PAIN CATASTROPHIZING AND OTHER NONSENSE

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 PhD.'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.
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 hot and summer is coming.

That's not a good sign.

I better think and write while I can.

Catastrophizing my a**.

PUMPED UP KICKS AND FEEDBACK LOOPS

I always knew I was dysfunctional.
I just didn't know it ran so deep.
Clear down to my neurotransmitters.

I think we all have a dysfunctional neurotransmitter system. There has to be a reason that we don't all have the same symptoms and we don't all respond to the same therapies and medications. 

We have pain perception problems. 

Isn't this linked to neurotransmitters?

Chronic stress can contribute to Fibromyalgia but it isn't a cause, otherwise, everyone on the planet would have it. We all know that chronic stress changes the neural pathways in the brain but to what end?  Depression isn't the cause because not everyone who is depressed has Fibromyalgia. I think it's like everything else. There may be risk factors for the development but that doesn't mean you're going to get it. There may be a genetic predisposition depending on many things, but again, what is the trigger?

I'm on a roll here.

So what do we know?

1. We know that Substance P, glutamate, are elevated in Fibromyalgia and this accounts for an increased pain sensitivity. 

2. The lowered levels of serotonin and noradrenalin in the central nervous system could be the reason that the descending neural pathways are messed up.  This can cause issues with sleep and depression. 

3. The HPA (hypothalamus-pituitary-adrenal) axis and the sympathetic nervous system are off but it may be a symptom but not a cause of Fibromyalgia. Dopamine levels are also off which can cause our achy-breaky stiff muscles and brain fog.

I'm not a doctor (obviously) but doesn't this suggest subgroups? I know people with Fibromyalgia and they have pain but the fatigue seems to be more of an issue than the pain. With me....yes, I have the fatigue but pain is far more of an issue with me. Maybe this is why medications like Cymbalta and Savella work well with people who have more of an issue with serotonin levels and less of an issue with elevated Substance P and glutamate. 

Maybe by targeting the specific subgroups and medications that work specifically for that group.....is that a way to get better results than lumping us all into one group? It seems that pain with depression and pain without depression respond differently to medications. 

The only thing that works for me is the oxycodone in very small doses (5 mg.) and Zaniflex which controls the muscle spasms. Lyrica made me squirrely and gain weight and did nothing to help the pain or fatigue but others swear by it.

What I find VERY interesting is that Zaniflex (tinzanidine) reduces Substance P levels. Since the prevalence of pain is my main issue isn't this why this might work for me and not for someone that has a predominance of fatigue?

I think that the argument against using opioid in treatment  has more to do with the general issue of doctor liability and the risk of dependency. Right now it's politically correct to be against these in pain management because of a group that abuse them. 

I don't like a lot of them because of the addition of acetaminophen. Long term use can cause damage to your liver. When I went on the oxycodone my pain doctor and I had a long talk about it. He did explain the risks but also told me this would be better as a long term treatment because of the damage that anything with Tylenol or acetaminophen would cause. He knew that addiction and dependency were two very different animals and I was low risk for addiction. 

I just don't think you can pour everyone with Fibromyalgia in a bowl.

It's like making a cake.

You need to add one ingredient at a time.

If you add too much of one,

You get a mess.

This is what they've done with us.

STILL STRESSED AFTER ALL THESE YEARS

Can we ever be stress free?

Not in this life.

I always thought that my body thrived on stress. As amazing as that sounds, I really thought that I was at my best when under pressure. I had no idea what I was doing to myself.

What does happen during stressful situations?

What happens is your body goes into the "flight or fight syndrome." Your liver produces more glucose for energy for your muscles. Your body produces cortisol which suppresses the immune system. Your blood pressure rises.  Adrenaline is secreted so your body is ready for action. A body full of adrenaline can do superhuman feats. 

You are now "in the stress zone."

Actually, you're in survival mode.

Cortisol is produced in the adrenal cortex in the adrenal gland.  In small amounts it can heighten memory functions, lower sensitivity to pain, help maintain your internal equilibrium and give you a burst of energy. However, at its height, stress hormones are released into the body in an unprecedented rate. 

When your body perceives that threat the nervous system responds by sending hormones into the body. You are on alert. Your muscles tighten, your heart beats faster, all your senses become sharper, your blood pressure rises and you breathe a little faster. It is your bodies was of protecting you. 

So what if we live life in the fast lane?

Chronic stress is different than the momentary flight or fight stress. Chronic stress changes the way the body functions because we don't flip the switch that turns the flood of hormones off in our body. The heart can become more susceptible to disease from the constant flow of cortisol. Brain function can be compromised and learning and memory can also be altered. The immune system is suppressed. 

If you don't switch it off your body doesn't have the opportunity to return to normal.

When the stress that you're under is greater than your body can tolerate you become more at risk for stress related disorders.

The body doesn't differentiate between physical and emotional stress. Stress is stress. When you keep yourself in stress mode it becomes harder and harder to shut off the switch. That stress I thought I thrived on? It's that Type A personality that prides itself in its ability to be super person. 

Stress morphs itself into that old familiar warm and fuzzy bathrobe. It feels good to put on because its just too hard to become laid back but the price you pay for that warm and fuzzy feeling is very high. Very high. Over-achieving and perfectionist is what it is. You don't sleep right, you don't eat right and you think you're cruising through life.....

Until.

Anxiety, depression, insomnia, heart problems, immune problems, autoimmune problems or worse. Make no mistake. Stress can kill. 

Put the effects of stress together with a central nervous system dysfunction that is found in Fibromyalgia and you have a recipe for disaster. We have to find a way to breathe through the stress. Do whatever it takes because we have to. Try yoga, aromatherapy, acupuncture, massage, biofeedback.....anything.....going outdoors and looking at the sky......whatever it takes to relax.

Thrive on stress? 

Nope.

It just makes us worse for the wear.

And it just isn't worth it.

THE PERCEPTION OF PAIN

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**.

THE EIGHTEEN WHEELER MANIFESTATION

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. 

Really?

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.

PUMP UP THE VOLUME

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.

OK...........

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

I THINK I GOT DISCONNECTED

Now, I've heard it all.

So to speak.

I love a good play on words.

I cannot believe what I just read. I'm going to include the link because I think everyone with Fibromyalgia should read what we're up against. Talk about making us believe that if we just talk out our problems it will make the pain all go away. Are we back to the medical community believing that this is all in our heads?? 

And it all comes down to a phone call.

I am absolutely amazed. I mean, I'm all for positive thoughts. Well, maybe I'm not. I've been told that I'm not an overly cheerful person so I'm just not the type to be optimistic and cheery. That's just not my personality. I'm of the persuasion that if it can go wrong, it will and at the worst possible moment. I'm not the one to talk about the power of positive thinking. I take that back....

I'm positive that it won't work.

If I follow that logic than I, by a mere phone call by my new BFF, can cure or at least manage the symptoms of any disease. Pain can be diminished by a mere uplifting and happy conversation by a cognitive behavioral therapist. I know some therapists and they also have chronic pain. They don't believe this for a moment. We'd all love it if it worked. We would be on the phone constantly and have our old life back. 

Oh, lest I forget, exercise is to be combined with this therapy. The one thing they can't figure out is how to manage the other symptoms that accompany Fibromyalgia. Also, it's not available and the cost is more expensive than they'd like. 

REALLY?

People have seen me curled up in pain. They've seen me normal, or as normal as I can be, and  they've seen the ugly. I'd like to take a survey and see what they'd say about this therapy. I don't think I could write some of the comments due to the language that would be used. I have and would spend my last dime if I thought it would help. What I can't understand is why this is the first treatment of choice. Maybe for mild pain but for moderate to severe pain?


Studies just love link Fibromyalgia to something. If it's not depression, than it's to Vitamin D deficiency or aspartame or mercury levels or stress or weight gain or, or, or, or, OR....... geez, it gets tiring of reading what researchers are trying to link Fibromyalgia next. It's still purported to be cured by nutritional supplements and while I think it does help our fabulous machine called the body, I don't know if it "cures" anything. I just get weird about things like that. If that's the case then it's just one step away from it being "our fault." I just don't think it's that simple. Fibromyalgia can be linked to anything but what happens in our central nervous system that flips the switch? Why not study that?


Research has come a long way and it has seemed to reclassify Fibromyalgia as a central nervous system disorder. I just can't figure out why we are still shipped off to rheumatologists rather than neurologists. I understand its because the symptoms manifest themselves as muscular pain but I still think a team doctor situation would be the best. One day, just maybe, there will be something that will work for us. It's just still tough when the medical community looks at you like you're nuts. 


The final insult, in my estimation, was that a researcher implied that the phone call might be tough because people with Fibromyalgia might not stick to it. That call is going to make me "aware" of how my thoughts and attitudes affect how I feel. Really? I'd like to tell them how I feel.


So, I guess, now I wait for the phone call.


We're the winner of the Fibromyalgia lotto.


One call, that's all and you're out of pain.


OK....maybe that's absurd.


Well, so is the premise.




Here is the link: Talk Therapy

CAPTURING THE CROWN

I've just captured the crown.

"Miss Erable" 2012

It's been difficult to write lately. On several levels. Have you ever wanted to convey something but just couldn't find the words? Of course, we have Fibromyalgia. On the other hand, it gets tiring writing about hurting all the time. I'd love to write something uplifting but, right now, it's tough to lift my hands let alone my attitude.  

I've gone into hiding.

Hiding from pain. Hiding from the depression that pain seems to bring. Hiding to keep focus and hiding to try to get my life in order. I've said it in a number of prior posts. Ever since those wonderful epidural injections the pain has gone into hyper-drive and managing it is a full time job.

I will say this, I've tried to walk the straight and narrow. I have not stayed curled up in a fetal position even though that's precisely where I'd love to be. I continue to work out and, at the very least, walk at least four miles a day. It not only gives me the exercise I need but it also gives me time to reflect. I know I've said this before too; exercise does not help relieve my pain. What it does is keep my muscles moving but, for me, the pain is still in the background. 

Did I just say the pain is in the background?

Wrong. Let me rephrase. No matter what I do I am reminded that I am in constant pain. So, how do I deal with it more effectively without adding more medications to my ever-growing list of them? Should I try massage or acupuncture? I've become hesitant on both because it just hurts to be touched right now. Should I just tough it out? 

At least I have an outlet. Research seems to be what is holding it together for me. I've been reading interesting documents from Canada. It's probably the most comprehensive and accurate document that I've ever read concerning Fibromyalgia. I will include the link at the bottom of this post because I think everyone who has this or knows someone touched by this invisible disease should read it. 

So as I accept my crown for Miss Erable 2012,

I wish that I could be runner-up.

I take that back.

I wish I wasn't even in the competition.

Link:  Fibromyalgia Syndrome

REWIRING THE CIRCUITS

My body is like the computer.

The hard drive isn't functioning.

I've had an interesting time lately. Ever since those fricking epidural shots my body has had a mind of its own. Every coping mechanism that I have used to control the pain hasn't worked. I had become a master of control. I even congratulated myself on that fact.  Even though the pain was ever-present, I had coping mechanisms that I would use to exert some sort of control over my body. Anything and everything would be tried and tested so that the days spent curled up in a fetal position would be minimized. I know that I would always have a level of pain but I thought I could control the levels. Control has always, always been my issue.

And I don't like being out of control.

Stupid me.

I haven't been sleeping real well. I mean, I do sleep but I am in that awful shadow of sleep. The one where you know you're asleep but it feels like you're awake? I know we have sleep issues but lately they're more pronounced. Why is it that all the articles on sleep fail to miss one important issue? If we lay in the dark and have nothing to distract us from the pain we will not drift off into blissful slumber. Instead, we will lay there in torture until we get up and do something else or have something else to help us pass the time.

Lack of sleep equals more pain and I understand that. Why do we have the alpha waves intruding into whatever possible sleep we might be able to get? Is the issue in sleep; not the actual sleep per say, but the ability for the heart rate to slow and the ability to breathe deeply enough to achieve that REM sleep that we need to replenish and restore our body?

There is an imbalance in the autonomic nervous system. 

The autonomic nervous system controls our unconscious bodily functions such as heart rate, breathing etc. There are two subsets: the sympathetic and parasympathetic. The sympathetic nervous system controls the flight or fight. Our bodies don't respond real well to stress and our cortisol levels are usually in overdrive as well. The parasympathetic system controls the quieter bodily systems such as digestion. So if this holds true, the sympathetic system gets us ready for flight and the parasympathetic gets us ready for rest. One or the other predominate inappropriately at inappropriate times.

We are screwed because neither one works.

We can't stop the flight and we can't rest.

Is it any wonder that we have pain?

So I guess when they find the "off" switch for the flight or fight and the "on" switch for the rest part of our brain we'll be fixed.

If they can flip the right switch.