Things to Remember When You Have Fibro

After living with fibromyalgia for over a decade, you’d think that I have this condition all figured out. Right?

Well, not quite. I still have to remind myself a few things. So, I made a lil’ deck to help myself and others remember the simple things to help cope with fibromyalgia.

Do you have fibro or chronic pain?

I’d love to hear what simple reminders help you out. Please let me know in the comments below.

5 Myths About Fibromyalgia

Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you or a loved one has been diagnosed with fibromyalgia, you may come across some myths and misconceptions while trying to learn all you can about the condition.

Here are the top 5 myths I always hear about fibro:

1. The China Doll – Fibro patients are fragile.

This myth can’t be further from the truth. Sometimes, fibro patients can be emotionally and physically sensitive, but it takes a ton of perseverance and strength to live with fibro. We can’t measure our strength by the number of miles we run or the number of pounds we bench-press  — instead, we measure our strength one day at a time. Today, I am strong enough to get out of bed. Tomorrow, I am strong enough to clean the house. And, the next day, I might be strong enough to try to take over the world… mu ha ha ha

But seriously, everyday it takes great courage to just keep going – to live our lives to the fullest, no matter how much pain we are in that moment.

2. It’s all in your head – Fibro is a made up disease.

Just because you can’t see it, doesn’t mean it does not exist. In the beginning, Fibromyalgia was a last resort diagnosis. One was tested for everything, and when nothing could be diagnosed with certainty, the doctors said you might have fibro. However, that ‘s not the case anymore. Every year, more and more is discovered about the disease — and not just how to diagnosis it. In the early 1980’s, doctors developed a pain point test to diagnosis fibro. Today, “researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.” via MayoClinic

Being that a fibro patients’ brains process things differently, one could say it really is “all in our heads”.

3. The pain can’t be that bad.

At first glance, it might look like the daily pain of fibro isn’t that bad. Daily fibro pain is more exhausting than anything. Imagine that you have an all over body pain, similar to a flu-like-pain, every day. Yeah, it’s just like that.

But then, there are the pain attacks. I usually get one at least once a month. I love to put my best foot forward, so during my attacks, I tend to hide. (Pain attack = hermit.) So most of my friends don’t even know how bad the pain can really be — like kill me now type of pain. Though, I’m never sure if this hide-away-during-pain-attacks is better or worse for my friendships.

4. Fibromyalgia is a women’s disease.

Research shows that about 80-90% of those affected in the US by fibro are women — leaving 10% are men. Now, I’m never sure if this is because women keep trying to figure out what the hell is wrong with them or that men give up trying.

5. There is nothing that can be done to treat Fibromyalgia.

There is no miracle cure for it. But, there are a ton of things from homeopathic to western medicines that can help ease your symptoms. The trick is finding which one, or combination of ones work best for you. And remember, what works for some, might not work for others. So, why advice is nice, it’s best to listen to your own body as you figure out what solution works best for you. However, there are a few that work for almost everyone – diet, exercise and reduced stress.

Fibromyalgia is still a “new” disease. We are still learning new things and constantly debunking myths about it. What have you learned lately about fibromyalgia?

Stay or go? Adjusting to Fibro in a Relationship

images-1When you have been dealing with a chronic illness for over a third of your life, it becomes a part of you. It’s your version of normal. However, it’s only your version, not everyone else’s. And, this is never more apparent than when you are in a relationship.

No one ever tells you that once you find someone who loves you, they might not love the challenges your relationship will face because of  your health. At first, the symptoms are manageable and don’t seem that bad, the therapies don’t really interfere with your relationship—no biggie really.

Yeah, you’re not normal, not fully healthy, but it’s manageable. At some point though, the reality sinks in: this thing is going to be around for awhile, it will impact your relationship and there are no guarantees.

Then the bomb hits. You think you have someone who loves you for you, illness and all. You have to live with this, and they don’t. There’s the dilemna-do they stay or do they go? Do they face your illness’s challenges with you or not?

No one can fully understand what you suffer with everyday, your trials and tribulations. How you can be perfectly fine one day and in agonizing pain the next day? Especially when you have fibro, where others can’t “see” your pain.

How do you make them see what you are going through? Or how do you learn to set them free of your pain? I fear that I will never be strong enough to answer those two questions.

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

%d bloggers like this: