Thursday, December 18, 2014

Is fibromyalgia fake? 5 fibro myths debunked

You may have been led here to this page because you googled "Is fibromyalgia fake" looking to confirm that someone in your life is a lazy hypochondriac. Well unfortunately for you ( but fortunate for them) fibromyalgia is real. Now don't get me wrong, fibromyalgia is way way WAY over diagnosed which is unfortunate for those who really have it. Many people who have chronic pain issues end up getting thrown a fibro diagnosis because their doctor is too lazy to figure out what is really wrong. At the end of the day though, you're here because you are someone else in your life is experiencing pain and illness and fibromyalgia is a real diagnosis. So with that said, please read through all the links I have provided below debunking fibromyalgia myths.

1. All fibromyalgia patients are high on painkillers making them druggies of the worst sort. These drugs are just handed out by doctors like candy.

I have a lot to say about pain medication, just check my sidebar in the "pain" and "medicine," but I think quoting the experts might be the best option in this case. Below are just a couple articles about pain medication and how it's a lot harder to get than most people think. Patients with chronic pain often are under treated because of the ridiculous bureaucracy they have to deal with just to get treatment. For example, read this post over at "Oh my aches and pains" to discover what it is really like trying to get pain medicine.

Look at this transcript from NPR addressing how chronic pain is actually under treated and the difference between addiction and dependence. "Addiction is defined as a neurobiological condition where people use the drugs compulsively. They use them despite knowing they're doing harm. Physical dependence is different. If you go on opiods for even two or three weeks, you will become physically dependent. That's 100 percent guaranteed, but that's not the same as addiction. That is a state of adaptation that your body makes to the opioids. "

Please check this study where fibromyalgia has been linked to decreased brain activity. "The results showed that the fibromyalgia participants had significantly increased pain sensitivity compared with the control group."

Also please read this post about how women are regularly under treated for pain as compared to men (and women tend to have fibromyalgia in much greater numbers than men).

And finally, read here about the high suicide risk for people with chronic pain. Sounds like a picnic huh?

2. Fibromyalgia always results from some past trauma, be it physical or mental.

This can sometimes be true, but it is not always the case. Please see this information provided by the Mayo Clinic. Last I checked they were pretty reputable. "There's a lot that's unknown about fibromyalgia, but 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."

And that is just from one source. So no, just because you have fibromyalgia it doesn't mean you were abused as a child or were in 10 car accidents before the age of five. Fibromyalgia is complicated and we're still learning new things about it and Fibro patients do not fit in a narrow easily definable category.

3. It's easy to get disability benefits from fibromyalgia.

Read a first person account of how difficult and demeaning the disability process is here. Many patients have to wait years in order to get disability. They get turned down two or three times and in the meantime they are unable to work and are living on nothing. Even if they win eventually, they aren't generally living high on the disability hog. Sounds like a great arrangement to me!

Look at this article about how disability testing for fibromyalgia is often misleading and leads to inaccurate results and denial of benefits.

Read here about all the things that fibro patients have to take into account and figure out when they can no longer work.

4. Fibromyalgia sufferers are all type A personalities who wouldn't be sick if they weren't so controlling and OCD. 

Read The Brainless Blogger's response to that idea here she does a great job addressing the issue. I'll also add that I have never been nor will I ever be a Type A person. I'm a quintessential middle child who has always been easy going and laid back, and I'm not the only fibromite is who that way. This is a gross over generalization of fibro patients.

5. Fibromyalgia is another word for lazy

Read my post here about how awesome it is to have fibromyalgia. Despite what most people think it's actually not fun to be in pain all the time. It's also not fun to be forced into resting a lot resulting in you missing out on all the fun that other people are having. I don't know about you but I absolutely love staying home while everyone else gets to go out and do things! I love that every time I walk for any period of time I end up in horrible pain! It is so freakin fun, you should try it too! And if my sarcasm wasn't enough for you, check on an article here which includes a lot of information and medical links about fibromyalgia.

Book review- The Secret Of Pembrooke Park

This book is now my new favorite of Julie Klassen's. I've liked some of her books in the past but this is the best yet. She combines the elements of romance and mystery so well that this turned out to be a real page turner. Even better the mystery was very well done, I thought I had it all figured out and then it turned out I was completely wrong. There was some really clever writing involved in this novel.

I really found the main character Abby easy to relate to. Abby lives in the shadow of a beautiful and shallow sister so she struggles with the implications of this. Her practical nature is often taken advantage of by others- including her parents who don't seem to realize the problem with how they treat their daughter. Abby struggles with making amends for her mistakes and doing right by her family and makes large personal sacrifices to make up for these mistakes. Through thesed struggles it is easy for the reader to see themselves in her and to understand the actions that she takes.

Julie Klassen's "The Secret of Pembrooke Park" is my new favorite book in the genre of Regency Romance. Just make sure you pick it up when you have some free time, it's a page turner.

* I received a copy from Bethany House publishers in exchange for a fair review.

Tuesday, December 16, 2014

Dear healthy people- You have able bodied privilege

 <----- Blerg

Dear Healthy people,

"I'm a runner." Those are words that I dread hearing. Those are words that make me want to cry and hobble away as fast and as far as I can. When I first meet you and in the first conversation we have the words "I'm a runner" come out, I want cut off the relationship right there. You see, I am friends with runners. You are so into running that you post on facebook every time you start running and and when you finish and every detail of your amazing run. Every...single...time. Sometimes you even run twice in one day for an extra dose of awesome. You also like to talk about running in person, a lot. You usually don't have much else to talk about because your main focus is running for three hours a day. You constantly talk about your goals and how everyone can do it! You like to say if you don't try it's just because you're lazy, you should be a runner too! That's right, did you know if you just try hard enough you too can run a marathon?

Oh wait.

That's able bodied privilege.

If you can physically get out of bed in the morning, that's a privilege
If you can put on your socks and running shoes, that's a privilege.
If you can tie your running shoes, that's a privilege.
If you physically went to the store to buy your running shoes, that's a privilege.
If you can walk outside your front door, that's a privilege.
If you can walk, that's a privilege.
If you are physically capable of running, that's a privilege
If running makes you sore but not so much that you spend the next week in bed, that's a privilege.
If you don't collapse after a few seconds of running, that's a privilege.

That's right, it is a privilege to have a body that is capable of running. You may think that you in your awesomeness did this all through hard work, but the truth is it was a combination of hard work, genetics, and good luck. I won't ever run a marathon and yet I put just as much effort into training my body as you do. Instead of spending time carefully crafting my workout routine so I can get a better time, I'm finding ways to stretch out the newest part of my body that started hurting.  Instead of obsessing over my Fitbit I'm trying to do what I can to get through the day without pain medication. I can't be a runner, no matter how hard I try.

Don't mistake me, there is nothing wrong with being a runner. Running is a really great thing and I'm glad that you enjoy it so much. I even want to celebrate your successes with you. despite how much it may pain me.  I will be there every time at the end of the race to cheer you on, but please stop posting obnoxious inspirational memes about how "anybody can do it" or " only strong people run" or "non runners are only making excuses." Bullshit. Look around you and use your brain. Appreciate the body you have and take care of it through running or any other way, but remember that you aren't better than everyone else because you have a working pair of legs.

Monday, December 15, 2014

There is no chronic illness bootcamp

I'm pretty familiar with pain. I think I'm pretty tough, but my pain level has been so high lately it is kicking my tail. I haven't been able to blog because I'm crazy busy and when I'm not busy all I can think about it pain. Pain pain pain, my head keeps screaming. The pain is so bad all my normal pain coping techniques have gone out the window. And in the month of December I just don't have the time to take pain killers and bliss out (and it's not like pain killers help me that much anyway).

I'm really good at ignoring pain. If ignoring pain were a professional sport I would be in the Olympics. I function on a daily pain level that would put most people in bed whimpering, but this much pain is killing me. I've been flaking out on half the stuff I committed to lately. I very carefully planned out my schedule for December and even though it was busy I didn't over commit myself and left a decent amount of time for rest. My body clearly had different ideas. Now I'm flaking out of my commitments left and right. I'm relatively sure a lot of my friends are annoyed about how many events I've promised to come to and then cancelled at the last moment.

I wish I could explain what this pain feels like to other people. I wish they could take my pain just for one second so that they would have an idea of what I deal with. I know I'd get a lot more sympathy and a lot more help. The other day I was having as really hard time. I was hurting so badly and I was depressed because it's Christmas and I want to enjoy it instead of huddling at home being miserable. I was depressed because everyone is so busy and I should be too but my body won't let me. And then  I saw all the sympathy and offers for help a friend was getting on facebook for having the flu (this is why I avoid that hellhole, I don't know what convinced me to log on). I was angry and hurt and frustrated and I wanted to scream WHAT ABOUT ME! I DEAL WITH THIS EVERY FREAKING DAY AND I NEVER GET ANY SYMPATHY. NOBODY CARES ABOUT ME AT ALL YOU JUST GET ANNOYED WHEN I FLAKE OUT AND THEN YOU FORGET ABOUT ME.  I was not in a good place, clearly.

Yeah, pain makes me angry and selfish. Suddenly my better nature goes out the window and I lose all patience and thought for other people. I'm not proud of it, but being in constant pain is hard. Sometimes I gloss over what it is really like to have a chronic illness. I convince myself and others that it's okay and it's all sunshine and rainbows, but then I have a meltdown over a Facebook posts and it reminds me that this is hard. There is no chronic illness boot camp, this was just thrown in my lap and I had to learn how to deal with it on my own. Sometimes I do a good job at dealing with things and sometimes I mess up in a major way. Sometimes I am totally in control of my problems, other times I sink into the despair and pain and it's okay.  The important thing is I'm learning to forgive myself for these freak outs and each time I go through this cycle I learn something new.

Wednesday, December 10, 2014

A little humor

This month has just been absolutely crazy. It seems like I've been running non stop since Thanksgiving. My poor blog is being neglected a bit, my brain is too busy to even think about a blog post. Today I ran across this grumpy cat meme today and well, that just made life better. I may have too much love for grumpy cat. 

Friday, December 5, 2014

Feeling sorry for myself

The following is an excerpt from my thoughts yesterday: 

I'm so tired of being sick, I'm practically and invalid and I'm just not good at it. Hey, I'm like Beth from Little Women! Except for the cheerful, sweet, makes people love her part. And the death part. Last time I checked I was still alive. Plus Beth didn't lay in bed feeling angry, she made presents for little children and dropped them out her window. Hey, maybe I should make presents for children? Too bad I have no crafting skills whatsoever. Too bad my hands don't work. Too bad I don't like children. Wait, you have kids, you should like children what is wrong with you? Sigh. Why can't I be like Beth? Why can't I be the long suffering but happy sick person who makes others around her feel better? Crap, I'm just not very good at the invalid thing.

Note to self: When you start comparing yourself to Beth from Little Women you are wallowing a bit too much. You don't have to be Beth just because you have a chronic illness. Your personality is still like Jo but with the illness of Beth mixed in. Wait, those personalities aren't congruent, no wonder you're a crazy person. Okay, invalid or not you need to get out of the house. Go Christmas Shopping right now!

At Store in line for checkout:

Great, I got the presents I needed. I'm feeling better about this. Oh wait, I forgot my wallet at home. I was too busy thinking about Little Women to remember I took it out of my purse to look up a phone number. I knew I shouldn't have left the house today. Chronic illness has destroyed my brain, what made me think I think I could go Christmas shopping?

Back at home:

Flop on couch. I should just accept my fate and allow myself to be grumpy and wallow in misery. It's too much work to try to have an actual life. This sucks, I suck.

Checking email while lying on the couch:

Wow seven new emails from really sick people looking for answers. Wow these people have had to deal with a lot more than I have. They are just beginning their journey with chronic illness. I remember when I was just beginning it was so overwhelming and confusing. Now I'm just a seasoned pro. Huh, things used to be a lot worse then they are now. I am pretty functional when you think about it. I guess I'm not really an invalid anymore. Maybe things aren't so bad.

End Scene

Monday, December 1, 2014

"Living Well with Fibromyalgia" magazine

Check me out on page 4 of "Living Well with Fibromyalgia" magazine!
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