Thursday, September 29, 2011


What causes Fibromyalgia?
Pick a card.
Any card.

It seems that everyone has an opinion on what causes Fibromyalgia. It's almost as if they want to pin it on anything and everything but a neurological malfunction. Heaven forbid there would actually be something wrong with us.  Some of the opinions are, in my mind, just absurd. 

Let's reduce it to the ridiculous.

Obesity as the reason for Fibromyalgia just cracks me up. First of all, if any sort of movement causes pain and your energy levels are in the toilet, it just makes sense that you would probably add a few pounds because of the inactivity. People that have Fibromyalgia remember the days with longing when they could run around and not get beat up. Most people would love to be able to exercise without feeling like they got hit by a truck afterward. Now, to add to this ridiculous theory, let's add the medications that are sometimes prescribed. The first one that comes to mind is the one that is touted by my favorite commercial of all time as the little magic pill that will give you your life back. 


Even on the commercial one of the first things they happen to mention as a little, tiny, minor side effect is weight gain. Now, I'm not one to tell someone what they need to take to manage their pain but, as for me, hell will freeze over before I take something that will make me gain weight. Yes, I have food and perfection issues but that's another story altogether. Even some of the antidepressants and nerve pain medications also have weight gain as a side effect. I'm not saying that weight gain won't exacerbate the symptoms or that it's a healthy lifestyle. We've all been there and have struggles with different issues but what Mensa candidate came up with this as the cause of Fibromyalgia?


Then there's the vitamin deficiency theory. I rather like this one. It is just one step away from the it's-all-in-your-head theory. Just pop a ton of vitamins and voila! Your symptoms will magically disappear! Right after that there's the dietary theories. If we stop eating, get ready for this, eggs, peas, dairy, whey, bean sprouts, beans, broccoli, cauliflower, lentils, bok choy, cabbage, kale, asparagus, leeks, rutabagas, onions, garlic, shallots, papaya, dried fruits, coffee, bananas, avocados, honeydew melons, tomatoes, potatoes, peppers, meat, poultry and fish, we will be cured. It's true. As I looked up dietary restrictions this is the list of foods I found. Basically, when you put all the recommendations together, there's nothing left to eat.

Needless to say, no one can agree on dietary recommendations either.

I think that making adjustments to our diets is healthy but will it cure us? I don't think so. I'm not a doctor but none of this stuff makes any sense to me. If it was that simple it would have been done and over with already. We'd all be going back to our lives that we had before havoc struck.  I am of the persuasion that my Fibromyalgia was the result of the trauma from a car accident. I've said it before but most of us can pinpoint exactly what happened that caused our lives to be on the roller coaster. I firmly believe Fibromyalgia is caused by some sort of trauma to the body or there is a genetic predisposition. It can be physical or emotional trauma and by emotional I don't mean you just had a bad day. I'm sure these theorists have gone over that one too. That's the you're-just-depressed-take-a-pill-and-go-home-theory. Don't you just really love that one? Thank goodness there's credible research being done but I just love it when the media posts articles making it seem like we're a bunch of looney tunes.

Oops.......I forgot to mention................

Did you know that there's a secret cure for Fibromyalgia?

The government doesn't want you to know.................


Sunday, September 25, 2011


You'd think I'd learn.
I'm going to keep my mouth shut.

When I started feeling like I was strong and then started spouting off about it as well, I set myself up for the Fibromyalgia to make me eat my words. It kind of falls under the category of never say never.

I wasn't disappointed.

Just when I thought that I found a place that the pain couldn't touch, well, it found its way in. It took everything I could do to continue to walk. Not only did it take every bit of concentration and a discipline I didn't know I possessed to continue but I had to wrap my ankles and feet in ace bandages. Everything felt weak and I ended up stopping every five minutes to give myself a break. 

I didn't want to write anything either.

Have you ever had so much that you wanted to say but couldn't find the words? I kept reading some of the comments that I'd gotten from the prior post. Needless to say, I was so unbelievably touched by them. If there's anything that's powerful it has to be the support of the wonderful women that respond to the posts on this blog. Whenever one of us feels like giving up or loses the will to fight, these women are right by your side to extend their hand to pull you back up. When one of us has a triumph or accomplishment they are also there to applaud.

There's power in people and friendship.

So I'm back to looking for that special place where personal power supersedes the pain. I think I've got the discipline down but what I haven't figured out is the hiding. I've got quite a few emails that I've ignored. I just don't have it in me to explain. I feels like it's just too much to put on anyone else. I know that it's just me; I'm very sure others don't feel that way but in hiding I can reclaim my balance and when it's there I will be ready to face the world again.

Why is that?

There is still a small amount of hope as I write this. I need to get out but at least I'm still continuing to move. I'm hoping the weather will break and the fall weather will set in. I do pretty well in the fall and winter. I know that the cold weather really bothers some people with Fibromyalgia but I seem to thrive in it. It's the heat and humidity that does me in......make that heat and/or humidity. Any combination messes me up. Even when the weather is good I still wake up feeling like the Tin Man who hasn't gotten a shot from the oil can.

Creaky joints and aching muscles: such and attractive package, isn't it?

I just think it's so funny (well, not funny) that when I start feeling a little strong, I have to go and open my mouth and announce it. I should have waited and reevaluated myself after a few weeks. This way I wouldn't feel as stupid. It's like praying and asking God for patience. You just don't do that because you've set yourself up for a real doozy of a test.

So it's not as bad as it could be.

It's not as bad as it has been.

But it's still not what it should be.

I don't think I should start singing "Eye of the Tiger" just yet.

Saturday, September 17, 2011


Another year.
We're still invisible.
How can that be?

We're still smiling through the tears. When people ask how we are we still say, "fine." We still get irritated at the Lyrica commercial and we still are disbelieved by doctors. We hesitate to talk about the tons of symptoms that pick and choose which day they will decide to appear. 

We even doubt ourselves and each other at times.

No matter what I still hate feeling out of control in my own skin. I hate waking up in pain and I hate to go to bed in pain. What I hate even more is appearing weak. I hate the fact that I have to say that I have Fibromyalgia. When people ask what it is, I hate telling them. I hate having to explain what the pain has done to my life.

We now have limitations and before there were none. We now look at life in a totally different way. Even when the pain levels subside there is a place within us that knows it's only a matter of time before it will rear its ugly head again. The pain and fatigue makes you retreat and the feeling of uselessness comes over you like a wave crashing on the shore.

Can we ever be the same again?
Yes and no.

I am just coming out of a place where the pain was strong and intense. It threatened to place me back in the black hole; a place I don't ever want to be again. I escaped the dark but it was close.

What was different this time?

Right now I'm in a place that I haven't been in many years. I'm feeling strong; definitely not physically strong but mentally strong. I'm feeling a strength of purpose and it keeps me from going down in depression. I'm walking every day and it's helped more than I can say. It takes oxycodone to do it but whatever it takes is what I'll do. I wake up in the morning in pain...that hasn't changed but I have realized that the pain isn't going to go away so I need something to overcome it. Let me make this clear. I don't believe that the walking will overcome the pain but what it does is overcome what the pain can do to me.

I'm not going to stand on a soapbox and say this is the avenue for everyone. What I will say is that there's a place in all of us where we can go and be strong. I know this because we have the strength to endure the kind of pain that we do on a daily basis. We all have a very high pain threshold and people don't understand that.

But we do.

So what I'll say is that I pray for all of us to look deep inside and find that place where pain cannot touch us.

It's there.

I know it.

Tuesday, September 13, 2011


What an ordeal.
It's still humid.
I still hurt.

I think I see the light at the end of the tunnel. I just can't even believe how bad and intense the pain has been this time around. This reminds me of when I first got diagnosed with Fibromyalgia. The pain blew past voodoo and settled firmly into OMG-MAKE IT STOP!

The pain was staggering.

I've spent the last few days between muscle relaxers and pain medication. I've continued to walk even though it's taken oxycodone to do it. I became reclusive and silent again, simply because the pain took precedence.

Lately it has hurt to move, it hurts to get out of bed, it hurts to put your feet on the floor, it hurts to stand up, it hurts to sit down, it hurts to lie down, it hurts to walk, it hurts to type, it hurts to move your hands and it even hurts to think.

So now what to do?

It's still humid and the pain level has come down slightly. It was at 9 and right about now I'd say it's about a 7 and a half. I never thought I'd be grateful for the pain level but I am grateful for every little tick downward. 

There are more thunderstorms forecast so I'm on high alert. The humidity is notorious for wreaking havoc on my system and it's hovering around 70%. The storms have been very strong and there could be more of the same for tonight.

You know what they say.

When you can see the light at the end of the tunnel....

It's probably the train coming at you.............

Full speed.

Saturday, September 10, 2011


I thought I had it all figured out.
Now, I have to keep asking myself.
Just who am I again?

When the voodoo pain hits all progress that I've made seems to go right out the window. I start doubting myself and my ability to cope with the pain. I crawl right back into the lovely little shell that insulates me from probing questions and comments as to just how bad I'm feeling at that particular moment. I hate answering the questions and when I do make some sort of half-baked comment, I feel like I'm whining.

No sniveling allowed.

I had that sign in my office. I always hated people that came in and you just knew that it was going to be a disaster. I put the sign up (before management made me take it down) to head them off at the pass.

It didn't work for them and it's not working for me.
I'm sniveling.
Or, at least it feels like it.

So, it's back to the same old crap. Why are their such peaks and valleys or is it just me? I was just beginning to feel like my old Type A self and then I got slammed. It's probably because I had a lot to do this week. Then I got an inflamed gum and so it will be a call to the dentist as well.

Geez, let's just pull out that old tiara again!

It's been a real long time since I've had the kind of pain I'm experiencing today. I've started sucking down the pain medication because I just can't fight it. Plus, it's raining so the humidity is off the charts. 

Let's add this up.
Trip to the dentist.

All this adds up to voodoo pain.

Today, I am going to put the covers over my head.

And I can't find anything to say that will make it all better.

Even poor, sweet baby won't work.

Tuesday, September 6, 2011


I've been feeling a little better.
Then somebody pulled the plug.

It's true. I had a pretty bad summer and I've been dreading the monsoon season. Funnily enough, I began to feel better. 

Then the bottom dropped out.

I went to dinner and pressed one of the trigger points near my shoulder. I nearly came up out of my seat. What possessed me to do that, I'll never know. I then proceeded, just in case I didn't catch it the first time, to do it again. I figured I would be in big trouble today.

And I was.

I slept well, which was unusual, but when I got up every muscle, every bone and every joint was screaming in unison. I tried everything I knew to get moving but no go. Screw it, I took the pain medication and headed off to the gym. I am committed to it and I'm going to see it through. They say exercise helps with the pain.

They lie.

Exercise has not helped the pain. The pain is there no matter what I do. Now, the level of pain is a different story. Today, as I was walking I wanted to cry. Today everything was on overload and today, I had a lot to do.

I bought a barbecue at Costco and it doesn't work so it has to go back. Then I bought a replacement at Walmart and needed a truck to pick it up. That needed to be done. I needed my hair done. All of this on a day that my body was telling me to just go back to bed and put the covers over my head.

I couldn't do it.

So tonight, I'm slithering into a bath and crying because I overdid it.

By a long shot.

No one pulled the plug.

I did it to myself.

Friday, September 2, 2011


Just when it got interesting.
Let's throw stem cells into the mix.

I'd read in passing about using stem cells to cure Fibromyalgia, but I passed it off as voodoo magic. Now, it seems to have surfaced again. I wanted to see if anything new has come up but, not really. 

Same old stuff just different day.

What is the same is the response that we all have to something that will allow us to get our lives back. Mine is, "I'd wash my face in sewer water if I thought it would help!" All of the responses were along those lines. We would do anything to get rid of the pain..........


The problem with stem cells, in my opinion, is that it's too new. As far as Fibromyalgia goes there is still a ton of debate on what the actual mechanism is that flips the switch on this condition. Some of the stem cell clinics I looked at lumps Fibromyalgia in with autoimmune disorders like RA or Lupus. Some Fibromyalgia sufferers may have autoimmune issues but Fibromyalgia itself is not an autoimmune disease.

The problem I have with a couple of the clinics is that it gives a false sense of hope. Again, this is just my opinion, but there is a reason it isn't allowed in the U.S. It's also very, very expensive. Upwards of 30 grand a treatment! Also, how do we know that it won't cause something that is more debilitating than the Fibromyalgia itself?

To me it's risky business.

I would love to try a lot of things but I am fearful of snake oil cures. There are alternative forms of treatment that I will try but playing around with stem cells or altering brain pathways isn't my first choice. Right now, we are able to somewhat manage the myriad of symptoms that plague us. Until something is proven not to be harmful, I'd just as soon pass on it.

I guess it comes down to our choices. We need to listen to our bodies and do what is helpful to us, both mentally and physically. What works for one person may not work for another and we should be sensitive to that. 

I think something that will work for all of us is to find something that we can smile about in these messed up circumstances. I'm not saying a positive attitude will take away the pain but it can help us deal with it a little bit better.

 I think we need to choose what we can deal with and what we can't.

They're called deal breakers.

And we need to listen to ourselves about them.

And if Tom Cruise wants to slide across my living room playing air guitar...........

Well, that's OK too...................