Monday, July 30, 2012


If beauty is in the eye of the beholder,
then pain perception is in the eyes of its victim.

Sometimes I wonder if the people who research chronic pain and Fibromyalgia have ever been in chronic pain. I love reading articles by Ph.D's that feel if chronic pain sufferers would stop thinking about their pain, then they might not experience as much of it.

It's called pain catastrophizing.
It means just what it sounds like and what it implies is also just what it sounds like.
And I don't buy any of it.

I've been through painful situations in my life. When I was four I fell face first into a glass bowl full of potato chips. No, I wasn't the most graceful kid. When they threatened to take me to the hospital I dug in my heels and said "no."  Evidently, the doctor thought he would be cagey and tell me that he'd stitch me up right on the table. To hear my family tell it, I got right up on that table and didn't move a muscle. When he told me if I moved I'd have to go to the hospital I made good on that threat. The doctor stitched me up right there on the table. My brother told me that the only one in control that night was me.

I've always had a lot of control over my body. I learned when my brothers would tickle me until I cried that I could slow down my breathing and talk myself out of feeling what they were doing; I did it. To say that it infuriated them to no end is an understatement but it will give you an idea of what I would do when something felt unpleasant.

To tell me that the pain that I'm experiencing is amplified by the way I feel about it is absurd. If I could think my way out of this pain I would have done so years ago. I know how to distract myself enough so that pain doesn't have to take over. I've done it.

It works for acute pain.
It doesn't work at all for chronic pain.

Maybe it's because so much stimuli causes pain. We have the weather, auditory, hot and cold and noise being some of the issues that can trigger flares. Maybe it's because they still deep down don't believe that a lot of this is in our heads. After all, how much else can go wrong?

I'm back to central sensitization. People with Fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to it's pain signals. It's not what happens, it seems to be how it happens. Why they're stuck on cognitive behavioral therapy and trying to blame pain amplification on "catastrophizing" is beyond me. It's almost as if they can't find the on/off switch in our brains so they don't bother.  I really want one of these guys to experience chronic pain and then tell me that if we think good thoughts it will get better.

I've always said that attitude helps us get through very tough and painful times. It helps for a lot of things but it doesn't take away the pain. It is purely a coping strategy. That's all it is. There are affective dysfunctions, central nervous system abnormalities and cognitive dysfunctions. 

Even after all the research the treatments for Fibromyalgia include: Reduce stress, get sleep, exercise and maintain a healthy lifestyle. Boy, I can't tell you how much that advice helps me. Isn't that what we should be doing in the first place? 

It seems to me that the blood flow to the part of the brain that deals with pain and the cognitive function is off. There has to be a reason that they can't find out why the pain is amplified so much.

I'm in ponder mode.

I might as well be.

It's humid and the thunderstorms are coming.

That's not a good sign.

I better think and write while I can.

Catastrophizing my a**.

Sunday, July 22, 2012


Can it be that simple?
What if it works?

Even though research has shown that Fibromyalgia does not have inflammation as a marker, is it possible that it does? 

New research is pointing to inflammation and has shown that cytokine levels are excessively high in patients that have had Fibromyalgia for over two years. Now, it hasn't been determined whether this in itself is a cause or if it's secondary to the condition. Research has also shown that chronic inflammation and an altered immune system may be a cause of Fibromyalgia. 

I read an article that Dr. Dennis Ang, a rheumatologist, had a hunch. People with Fibromyalgia have an increased number of mast cells. Mast cells have been shown to be implicated in inflammatory diseases when activated by non-allergic triggers. 

Dr. Ang's hypothesis is that if you quiet these mast cells, which usually are allergy related, then you might be able to control the pain. The drug he's using is Ketoifen. This drug is sold worldwide but in the United States it is only available in an eye drop.

Dr. Ang is conducting trials right now. I'll include the link to the article at the bottom of this post.

Could it be that simple?

We're just a sneeze away from being pain free?

This bears watching. 

Thursday, July 12, 2012


It's been a month of living extreme heat.
Just when I thought it couldn't get worse,
the monsoon season set in.

It has been a few weeks where the temperature index ranges somewhere between OMG and WTF. Yes, it has been that hot. I wanted a fountain diet coke and the thermometer in the car read 119.  People with Fibromyalgia have an intolerance to either heat or cold. Mine just happens to be heat and I live in the middle of the desert.

Go figure. 

Chronic pain is really a reality all unto itself. Even the simplest of tasks tend not to be simple anymore. Any decisions that are to be made tend to be made from the chronic pain vantage point. We can't make any concrete plans because they may have to be changed due to the levels of pain that we might be experiencing on any given day. 

When the body and the brain talk to each other neurotransmitters are used to communicate. Every little transmitter is balanced by another so we don't look so good on that front. Just another lovely little item that is out of balance with our lovely little syndrome. For instance, when you touch a trigger or tender point on a healthy person they might not have much of a response. Now try that on someone who has Fibromyalgia. I can just see anyone who has it either nodding or smiling because they know just what is going to happen.

Anyway, back to the humidity. I've realized that I have a talent. Did you know that I can feel every little minute rise in barometric pressure? With every little move up the pain steadily gets worse. Plus, the noise from the fourth of July really got to me. 

Surely, I jest.

Well, let's look at the sudden rise in temperature. We went from about 101 degrees to 117. That in itself is enough to cause one hell of a flare. 

Strike One.

Once we got through with that there is a rise in barometric pressure due to the storm front moving in. 

Strike Two.

So the wind is picking up, the humidity is rising and there could be, "a stray thunderstorm" tomorrow and through the weekend.

Strike Three.

So, as I go down for the count I want to introduce a new symptom.

I call it the Eighteen Wheeler Manifestation.

In other words,

Hit again by the proverbial Mack Truck.

I've been hit so much lately I don't even bother to look for the license plate number.

Wednesday, July 4, 2012


It's the fourth of July.
I love the fireworks.
But they hurt.

It's amazing how extensive the changes are to my body and I keep finding new changes all the time. Take, for example, the fourth of July. I love watching fireworks. 

Or at least I used to.

I heard some last night and it actually hurt my ears. How ridiculous is that? Whether I like it or not, that  too has changed. Now even the littlest bit of sound hurts my ears. Well, not exactly every loud sound. 

I can turn my iPhone music up loud in my headphones. That doesn't seem to bother me. It seems if I like the sound it's OK. Why is that? It's the same with smells also. I love the smell of lavender and vanilla. Bath and body has one called "sleep" that I spray on my pillows and it's yummy. Something unpleasant, however, just seems to set me off. Does this fall under the category of "I'm OK and maybe you're not OK?"

Nope, it falls under generalized hyper vigilance.

Basically, we have an amplification of external stimuli. Our bodies constantly remain on high alert. It can be loud sound, annoying repetitive sounds (like a car alarm) or it can just a mix of different sounds (like conversations at a restaurant) that can set us off. What is interesting is that sometimes it bothers us and sometimes it doesn't.

Just another lovely symptom that plays hide and seek.

Considering that our central nervous system overreacts to just about everything; why not this? Instead of our brain filtering out the unimportant stimuli it just reacts to everything that's incoming and is overwhelmed.

We're on sensory overload.

Here's a funny example. I'm usually pretty quiet in the morning and I don't like a lot of movement or conversation until I wake up (ask my daughter about that one..........). Taking dishes out of the dishwasher and hearing the clattering of the glasses and dishes will absolutely send me up a wall. 

Let's face it. Anything that the human body can be sensitive to......well, we're hyper sensitive to it. I've always been told that I had selective hearing. Oh, come on........don't we all? However, like I've always said......."when you have Fibromyalgia, all bets are off."

Let me get this straight.

My clothes hurt.

My weather hurts.

My body hurts.

My ears hurt.

My hands hurt.

My eyes hurt.

The heat hurts.

The cold hurts.

The humidity hurts.


Now the dishes hurt????????