2 Sides of the Coin

Today is like any other rainy Saturday. I’m just sitting hear playing around on the net while trying to distract myself as my fibro pain remains at bay. However, I know that any second now the pain is going to hit above a level 7. Oh boy, what fun! So what do I do but torture myself by reading articles on FMS. Yeah I know- I’m smart.

However, I found an article that caused me to wonder. Turns out that the American Chronic Pain Association (ACPA) and Forest Laboratories Inc. just published some interesting results from their recent surveys- “Two Takes on Fibro: Public Perceptions and Private Realities” – designed to gather views about the condition from the general public and fibromyalgia patients themselves. 1,022 adults from the general public and 1,215 fibromyalgia patients were questioned as part of the studies. (via)

The results fascinate me because I don’t think that I’ve ever asked many of my friends about their perception of FMS or how I deal with it. According to the surveys, this is not uncommon. In fact, may of us feel that others see us as weak- hence why we hide our illness from some. The results show that the general public see people with FMS as courageous- a surprising 41% of them. And, only 17% of FMS patients feel that this is the case.

With me, it depends on who I’m calling the “general public”. People who know me personally who see my ups and downs- sure, I believe that they see me as courageous. However, those people who do not understand or worse yet, don’t even believe the existence of FMS- I think they only see my life struggles as failure. Makes me wonder just how do my friends see my illness. How does my family? My co-workers?

The surveys also showed the impact that FMS has on our lives. 

Career and Work

• 60% of fibromyalgia patients said they take more personal days or sick days.
• 70% said they have trouble completing work-related tasks.
• 56% reported that their personal income has declined due to their symptoms.
• 61% disclosed that their work life was more difficult due to fibromyalgia.

Intimacy and Romance

• 64% of fibromyalgia patients reported intimacy difficulties.
• More men (56%) than women (48%) found it difficult to be physically intimate with a partner.
• 15% of women and 25% of men reported not being able to sleep in the same bed as their partner during a fibromyalgia flare up.

Everyday Activities

• 71% of fibromyalgia patients disclosed having difficulty cleaning, vacuuming or doing yard work.
• 58% reported difficulty taking out the garbage or carrying groceries.

I wonder if I took this survey, how I would answer. My life has so significantly changed since my FMS onset, that I really don’t see difficulty with work or daily tasks. Some activities I just don’t do anymore. Like yard work- why bother when I can be out having fun on good days.

So I ask you friends, family and strangers-

How do you see people who have fibromyalgia?

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Dating: The Overlooked Luxury of the Common Man

Dating always reminds me of those National Geographic videos of animals butting heads with each other, demonstrating who is the stronger mate. Darwin’s theory at it’s finest.

Unfortunately for those of us living with Fibro, dating is not as simple as butting heads.

Fibro affects about 3-6% of the world’s population, 75-90% being women. (via www.fmaware.org) Patients with Fibromyalgia are generally diagnosed between the ages of 20-50 years old, right at the busiest times of their lives. (via Disability Secrets )

Everything impacts your health, and you learn how to adjust your daily activities in order to cope with your pain. Diet, exercise, sleep, stress, medications, and even changes in the weather can affect your overall pain levels; thus, effecting your mood and even just your desire to date, not the mention getting your grove on. So while your body is picking a fight with your love life, how do fight back?

You go to war! That’s right. Make your battle plans ladies! Put on your war paint, polish those boots, and make sure that the lovely ladies are freshly pushed up–because this band is marching right out the door!

When going into battle, the key to winning is to know what you are up against. Alter the rules of engagement to fit your comfort level, emotional and physical. And if the other side runs away scared, they best keep running, because you are worth more!

Location, Location, Location!

Picking the correct battle site is the key for any successful encounter. If the wrong location is acquired, tensions could easily arise. Avoid places with annoying bright fluorescent lights or noisy bars for risk of a total system failure. Many people living with Fibromyalgia have hyper-sensitivities. Loud noises, bright lights, and even strong odors will induce their pain.

Let’s look at the average date spot of the local pub. For a Fibromite, it might as well be Stalingrad. A pub is the classic scenario of a good place gone bad once you have Fibromyalgia. Everywhere there’s a pain trigger just looking to end your love affair. Alcohol is on the not-to-do list. It will either make you start doing the hokey pokey from interacting with your medications, or it will make your pain worse from gluten and sugar allergies. Either way you’re not getting laid, just f-ed up. Then, the noise factor of the bar will heighten your nervous system; thus, making you jumpy, uncomfortable, or just plain in pain. All in all a pub is not the best date spot for a Fibromite.

So, what hunting grounds are left for a young Fibromite?

Try a new activity

Emily Brandon has some great suggestions in her titled “7 tips for Women over 50”. Wait..a minute…I’m still in my 30s. Damn it! But hey, don’t knock it ‘til you tried it, right?

…Expand your social circle by taking on new actives such as a cooking class, hiking group, or becoming a docent at a park or museum. “Find a situation that brings people together and offers an opportunity to meet and get to know each other,” says Abigail Trafford, author of As Time Goes By. Her suggestions for great places to meet a love interest: community centers, elder hostels, music and book clubs, or other community associations.
Via Us News

Even though an elder hostel might not be the best place to meet your Prince Charming, Emily does make some excellent points. Joining community groups is a great idea to meet new people outside of the bar scene. Try participating in a hack-a-thon, an art class, or even helping plant your local community garden to meet new people.

Above all, don’t give up on the hunt. Take your time, and have fun with it!

Secrets that I keep

I’m nobody! Who are you?
Are you nobody, too?
Then there ’s a pair of us—don’t tell!
They ’d banish us, you know.

How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog! ~ Emily Dickinson

There is a secret I keep.
I store it away deep inside me. Forever fearing that it will be told to another. This secret causes many trials and tribulations in my life. For if it leaks out, how will people look at me? Will they treat me differently? Will footsteps tread lighter around me? Or will they walk away from fear of the unknown?

My secret can’t be seen.
It can’t be touched.
It can’t be heard.
Then, how do I describe my secret to others?

I get the courage to face my fears, to share my story, and to slowly unveil my secret. Then, it becomes possible to even explain.

Your journey

I forget that I have fibromyalgia. It is such a part of my daily life that it has become a part of me. But then, I meet people that remind me that times used to be different.

When I first became really sick, my illness was me. It consumed me. My fibro owned my life, and unfortunately it also owned the lives of the people who were closest to me. I could never gain a hold of my health or my life. Some of my friends left me as times got tough, and others just slowly vanished.

I digress; this is not a tale of woe, but one of triumph and success. In the last few months, I have watched one of my dearest friends face the same battle that I dealt with almost a decade ago.

We all know the story. You go to doctor appointment after doctor appointment, procedure after procedure, and surgery after surgery, just to have at least 1% of your pain relieved. You’ve even tried every single homeopathic “cure” out there. But, nothing worked. Nada. Zilch. Zero. Until one day, you discovered what works for your body. It’s like the angels parted the clouds, and you have a life again!

Now, I want you to take moment to stop and really think about the past.

What did you lose?

What did you gain?

Getting your health back is more than just that. You will see the world now in a different light. The wisdom and strength you have gained can never be taken away from you. As people around you rush forward with their lives, you appreciate yours even more. The life you live, the journey you have taken, and the path that you are now on is up to you– only you.

I’m proud of you Medea for never giving up the fight.

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.

Approach

We all have those days. You know what I’m talking about it. The days that begin at a level 4 but end at a 10. The days that you find yourself curled up in a ball, whimpering for it all to end.

And it will end. That’s the thing with fibromyalgia flare ups, they comes and goes in waves. Your stress will end. The cold rainy weather will pass. And yes, your mother-in-law will return home. The trick to surviving it is your approach. I try to do it with laughter. And on that note, I leave you with this:

Finding support on Facebook

A good support network is key to facing the many challenges that can come with fibromyalgia and chronic pain. Our friends and family help, but it is always nice to talk to people who know exactly what you are going through.

Today, just about everyone is on Facebook, a social networking site. Organizations now have a presence on Facebook were you can communicate directly not only the organization, but with others who are going through the same challenges you face daily.

Many people use Facebook over Google as an online search tool. Even in the past year alone, Facebook has closed the gap on user search preference. (via Mashable 1/20/2011) So why not use Facebook for your health support as well?

Connect with the following Facebook pages online for more support:
Foods For Fibromyalgia

Deirdre Rawlings manages this Facebook group. Follow it to receive updates on how your diet impacts your health.

Lumigrate: Fibromyalgia on Facebook

This is Lumigrate’s Facebook bulletin board to remind people of everything that is happening on their website.


National Fibromyalgia Association

When you follow the NFA’s Facebook fan page, you can connect with other fibro patients and supporters. The site posts everything pertaining to educating, empowering and encouraging the fibromyalgia community.

These are just a few examples of the social communities on that I follow on Facebook.
What Facebook groups or pages do you follow? Please let us know by sharing your comments!
Thanks!-Amy

FDA pulls Darvon off the market: confirms heart danger

The FDA asked for the discontinuation of the sales of all painkillers containing proxyphene, mostly known under the branded names of Darvon and Darvocet, because of the potential for serious heart problems.

If you are taking any painkiller that contains proxyphene, please contact your doctor to seek their advice.

Please be forewarned that the drug can cause withdrawal symptoms if you suddenly stop taking it. Talk to your doctor about how to taper off of it, and what else you could do to help manage your pain.

Brand names of proxyphene include but not limited to-

Darvon
Darvon-N
PP-Cap

Brand names that have a of combination of products

Balacet (containing Acetaminophen and Propoxyphene)
Darvocet A500 (containing Acetaminophen and Propoxyphene)
Darvocet-N (containing Acetaminophen and Propoxyphene)
Darvon Compound 32 (containing Aspirin, Caffeine, and Propoxyphene)
Darvon Compound-65 (containing Aspirin, Caffeine, and Propoxyphene)
PC-CAP (containing Aspirin, Caffeine, and Propoxyphene)
Propacet (containing Acetaminophen and Propoxyphene)
Propoxyphene Compound 65 (containing Aspirin, Caffeine, and Propoxyphene)
Wygesic (containing Acetaminophen and Propoxyphene)
Darvocet

Holiday Survival Kit in Your Purse

Have you ever been judged by the type of purse you are carrying? Kathy Eisman reveals just what our handbags reveal about our personality, inside and out in her book, How to Tell a Woman by Her Handbag. She suggests that the colors and styles of our handbags say more about our personality than most might first believe. For example, if are a woman that just carries a clutch with the basic essentials- phone, wallet, and keys- you are a minimalist with organization down to a science.

So this got me thinking, how do I go to all my holiday parties without my purse revealing, “ My feet hurt! I would really love a glass of wine, but if I do I’ll get sick- Oh, and I caked on the eye make-up to hide the fact that I’m really tired and in a lot of pain. Damn, is there somewhere comfy to sit down around here?” Through years of planning and of course many parties, I think I have finally figured it out.

Party Date Make your purse a pretty survival kit for the holidays:

Packing the perfect purse is an essential tool for managing chronic pain especially during the holidays. Temptation lies around every corner this time of year, whether it’s staying up into wee hours of the night, eating too many sweets, not getting enough exercise, or just extra holiday stress; all of it can make us grumpy, tired, and in more pain than normal. So, when you do go out to paint the town red, pack your survival kit in your purse!

Plan your survival kit depending on the length of the event and the location.
First place aside the your basics:

The Basics:
• Phone
• ID
• Insurance card(s) (health, car, etc…)
• Cash
• ATM and/or Credit Cards
• Keys
• Lip care (Some medications can dry out your lips. Carry your favorite chap stick, gloss, or lipstick with you to keep your smile looking it’s best!)
• Mint strips (Medications can give you dry mouth. Try either mint strips from Listerine or small Altoids for relief. Plus, their small size makes them the perfect purse accessory.)

As long as I can rest my feet, get some water, and find a little nosh within my diet, the above basic list can take me to any holiday party, and it fits perfectly inside any fashionable wristlet.

The Basic Plus:

Don’t know what to expect from the party? How are you getting there? Will food be served that is on your diet? How late will you be out? Too many unanswered questions? Then, carry a bigger purse for your party survival kit.

• The Basics (see the list above)
• Water bottle
• Snacks- either a granola bar, some nuts, or dried fruit
• Paper and a pen

It’s amazing what a little food and water can do to keep the party going! By stabilizing your blood sugar, or helping your stomach with your medication, a lil’ bit of food can make a huge difference. I bet you are wondering why the paper and a pen? Besides getting cute guys numbers, just kidding (not really) I use it to write notes to my friends such as, “I’m tired, I’m going to catch a cab home. See ya! Love Amy.” Or just “Can we go soon?” In a big, loud party a simple note works wonders instead of trying to yell into your friend’s ear.

Other things to carry:

• A scarf or a wrap- Tend to get hot/cold a lot? Stay comfortable with an extra layer.
• Ear plugs- A party can sometimes be too loud. Need a break from the noise, but you don’t want to leave yet? Try on a lovely set of earplugs to step away from the main action. The really cool thing is that no one will notice. Everyone will just think you took a look around, or sat down for a bit.
• Anti-bacterial lotion (Purell)- Holiday season= flu season! Keep yourself sanitized.
• Hand Lotion- Medications and cold weather can make your hands dry. Help keep them soft and comfortable.

Arm yourself with your own holiday survival kit, and you will always be the life of the party!

Fun blogs to read:
www.girl.com.au
chick lit is not dead

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

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