Sunday, November 25, 2012


Give me a F.
Give me an .....
Oh, what the heck does it spell?

is for the Fatigue that loves to hound my body when I've pushed it too far. It's always present in the morning because I never Feel rested. "F" is also for the Fun I used to have burning the candle at both ends. "F" is also for the Fog that is around whenever I can't remember the reason I walked into the room in the first place. "F" is also for the Frustration that I seem to feel every time I talk to a doctor about Fibromyalgia and they just don't seem to get it.

is for the Irritability I feel when I just constantly feel Icky. "I" is also for the state of Invisibility which is where I live when people and doctors look at you with pure disdain when you say you've been diagnosed with Fibromyalgia. 'I" is also for the use of Imagination when dealing with doctors and trying to get the medications needed to manage this illness. 

is for the Bad days that seem to rear their ugly head just when you thought you were beginning to feel good. It's for feeling Bummed when another flare comes right after the one that left a few days ago. "B" is also for feeling Betrayed and Beaten down by your own body and feeling Baffled when another symptom pops up. 

is for the Ridiculous way that some in the medical community refer to this illness.  It is for the way that most of us have to Re-invent ourselves due to the chaos that Fibromyalgia brings to our lives. It is also for the Realization that there is no cure and this is a life sentence. It is also for the Reminders that you have to leave yourself because you cannot Remember anything. 

is for the Optimism that we cling to especially when pain spirals Out-of-control. It is also for people who are Obtuse and think that pain is a constant in your life by choice and not design. It is also for those Outstanding friends and family to come to your aid and love you no matter what. It's for feeling Obligated to keep going even though every bone in our bodies are crying for us to stop.

is for Medical appointments and having doctors on speed dial. It is for the MRI'S and all the other tests you'll go through until you finally get a diagnosis of Fibromyalgia. It's also for the Money that will fly out the window because all these tests and doctor appointments are very expensive. It's also for the Memory that will also fly out the window and you will be left wondering where your intelligence went. It's also for the Management skills you'll have trying to keep the Myriad of symptoms in check. 

is for the acceptance and Yielding to the fact that Fibromyalgia is here to stay. It is for feeling Yucky. It's also for the constant Yawning because of the fatigue. It's for the realization that this isn't a day or month thing, this is a Years thing. It's Yearning for a day without pain.

is for the Absence of testing that can lead to a real diagnosis. It is also for the ability to Alleviate some of the severity of the symptoms with medication. It is for standing strong and Adamant that this is real and not in our imagination. It's for feeling Alienated.

is for feeling Limited. It is for feeling Left-out when we have to miss events because of fatigue or pain. It's for feeling Lousy or Lifeless when we lay in bed all day. It's telling ourselves that we are Lazy, Lumpy and Lifeless when a flare comes along and knocks us off our feet.

is for feeling like some of the seven dwarfs especially Grouchy, Gloomy and Grumpy. Yes, I did take license on some of those names! It's for feeling Grateful for the good days that we do have and it's for feeling Guilty when I do take the time to let my body recover in bed. It is also for Grieving for the life that I used to have.

is for the Irritation that I feel when people say that if I'd just move around I'd feel better. Don't they think I'd do that if it worked? It's for feeling Isolated. It's for the Invisible disease because you don't look sick. It's also for the Impatience I have with myself.

is for looking at the bright side because it could Always be worse. It's for being Aggravated and Agitated with ourselves and others. It's for being Absent-minded. It's for the Accusations that we're neurotic when pain and fatigue take over. It's also for being Appreciative friends and family.

I'm sure there are more words......

I can tell you what the F stands for....

But I can't write it on my blog.......

Ha....I know it stands for Fricking Fibromyalgia!!

What does it mean to you?

Sunday, November 18, 2012


What is it about the sound of the name?
 Even hearing it whispered makes you feel good.

It releases neurotransmitters. We can take it quite literally when we hear that we have "chocolate on the brain."

So, what does it do?

Let's start with endorphins. These little babies are natural pain and stress fighters.  It seems that eating chocolate releases endorphins. far so good. 

Serotonin. It seems that chocolate (semi-sweet or dark) releases and increases levels of serotonin. This is a neurotransmitter that works to regulate mood, sleep arousal and pain. Hmmm....again....the higher the serotonin level the happier we are. I can tell you that I'm VERY happy when eating chocolate. The downside? Can't drink milk with our little pieces of chocolate, or as I prefer, enveloped in a nice cookie. OK...I can live with that.

Phenylethylamine. Commonly known as PEA. It's a chemical that makes you feel happy. OK..I'm with them on that. It seems that chocolate is loaded with it. It also has a half life of 5 to 10 minutes so it stands to reason that we should shove as much as possible as quickly as possible!! It's also called the love drug because we experience the same feeling.....

Anandamide. It is a lipid that it very similar to THC. THC is a chemical found in marijuana. Anandamide and THC both activate the same receptor that gives us a feeling of well being. Didn't we feel like that in college?? Anyway, I feel very happy with chocolate.

One thing about chocolate. 

It contains a chemical called theombrine. While it is mildly diuretic and similar to caffeine, IT IS TOXIC AND POTENTIALLY FATAL TO DOGS. Their heart and central nervous system can be compromised. They don't metabolize it as quickly as their humans.

So, other than that, it sounds pretty good to me. Plus, it melts in your mouth, not in your hands. Actually, when I eat chocolate I feel comforted and loved. Amazing, isn't it? The power of a little morsel of yum.

When you're always in pain a little chocolate sounds like a plan.

Years ago, a friend of mine got me a little bear that I called "Sid."

Sid said one phrase......

"I LOVE chocolate."

He knew me well.

Wednesday, November 7, 2012


A beautiful and graceful tribute to the belly dance.
This wouldn't be me.

Is there anything else they can find that will help Fibromyalgia? Now, belly dancing will help us??  First, let me say that the thought of me belly dancing sends me into fits of hysterics. Let's just say learning dance steps isn't my forte and grace isn't my middle name.

Heaven help me.
I guess a study in Brazil put women in dance groups and belly dancers were helped. 

When our muscles are immobile, let's say like after a night's sleep (what is that?) they are stiff and sore. After that,  ANY movement will help reduce the pain. The more immobile the muscles are the more they will hurt. 

It's kind of like the Tin Man and the oil can.

I've always said that exercise doesn't help my pain. I think I need to rephrase that. It helps but it doesn't take it away. The pain ALWAYS comes back. The movement does help my muscles move and it helps the muscle spasms, but,  it doesn't "cure what ails me."

I don't think we need more management help. 
We need causal and curative help.

That's why Tai Chi, yoga, Pilate's or, yes, even belly dancing helps with pain. It's a slow, rhythmic movement of the muscles. We all get that. I don't know anyone with Fibromyalgia who can't recite a litany of things that help them with pain. We've gone through tons of trial and error to find ANYTHING that will get us through another day. 

People can only take so much pain. We are tired of happy, smiling faces telling us that if we just take this magic pill or do this lovely little exercise all of our problems will be solved. No wonder we get to the point where we'd like to scratch that smile off of their face. You're probably just depressed. GEE, YA THINK?????? What is it about chronic pain? Don't they get it? Do they think it's just wincing slightly and rubbing a little shoulder muscle and then we can keep our mouths shut and go on about our day? Or how about sitting us in a rocking chair and keep us drugged enough to shut us up?

We smile through the pain enough. We are the masters of invisibility. We HATE the fact that this lovely thing called Fibromyalgia has the power to render us immobile. Living like this isn't our first choice.

Why can't they find out?
Why can't we get past the stigma of this "imaginary" disease and find out what causes it?


We're back to belly dancing.

Trust me.

That's a visual you wouldn't want. 

Sunday, November 4, 2012


I've been saying it.
I've always been saying it.
Now, I'm not out on that limb alone.

I've always thought that painkillers get a bad rap. I will never deny that they're powerful and, in some cases, abused. I think that just goes with the territory.

I believe if your medical treatment involves opiates you must be responsible, vigilant and do so with the knowledge their capabilities and power. I've always said that if I thought I'd be out of pain by taking these, I'd be in a lot of trouble. They take the edge off of the unbearable pain but will not take it away. If I took enough to be out of pain I'd be a zombie. Now, a study has come out that states that these drugs may not be as addictive as once thought. 

Finally, a study that looks at addiction and physical dependence differently.

I know that when my pain doctor and I talked about opiates, I was concerned because of the addition of acetaminophen. That can cause liver damage if you use it long term. I asked about the oxycodone because it didn't have the addition of acetaminophen. He told me that I could be on that for years without the worry of damage. 

We talked about dependence.
I was worried about that.

He looked at my history and I'm a very low risk patient. I don't have a history of any alcohol or drug abuse and nothing in my emotional makeup that would indicate risk for addiction. I was told about the rules (sharing, doctor hopping, etc.) and signed my agreement. I've never asked for an increase or taken them in any other way than what I was prescribed.

I think it makes sense.
If you give a bottle of painkillers to a drug addict, chances are there will be problems.

I do think it's important for your doctor to know what and how much is needed. I also think that you've got to be open and honest and let him know how these medications affect you and if it's helping you deal with the pain. He did tell me that I shouldn't expect to be out of pain. 

That's something I've never forgotten.

That's why I firmly believe that Fibromyalgia has subgroups. For me, pain has always been the main issue. Pain without depression. The muscle spasms that I have are helped immensely by the tizanadine. The tizanadine helps normalize the amount of Substance P in the spinal fluid. Maybe that's why it will help people like me.....pain without depression. Maybe Cymbalta helps those with pain but with depression. There's still something that nags me about the reason that there is no medication that helps all people with Fibromyalgia.

There needs to be an inter-disciplinary approach to pain. You can't throw medication at patients. There needs to be a team that works with us. From doctors to our yoga instructors.

So it's back to square one.

But things are looking up in the medication department.

It can't come too soon.

Here's the link.