how the Pain Tracker app is working for me.

Please fill free to comment if you have any tools that work to help you manage your pain. Thanks!

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