BOZO COULDN'T HAVE DONE IT BETTER

I don't think I need a byline for this.

It says it all.

I've encountered all sorts of attitudes from the medical profession since my diagnosis in 2009. Some of it has been welcomed and some of it skeptical but nothing compares to my doctor visit yesterday.

I had scheduled a wellness visit. It was time for my annual physical exam and blood work. It turned out that my regular physician was ill but another doctor in the clinic was available. Since I was there I didn't see the harm and said OK.

Big mistake.

We were going through my medications and he asked about the Zanaflex. It's used for the muscle spasms that I get at night. When I told him about them and the diagnosis of Fibromyalgia this clown looked me in the eye and said, "Well, I'm not going to write THAT down." I was absolutely stunned. I have never encountered such blatant disregard in my life. I told him that he most certainly would write that down and that he needed to go back to medical school. 

That got his attention.

I told him that whether he liked it or not Fibromyalgia is real and recognized. What is it with some people? Why the absolute stance that it isn't real? It just can't be that it can't be cured. This guy looked at me like I was an idiot. Where does this come from? The good thing is that I'm far enough along from my diagnosis to deal with a clown like this. What do people do who encounter this from the onset of symptoms? I could see, for the first time, what it's like to deal with this issue. 

It's wrong.

It's hurtful.

It's against their Hippocratic oath.

All I can say is this needs to stop. I am going to advise my doctor of this clowns attitude towards me and his refusal to write down all of my medical conditions. 

What an idiot.

I'm sure he has ancestor's that can be traced.

Probably back to the Salem witch trials.

FOR TWO COOKIES YOU CAN HAVE THE HOUSE

A dog is the only thing on this earth,

that loves you more than you do.

The loss of our beloved pets is really tough to take. Most of us run our homes for the comfort and convenience of our dogs. They love unconditionally and even when they hurt, they put that aside and greet their pack with a wag of a tail that uses their whole body.

We recently lost Callie baby. Even when her body was in its last stages no one knew. She loved and played and snacked. A small yelp alerted her family that something was wrong.

No one could have guessed what was coming.

So now we're left to comfort one of our own. Her baby Callie is playing with H at the Rainbow Bridge. I sent a special prayer up and told H to go meet her. They are pain free and playing patiently waiting to be reunited with their loved ones.

All we can do is know how much we loved them and how much they loved in return. They give so much of themselves and ask for so little. Well, except for snacks and treats........all bets are off on that one.

What can we do?

We can smile and celebrate their lives. 

I think they'd want that.


**comfort to you Fessler family........thoughts and prayers with you!

SEROTONIN SYNDROME - THE POISON APPLE

Things are not always as they seem.

The first appearance can deceive many.

A friend of mine disappeared from view for awhile. I was concerned but I understood. Chronic pain makes it very easy to hide. You want to curl up and pull the mantle of pain very close to you; like an old comfy sweater pulled tight. Sometimes it's such an effort to interact. It pulls the plug on whatever energy you have left. Plus, when pain is a constant, it's easier to be alone.

We have a hard time putting this on anyone else. Geez, we don't even like ourselves at this point.

On top of the issues with chronic pain she brought to light a little issue called serotonin poisoning. I'd never heard about it and started researching it. All I can say is, "oh my goodness!" I can't believe what I found and the more I read, the more scared I became.

What scares me the most is that it could happen to any of us.

First of all serotonin is a neurotransmitter that helps regulate many of the functions of the body. Research is showing that people with Fibromyalgia may have low levels of serotonin. Low levels of this neurotransmitter could include: fatigue, sleep problems, headaches, irritability, depression, mood issues, muscle cramps, emotional or behavioral outbursts and bowel and bladder problems. Some illnesses improve when you raise the serotonin levels. Then there is the other end of the spectrum: high levels, and it isn't good.  In fact, it can be fatal.

Part of the problem is that there are pills for everything and we get a lot of them prescribed to us. Compound that with over the counter medications and alternative medicine supplements. There are the antidepressants, the opiates, stimulants, herbs and even something as simple as cough medicine containing dextromethorphan. 


Serotonin poisoning or Serotonin Syndrome can occur in patients that have taken a combination of medications that increase these levels. We tend to forget that supplements can interact with our medications. We take supplements and herbal solutions and don't think twice about it. I know I'll try just about anything to feel better. We need to tell the pharmacist exactly what we're taking and make sure there aren't any problems. There is a website as well where you can list our medications and it will tell you of potential risks. It's called Medscape. Just click on the word "Medscape" and it will link you to the site.


Symptoms of serotonin poisoning are increased heart rate, shivering, sweating, dilated pupils, myoclonus (muscle tremors or twitching), high blood pressure, fever and this can progress to high fever above 106, seizures, renal failure, coma and, in rare cases, death.


If you're on antidepressants, please......please......please be careful and monitor all your medications carefully.


Watch everything. For example, a combination of antidepressant medication, an opioid for pain, taking a stimulant like phentermine and then going to Whole Foods and picking up some Yohimbe or St. Johns Wort can put you at risk for something like this. The problem can come alone in high doses or like the example of taking a combination of medications.


Just be careful.


We have enough issues that we have to deal with.


We don't need any more of them.


All these medications may seem like a pretty apple that will give us what we desire,


but it can be a carefully crafted, dangerous illusion.

ZIP A DEE DOO DAH

How do I love thee?

Let me count the ways.

Then I'll use duct tape on your mouth.

I know that people try to be helpful. I also know that it's real tough to explain an illness that is invisible. So in the interest of our sanity and interaction that doesn't set us on edge......here goes.

What not to say.

There are articles about "what not to say." They are pretty thorough but I like to add a few comments as well.

1.  You don't look sick. No, I don't look sick. If I looked like I felt I would scare little children and most dogs. I know that to be sick I have to look sick but that's not the way it works. We try very hard to keep it together but thank you so much for reminding me that I have to look sick to be taken seriously.

2.  If you exercised, you'd feel better.  I think this is one of my favorites. I think it's especially attractive to crawl into the gym. It's also kind of fun to fall asleep on the treadmill and to feel like roadkill after mild exercise. Of course, I'd be remiss if I didn't mention that we can't crawl out of bed the next day because we're in so much pain from that glorious exercise that you are so kind to mention.

3.  Everybody gets tired.  Yes, they do, poor things. This is like someone pulling the plug on your energy reserves. We love being so bone weary that we can't move. Also, thank you for mentioning this one and reminding me that a lot of the medical community thinks we're either lazy or crazy. 

4.  You'd feel better if you had a better attitude.  Really? I thought I had a great attitude all things considered. If my attitude reflected how I felt inside it just might kill you.

5.  It can't be that bad.  Thank you Lyrica for making Fibromyalgia seem like a pesky little fly that you can flick off of your shoulder. In the same vein and the spirit of the previous comment I will just take a baseball bat and beat the crap out of your body and then tell me that it can't be that bad.

6.  I wish I didn't have to work and could nap all day.  Oh yes, we're little princesses lying about eating bon-bons all day. We love the fact that our career has gone down the toilet and along with that swirl of water in the toilet, our finances are going down the toilet as well.

7.  We all get aches and pains.  It's difficult to even write about this one. Again, people are sometimes under the impression that we feel like the aging grandparents in the movies. "Rheumatism." Just sit on a heating pad and in our rocking chairs. Yeah, right. Don't they get that sometimes just a simple touch will cause excruciating pain?  Maybe I should turn them into a voodoo doll.......would they get it then?

8.  Fibromyalgia isn't even real.  I wish it wasn't. I also just love it when doctors don't believe it. That would scare me because it tells me that they haven't kept up on the latest research. Plus, I'm almost positive that the FDA approves medicines for fictitious diseases. We're not whiners or neurotic so please don't add insult to injury or, in this case, stupidity.

9.  You should try to sleep at night.  We'd love to sleep. Even when we take medication there are times that we will wake up anyway. We are prevented from getting deep, restorative sleep so that our body can repair itself and wake up somewhat refreshed. We also love watching the minutes turn into hours in the middle of the night. Usually when we grab a magazine it's telling us the steps to get restful sleep. Don't even get me started on that one.

10.  Oh, come on......toughen up.  If you think Fibromyalgia is for sissies, think again. If you only knew how tough we really are.....

11.  It's all in your head.  Well, when we get this comment we can, at least, say it's a true statement. Yes, it is all in our heads. This is an illness of the central nervous system. Thank you, however, for saying it in a sarcastic and condescending manner. I, however, love shoving those words right back at you.

This is not an illness that an aspirin will fix. If it were that simple we'd all have stock in Bayer. We would also be chugging them down. Most of us hate what this has done to our lives and we look desperately for a way to reinvent ourselves and ways to feel better so we feel somewhat productive.

By the way,

We have tried every snake oil cure out there in hopes of feeling better.

But thanks for letting us know that eating different foods will cure Fibromyalgia.

Where's that duct tape??

LOW DOSE NALTREXONE UPDATE

New study.

Old pills.

Can we tell the difference.

I wrote about low dose Naltrexone for the use of pain management in Fibromyalgia back in 2010. Stanford University was just preparing for a study on them. I didn't keep track of the study but, I guess, it's winding up and they are publishing results.

Low Dose Naltrexone is an anti-addiction drug but in low doses it acts differently. It has been prescribed off label for Fibromyalgia for the past few years. It is FDA approved, in low doses, for helping those with autoimmune diseases and central nervous system disorders.

Bingo.

On the home page of Low Dose Naltrexone is is suggested that people with Chronic Fatigue and Fibromyalgia are helped suggesting that "these entities probably have an important autoimmune dynamic as well." On the page where it outlines the diseases it helps, under other autoimmune diseases, Fibromyalgia and Chronic Fatigue are listed as well.

Is there hope on the horizon??

Yes, it is most definitely a central nervous system disorder and I also believe it is an autoimmune disorder of that central nervous system. Anyone who was prescribed Low Dose Naltrexone and had an autoimmune disorder, none failed to respond and in many patients there was a MARKED remission in signs and symptoms.

Are there side effects?

Contrary to what I found before, the home page says there are virtually no side effects but there are cautionary warnings. For example, for me, I'd have to start out on the lowest possible dose because I have Hashimoto's Thyroiditis. If I took a large dose there is such a marked improvement that I could swing over to hyperthyroidism very quickly, so I have to be careful.

Plus, if you are already dependent on opioid for pain management, you'd have to be off those for a few weeks before starting the Naltrexone. That, in itself, poses a problem. If you're on opioid for pain being off them for a few weeks is just more than deciding to stop them. Stopping pain medication suddenly can throw you're body into a real tailspin and this needs to be done under the supervision of a medical doctor. Not to mention that being off them will cause some of us to curl up in the fetal position and feel like we want to die.

There is some possibilities here but I think that we need to put it on the balance bar and weigh the benefits as opposed to the side effects. Other sites state that the list of side effects includes, dizziness, headache, nervousness, insomnia, fatigue, joint pain and excessive muscle contraction. These side effects are what I experience on a daily basis so how would I know if it helps?

The problem with a drug that promotes itself as a cure-all for every autoimmune disease is a little suspect, in my opinion. How can one drug help so many diseases that have different causes and symptoms? 

Increasing immune activity doesn't always mean that it's helping the immune system.

In fact, couldn't that make it worse?

On the other hand, big pharma aren't real interested in a drug that will make them no money. Naltrexone isn't real expensive and clinical trials are initiated by the drug companies. Why do it for a drug that is already out there and no big profits?

I think it bears watching.

Whatever it is we will be caught in the crossfire.

Big Pharma can't make money, so it's no go.

Doctors don't believe it, so it's no go.

When do we get a chance to say what we want?

MICROBES HAVE BROTHERS

For every microbe you see.

There are a million that you don't.

I learned something new. I was reading an article out of the Costco Connection magazine about Fibromyalgia. What caught my eye was something that I'd never seen before.

Fibromyalgia was classified as an autoimmune disorder.

This really strikes a chord with me. I have a thyroid issue but along with that tags along Autoimmune Hashimoto's Thyroiditis. I also found a spinal issue that I have also on the list. But, to my amazement Fibromyalgia and Chronic Fatigue are also on that list. I'm going to add links to these lists as well. Just click here. We have enough trouble being believed in the medical community, now I find it's classified as an autoimmune disorder??

Why can't someone get this straight?

Like I said, where one autoimmune disease lurks another one is sure to follow. Something always felt wrong about this being a "syndrome" and muscular in nature. Now, things are becoming a little clearer. According to the Marshall Protocol Knowledge Base, a research foundation that deals in autoimmune disorders, our immune system becomes compromised by the very nature of chronic illness. All of our symptoms are so intertwined with other known diseases and illnesses. Is it any wonder that no one knows what the heck is going on with our bodies?

Least of all us.

Is it an issue with the HPA axis? The Hypothalamus, Pituitary and Adrenal axis does interact with the immune system and the control of pain. Let's not even get started on the stress effect. So what does all this interaction tell us?

It tells me we are really screwed up somewhere.

Generally Fibromyalgia is regarded as a noninflammatory and non autoimmune but some show evidence of autoimmunity. Also, in autoimmune diseases, there is evidence of Fibromyalgia. It can drive you crazy looking at all the articles regarding this disease. 

I feel like I'm going in circles.

No, it's more like a maze.

More twists and turns and you can't get out.

RELIEF PLEASE

I've tried it all.

The pain is still there.

Erased by pain again.

I know I've made light of a lot of things. I do believe that laughter and humor can go a very long way in helping us cope with a very real and debilitating illness. Sorry, I should have said "syndrome" since Fibromyalgia is not an "illness." Lately, its been tough to reach down and find the humor. My coping mechanisms have been on overdrive lately and trying to find the words has been tough. Usually, I don't have a problem expressing ANYTHING. That's why this latest flare has been so rough.

I still attribute this to the perfect storm of events culminating with my lovely epidural injections. 

I will finally go back to the doctor tomorrow and he'll want to know how I coped. Trust me, I can't wait for this appointment. I will be telling him exactly what I've been feeling..... no thanks to him.

I have done everything. 

I've played by the rules.

I have been consistent. I go to the gym pain or no pain. I still say that exercise has had no effect on the level of pain that I experience on a daily basis. It may help me cope but it doesn't do anything to help the pain levels. Exercise is supposed to help restore the bodies neurochemical balance. It boosts endorphins. It is also supposed to desensitize the bodies reactions to stress. It does help me feel better about myself and it helps my emotional state of being but, again, it does nothing in regards to pain levels. 

More often than not I feel like roadkill when I leave the gym.

I had a friend of mine suggest that the pain might go away if I had a more positive outlook. I just love comments like that. I reminded them that this is not a psychological problem but thanks again for the support.

What is the trigger? 

In my case it was definitely the trauma of the accident that triggered the Fibromyalgia. Genetic predisposition my be a part of this but there is something we are all missing. There are low levels of chemicals that inhibit pain signals such as serotonin and norepinephrine and at the other end of the spectrum there are high levels of chemicals that cause pain signals such as Substance P and glutamate. So what causes the low and high levels?  There is definitely a change in the way the brain processes pain. 

Well, we have trouble with our dopamine levels also.

What triggers the levels?

I wish I knew the answer to that question. 

Oh, by the way, the weather has been all over the place as well.


High humidity and wind.


It just keeps getting better and better......