Wednesday, March 20, 2013


All pain is tolerable
as long as its somebody else's.

Pain, even by definition, is subjective. "It is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage," or "an unpleasant sensation occurring in varying degrees of severity as a consequence of injury, disease or emotional disorder."

How can we adequately describe pain?

Well, we can try to describe it using medical jargon. Let's see....there is allodynia. That's pain  due to a stimulus that normally doesn't cause pain. I can't see going to the doctor and telling him my allodynia is off the charts.......

Hyperalgesia.....this is like turning up the volume on stimulus that does cause pain. Basically, pain in hyper drive.

Again, I can't see going to the doctor and using medical jargon. They may understand the meaning but they'd look at me like I was a wackadoo. My doctor would tell me to get my nose out of the medical books and just talk to him. My feeling, and this is just MY opinion, is that if we use too many medical terms the doctor may feel like we're looking for something to justify something that he will qualify as an imaginary illness.

Then there's the pain chart. The smiley faces and the words don't go together. If 10 is the worst possible pain then should I be standing there or should I be rolling around and screaming in pain? If that's the worst then is 8 that far behind and, if so, what does it mean? I think childbirth was a 10 but would that make the pain I experience every day a 5? I don't know how to go from a 5 to 10 and really make sense of what I feel. 

I've become pretty good at management but having said that am I sabotaging myself? I can take a lot of pain; I'm used to it, unfortunately. How do I accurately convey the level of pain? They don't know me so they have to take my word for it. Sometimes I underplay it because I don't want to be thought of as a baby. I also think there is a credibility issue, not just with me, but with anyone who has chronic pain. 

There are so many people that fake the pain so they can get medication. I was at the pain management doctor a couple of weeks ago and I was waiting for the nurse to bring the prescriptions and my appointment card. I could hear the doctor in the next room and he was telling the person that he wouldn't be refilling the medications that another doctor had given. Basically, they were doctor shopping.  The list was extensive and I was shocked that a doctor would prescribed sleeping pills, anti-anxiety medication and two STRONG pain pills. I would think you'd go to sleep and not wake up. If I asked for that I'd get locked does someone walk out with that kind of narcotic protocol? Of course, the voices were getting pretty loud and the patient was escorted off the premises. 

This is why we walk such a fine line. If we are in too much pain and mention it we run the risk of being denied medication because doctors are just plain afraid of liability. If we underplay the pain then they figure we don't need anything. If we say we need it for breakthrough pain they think we're recreational users. 

What will it take to get adequate multi-dimensional care? 

I have my own pain scale.

There's OW. There's OW squared. Then there's the pain I call voodoo pain. Remember in Indiana Jones and the Temple of Doom the pain that he had when the pins in the voodoo doll was more then he could bear?

That's the pain.....Voodoo.

It's the old joke.......

Does this hurt?


Then don't do it anymore.........

Saturday, March 16, 2013


moderate drinking eases Fibromyalgia.
Gee, ya think???
They needed a study for this??

I guess it's been shown that people that drink have less trouble with the symptoms of Fibromyalgia and a better quality of life. Now, I'm not Einstein but I don't think you have to be a Mensa candidate to figure this one out.

Moderate drinking is categorized as more than three but less than seven drinks a week. Okay, so if I knock down a few after dinner I guess I'll be able to handle the pain in a more ladylike fashion. Here's the trouble......

I have NO tolerance for alcohol.

If I have a drink or a glass of wine I have been known to start drunk dialing. I just can't tolerate alcohol. This started after I had my daughter. In college my girlfriend and I used to win shot contests and still be standing straight. Something happened to my body after I had Danielle. I get buzzed really, really fast. 

It doesn't help that I really don't like the taste of liquor. I have to hide it in fru-fru drinks like Mudslides or Pina Coladas or, if I was back in the old college days, Everclear 151 and fruit punch. If I can't taste it and the rest of the drink tastes good I'm in trouble. I forget the stuff is in there.

So, back to the study.
Who wastes time with this??

Of course, if you're half lit you're going to be able to tolerate the pain that bombards our bodies. It's interesting that some of the patients reported that they also cannot tolerate alcohol so that is why they abstain. Also, there are medications that absolutely should NOT be taken while drinking. 

If you're in a lot of pain and take opioids, you should DEFINITELY NOT resort to moderate drinking to relieve symptoms. People with Fibromyalgia have low GABA levels (gamma-aminobutyric acid). GABA slows down the activity of the nerve cells in the brain. Alcohol increases the action of the GABA receptor. This may be a reason that the pain volume is turned way up in people with Fibromyalgia. Low GABA, high pain, huh?

Like I said.....if you're half lit......who cares??

Of the 946 people who participated in the study it was founds that they had lower BMI (I guess if you drink you don't eat) lower unemployment and higher education. (You can tell that from a margarita? 

There is a caveat from the study......

They urged people not to start drinking to relieve pain.

They couldn't figure out why the alcohol helped with the pain.

They actually studied this???

I have to stop writing....

my margarita is waiting for me.

After one of them I won't even be able to spell margarita.

Update: Too much reverses the effect!

Here's the've got to read it.......Moderate drinking may ease symptoms.

Monday, March 11, 2013


Has it finally arrived?
Is there really a test?
We shall see.

We've waited and waited for research to come up with something that will give Fibromyalgia the legitimacy we crave. No more doctors looking at us with disdain or patting us on the head telling us to take a couple of pills and call them in the morning. Having this "syndrome" has cemented what we've learned through life experience.

Dismissal and rejection hurts.

So, now the University of Illinois College of Medicine at Chicago and EpicGenetics has revealed a test that will diagnose Fibromyalgia. Other research has shown for quite some time that pro-inflammatory cytokines are elevated in patients with Fibromyalgia. They have tried to eliminate BMI and response to exercise as a stressor for the  increased elevation as well as dismissing a cytokine connection in its entirety because that tends to lead to an impaired immune system and a connection to autoimmune diseases.

Back to the test, however.....

The test identifies specific biomarkers and is stated to be 93% sensitive. Currently, insurance does not cover the test and it's only being done through EpicGenetic. The cost is also $744.  Patients are required to fill out a questionnaire for qualification and it can be arranged through their doctor.

Are they saying that Fibromyalgia is genetic? Are we predisposed to this and then a stressor sets it off?

Also, cytokine elevation can occur with other autoimmune illnesses. Sleep deprivation can induce elevated levels as well. Given the fact that Fibromyalgia has so many other symptoms and overlays of other illnesses, can this accurately diagnose Fibromyalgia or just the fact that cytokines are elevated could we be dealing with more than one pain condition? 

The APA Assay test has been around for awhile. This test measures the IgG anti-polymer antibodies in human serum.  Published studies have shown that different levels of these antibodies show the severity of the symptoms in Fibromyalgia patients. Basically, this test seeks to confirm that Fibromyalgia is an immune disorder because a positive result means that your immune system is producing these antibodies. 

There are a lot of tests out there but none specific for Fibromyalgia, until this one. I think it has promise but is there more research to be done so that it is truly specific to Fibromyalgia and not just a pain disorder? I need to do more research on this test. It's very interesting. The very fact that most of us have to go through doctor after doctor, year after year to finally get a diagnosis this test could be a real step forward saving us money and heartache.

I'm hoping it isn't one more thing that I'll spend money on.

Right down the drain.

All those on board take one step forward.

Not so fast.

Thursday, March 7, 2013


 We know we have pain.
We know others have pain.
How do we really feel?

I was reading a study about the effects of looking at others in pain when you have a chronic pain condition like Fibromyalgia.

It was fascinating.

It wasn't a real involved study but it showed a side that we don't want to acknowledge. Maybe "side" isn't the right's more of a fear. When I starting thinking about it I have to say that I've done this.

So, what was this study?

The researchers wanted to see if people with Fibromyalgia had an abnormal neural response while observing pain in others. Yep, you guessed it. There was an abnormal response. It seems  that the Fibromyalgia brain showed a smaller neural response. 

What does this all mean?

We empathize with other peoples pain but we also fear it. That smaller neural response may very well be a shield. Smaller response may be our way of not catching someone else's pain. I know that sounds silly when you first hear it, but think about it. Is it possible in the hidden pathway of our brain there is a place where we steel ourselves against our pain when we see it in others? 

Can we be empathetic and yet keep that wall in place against feeling more pain? Or, are we afraid that we're too empathetic and those mirror-neurons will kick in and we will literally feel their pain?

Either way,

we have some weird goings on in the old brain.

I've been saying it.

They can say it's all in our heads....

They are exactly right.