WOW! THERE'S A NEWSFLASH

Really?

I never would have thought.....

According to the National Institute of Health people in pain use more health resources than people who are not in pain.

Ya think?

Approximately 23 million people catagorized their pain as a level 3 or 4. For the basis of this survey a one was the least severe and least bothersome and the highest was a level for for the most severe and most persistent. It was interesting that women were the most likely to report pain.

So what does this do?

I don't think the sheer volume of people reporting severe pain was expected and maybe, just maybe, they will want to evaluate what can be done for chronic, severe pain patients. The research also wants to look at complementary procedures, such as yoga and massage, that may help pain as well. 

It's clear that shoving strong pain medication to patients isn't an answer. Neither is denying pain medication. It's clear that a different approach is needed. Personally, I think that finding out how a person processes medications is key. Everyone metabolizes medications differently so how can you know how a medication will affect your body unless you test for it?  Part of the problem is I think part of the problem is that most of these people live their lives in an educational bubble. 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.

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?

And I don't buy any of it.

So what to do?

I think they need to recognize the legitimacy of pain.

23 million people are not catastrophizing.

They are in pain.

And something needs to be done.

WHAT CAME FIRST, THE THYROID OR THE FIBRO?

Oh yay!

Another cure!!

Never mind the research.

Everyone else has been wrong.

It seems that everyone else has been misguided and the cure for Fibromyalgia has been right under our noses all this time.

It's your thyroid that causes the Fibromyalgia.

Sounds simple, huh?

I will agree that a lot of the symptoms sound the same but, at the same time, managing one does not automatically mean the cure of the other. The interesting part? The irrefutable evidence is currently on a website that is offline. 

Hmmmm.......

My doctor gets it. He knows there is a difference between normal and optimum. I don't feel well just being barely normal (OK, don't even go there!!!). I also need T3 and T4. I can't take levothyroxine alone, it just doesn't work for me. Getting my levels in check took some doing but now they seem to be where they need to be. 

I think it's interesting that that a lot of these symptoms are the same. I don't mean to sound flippant. There are a lot of issues with our body and the thyroid may just be one of them. The HPA axis dysfunction has long been a favorite theory of mine. I just think it's suspect when you take the same symptoms and point them to a simple fix.

Don't you think researchers have thought of this?

Maybe there is a problem with the thyroid due to low body temperature and basal metabolism that is common in Fibromyalgia patients, I don't know. Maybe some patients who were diagnosed with Fibromyalgia were actually severely hypothyroid. Maybe it is a problem but, right now, we just don't know. It's a shame that promising studies set themselves up for ridicule.

Why can't they just say, "another piece of the puzzle found."

Or, "study looks promising,

But, no......

Everyone else is stupid

And the cure was right under their noses.

So far, no one has been cured of Fibromyalgia,

But we can!!

(oops, the website with the proof is gone)

Is there any reason this shouldn't be suspect?

The thyroid science study link

ONE MORE PIECE OF THE PUZZLE

Flexeril.

Who knew?

Tonix Pharmaceuticals is starting Phase 2 clinical trials for their form of a very low dose cyclobenzaprine called TNX102 SL. It targets pain and the inability to get restoration from sleep...well, because we don't. You can't get something from something you don't do. It seems that the sublingual form is rapidly absorbed by the bloodstream and is rapidly excreted from the system.

Sounds like a win-win.

This study has approximately 120 patients taking either a tab or placebo at bedtime for twelve weeks and then measuring the change in pain intensity. The first phase of the trial has already been concluded with a reduction of pain, pain sensitivity, fatigue and mood. The study chair for this trial is Dr. Daniel Clauw, Professor of Anesthesiology, Medicine and Psychiatry and Director of the Chronic Pain and Fatigue Research Center at the University of Michigan. 

Tonix calls this protocol BESTFIT. BESTFIT stands for BEdtime, Sublingual, Tnx102sl, as Fibromyalgia, Intervention Therapy. Cute, huh? 

Cyclobenzaprine is an FDA approved drug that treats muscle spasms that is associated with musculoskelatal conditions. It's been prescribed off label as a sleep aid. What I didn't know is that there isn't any benefit with this drug after two to three weeks. Actually, what is said was "the evidence of effectiveness for prolonged use is not available." Everything I've read says that this drug should not be used long term.

??????

Pain managers have been giving it out and for much longer than two to three weeks. 

There are not many treatment plans for us out there. The ones that are there have some side effects that make the treatment worse than the affliction! Add to the mix that the treatments don't work for all of us. 

This study is being conducted at approximately 15 sites throughout the U.S. I can't wait to see the outcome but the initial results were promising.

Like I always say.

It can't come soon enough.

We watch and wait....

again.

Until we find the missing piece of the puzzle.

THE IT'S FIVE O'CLOCK SOMEWHERE EXPERIMENTATION

So..........

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 link......you've got to read it.......Moderate drinking may ease symptoms.

THE WARM BATH EXPERIMENTATION

I like to keep up on the latest research.

I found a neat article about...

wait for it.....

warm water exercise.

That got my attention. Warm water exercise improves Fibromyalgia symptoms and quality of life.  I'm in for that. I didn't get the exercise part unless it was jumping up and down in the spa but....I kept reading.

The study involved about sixty female patients that had Fibromyalgia.

Right after the study concluded they had improved in areas like pain intensity, fatigue and morning tiredness. They concluded that hydrotherapy improved "sleep quality, physical function, professional status, psychological disorders and physical symptoms in patients with Fibromyalgia." 

Oh really??

Can you tell me what professional status has to do with it? Also, it just happened to sneak in there psychological disorders. It is really, really annoying how persistent this psychological, excuse the expression, bull-crapola keeps rearing its ugly little head. Is it basically saying that unresolved childhood issues manifest itself in physical pain??

Science is proving that the pain pathways are altered.

However, some studies still want to imply that it's all in our heads.

I just love the words.

Hydrotherapy.

Warm water exercise.

Basically what there saying is.....

it's not that bad.....

go take a bath and call me in the morning.

CROSS MY HEART? NO.... MY HANDS

Now, I know it's easy to confuse myself.

I just didn't realize that it would be a good thing.

A very good thing.

For some reason the pain that I feel, when the Fibromyalgia really starts to flare, is in my hands. I can tell when it's going to get real bad because I start rubbing the joints at the base of my fingers. 

It starts as a dull ache and then it starts to throb.

I don't know why but it seems like I've been in almost a constant flare for the last few months. I've continued to go on but it it hasn't been easy. The humidity has been up slightly but when I've been this bad before the humidity has usually been higher. I'm not unduly stressed, so what is it?

It couldn't be the exercise could it?

Always before I would have used that as an excuse and opened up the fridge and buried myself in a cheesecake. Then, I'd quit.  Years ago I had a trainer that came to the house and I worked out with him for an hour three times a week. Even after that workout, we'd walk to Wendy's or we went to get cheesecake. It didn't matter because I weighed about 115. I have quit more gym memberships than I can count.

But that was before.

Now, I've made it a part of my life. Believe it or not, I actually enjoy it. Due to a failing thyroid and an autoimmune thyroid issue as well, my cholesterol was hard to control. When all this started going haywire all of a sudden, my weight was hard to manage as well. Throw in some icky medication that causes weight gain and I was a disaster in the making. After a couple of months of going to the gym I got my first set of blood tests. For the first time in a very long time, everything was in the normal range. To say I was beyond elated was an understatement. 

I suddenly got what I refused to believe all along.

Exercise really helps.

So, now I refuse to quit.

Well, back to the hands story. I was reading an article in the Daily Mail.  It seems that crossing your arms confuses your brain and its response to pain. It doesn't take much to confuse my brain anymore but when you cross your arms over your chest, the brain can't figure out where the pain is coming from in your body. 

Amazing, isn't it?

They did testing and found that peoples perception of pain was weaker when their arms were crossed. Part of the testing looked at how the body reacts to the signals of the brain on the right and left side of the body. If you put a glass of water to the right side of the body, most people will reach for it with their right hand. The same is true for the left side. It makes perfect sense to me. I know that the brain maps of the right and left side of your body and external space are linked together. If they are linked together, they are activated together and they react to painful stimuli together.  If you cross your arms over your chest these areas are now longer linked, at least, that's what the researchers found. By crossing your arms the response to sensory stimuli, including pain, is lessened. I think it's a fascinating study and could lead researchers to different therapies that could help chronic pain sufferers.

Now I have a legitimate reason for my brain to be confused.

As if I really needed an excuse................

RISKY BUSINESS

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..........

Anything.

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...................

VINDICATION.......MAYBE?

I've been saying it all along.
The car accident tripped some sort of domino.
But nobody believes it.
Maybe now, they will.

Finally. 

A new study was done to determine the relationship between chronic widespread pain and physical trauma.

I've read tons of posts and articles and quite a few people will tell you that they know the EXACT day their problems started. I've always stated that even though I had some back pain before this accident, everything could be controlled.  Yes, it was annoying but it didn't slow me down except for the few times that it would go out and then I'd be laid up for a few weeks. After it was over it was back to business as usual. I can't tell you how many other people have told me the same story.

Since the 2008 accident it has been so difficult to get anyone to believe that it WAS the cause of  all the problems that I've had the past few years. Everyone has said that it's too hard to prove that the Fibromyalgia was caused by the car accident. I can tell you that everything changed after that day, but getting the opposing attorney to buy it is something else.

This study has found that road traffic accidents to tend to cause widespread physical pain in a way that other physical trauma does not. They now are wondering what is different about a traffic accident.

It makes sense to me that when the body braces for impact and that the impact causes trauma to your spine and neck SOMETHING has to be injured. I truly believe that injury caused the area that perceives pain to react in a totally different way. I'm not saying that there may not be different triggers but what I am saying, at least in my case, is that I have a problem that can be traced back to the automobile accident of 2008.

I know it's one study but I'm hopeful that it can start the ball rolling on other studies that will prove that car accidents can cause Fibromyalgia.

Finally.

THE UGLY DUCKLING

An invisible disease.

Chronic Fatigue.

Fibromyalgia.

Tons have it.

No money to find out why.

I looked up some statistics and found out that between 3 and 5 million people have Fibromyalgia and over one million people have chronic fatigue in the United States. You would think with those kind of numbers there would be adequate funding for research. We are talking numbers in the MILLIONS here and there's very little money to find out why or what causes these illnesses.

MILLIONS.

To put it in perspective, and not to diminish the severity of the illness, MS afflicts somewhere between 350 to 500,000 people in the U.S. and there is funding galore. 

Why?

We have numbers in the MILLIONS and no one knows why or cares why we are afflicted.  The research that is being done is filled with controversy. Once there was testing done with the XMRV retrovirus and it's correlation to Chronic Fatigue all hell broke loose. One group tries to disparage studies being done and forums are filled with vile comments. Now groups are being put together with doctors who don't believe in the XMRV retrovirus and, get this, dentists. What the hell are dentists doing on the team?

These illnesses are debilitating. Something, whether it be an assault on the immune systems or caused by physical trauma, is flipping the pain switch to the on position. Once in the on position it isn't being turned off. We are called lazy, neurotic, malingerers and depressed. We are not believed. 

We live in a state of crisis management. 

So how do we get funding, or more precisely, adequate funding? 

I guess until Fibromyalgia and Chronic Fatigue reaches up and bites someone important in the old proverbial fanny, no one is going to care. The problem is we look normal. We can smile and laugh but it's through the veil of pain. No one cares unless it's visible. To be sick we have to look sick and we don't look sick. Symptoms can change from day to day and sometimes from minute to minute. Doctors either don't believe us or they don't want to deal with us because there is no cure. 

How loud do we have to yell to get something done?

We are the ugly duckling in the world of research.

We want, for once, to be the swan.

SKIN DEEP

What the heck is going on?

I'm speechless.

For me, that's saying quite a bit.

What has happened to courtesy? Common or otherwise?  It's been an amazing couple of days for me and the whipped cream with the cherry on top is the shooting of Congresswoman Giffords in Tuscon, Arizona.

Let me go back a day or so.

I got an email from a friend of mine who is working to help get research on the XMRV retrovirus. He suffers from Chronic Fatigue and Fibromyalgia and has worked very hard to get funding for research. He happened to mention it on a forum and from that moment on his life has been a living hell. I have never read such vile attacks as those I read on a Chronic Fatigue forum by their members. What kind of people are these? As I wrote back to him, rabid attack dogs are kinder than those people. 

There is ABSOLUTELY no room in forums for people like this. Research is limited at best. Funding dollars haven't exactly been thrown at researchers for Chronic Fatigue/ME or Fibromyalgia. After reading what I read I wouldn't want to spend my dollars to help finding a cure for these people. It sounds like they'd still have a problem even if they didn't have this disease. I know I sound very, VERY harsh, but, I hate this kind of garbage. I hate injustice and their vile attacks on someone who is trying to do something good and to pay it forward is unwarranted.

Why can't people just say thank you?

Why can't we just agree to disagree?

Why can't we all just get along?

I sound like Rodney King.

I am on the more conservative side of the fence and I have many friends that tend to be on the more liberal side. Do we agree on every issue? No. Would I ever question their intentions? Absolutely not. 

I was raised to believe that I should treat people with kindness. Not everyone will respond in kind, however, that had no bearing on the way I should act or react, for that matter.  I was raised with class and dignity and will say right here and now that people that use this forum to say vile and hateful things are classless. 

There is a way to disagree with civility.

Things can get heated because issues that are near and dear to our hearts cause us to get quite passionate. That is understandable. To resort to rhetorical or physical violence is hard for me to fathom. What have we done as a society that caused us to bypass discipline when raising our children? What have we done as a society when accountability for our actions accuses us of being intolerant or not "politically correct?"

How do people justify their actions? What warped and twisted rationale is used to say that this is the appropriate way to voice their opinion?

I'm watching CNN and I'm appalled by the shooting of Congresswoman Giffords. Again, I will never understand actions like this. 

It's becoming acceptable to become verbally abusive and to write vile comments when we disagree. 

Physical violence has, sadly, become a part of our everyday lives. 

We only need to turn on the TV and be bombarded.

I pray for a society that doesn't know how to exercise control over our mouths or our actions.