Tuesday, May 27, 2014


Who knew?

I got an email from Tonix Pharmaceuticals and they offered me the opportunity to interview the doctor that is the head of the pharmaceutical company and I could post the interview on my blog. This is an exciting opportunity for me. I really have looked at this trial. When I went for a clinical trial here in Las Vegas I asked if it was the TNX102 trial. If it had been, I would have jumped at the opportunity. 

I am reposting this and look forward to the interview with the doctor. 

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 musculoskeletal 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....


Until we find the missing piece of the puzzle.

Tuesday, May 20, 2014


There are so many things we can't do. 
But by the end of this long word.....
there must be quite a bit we can do.

A - is for alive. We can be thankful every single day that we are alive. No matter how bad it gets, it's better than the alternative.

A - is for acceptance. This has changed our lives, no doubt about that.....however, we can still lead full lives. Our body just will remind us we can't go every day at full speed.

A - is for adapt. We've learned to accomodate our lifestyle to our bodies needs. It's ok....we can still find something to do to help others navigate this "thing" called Fibromyalgia.

A - is for authentic. The best thing we can do is be our authentic self. I can tell you that Fibro helped me find that. Being in sales I had been used to being a chameleon. It tends to cloud who and what you want. It took awhile but I no longer feel I have to please everyone else BUT me.

A - is for achievement. I was watching Dancing with the Stars last night and Amy Purdy is truly inspiring. For all her limitations she became an amazing, accomplished woman who put her disability in it's place. Look at what she has achieved in her life and then tell me that we can't do it because we hurt.

A - is for abundance. God's grace through adversity is given to us in abundance. Another thing I've always said, "suffering builds character....ok.....I've got enough character." (And yes, I have trouble sometimes with this one.)

A - is for appreciative. Take the time to appreciate what you do have instead of grumbling about what you don't have. (Yes, I've had trouble with this one too) When I'm reminded of all the good things Fibromyalgia takes a back seat.

A - is for active. There are times it's real tough to get moving, but we must. Those aching, stiff muscles need exercise. Now before everyone gets riled up, exercise does not mean an hour in the gym lifting weights or sweating on the elliptical trainer. It means movement. Staying in bed is good for the occassional pity party. I've done it myself and, to my way of thinking, feels good every once in awhile BUT those achy muscles do need to move. 

A - is for accomplish. There is no limit on what we can accomplish. Chronic illness is not a death sentence. We may need to change our outlook but we can have a fulfilling life.

A - is for aware. We need to stay aware of our bodies and understand what it is trying to tell us. We can't push too hard or we will pay. (I've had trouble with this.)

A - is for affirmation

A - is for attitude. Attitudes can do a lot. It can give us the determination to push through the pain to find what this life has in store for us. It keeps us happy and grateful. When the proverb says, "laughter is the best medicine," they weren't kidding. Do it. It works wonders.

A - is for amazing. Look up in the sky. Watch a baby's face full of wonder. Look at the sunset. See creation for all it's glory. If you can't go out and see it, see it virtually. This world is amazing and it's waiting for us.

A - is for almost. Even though I'm writing about what we can do, I fall short of it. I think we all do but reminders are good. They help us make it through another day.

A - is for AWESOME!

As I've said,

Fibromyalgia isn't for sissies.

We're tough,

We're strong,

As yes, we are chronic illness,


We are awesome!!!

Monday, May 12, 2014


It's Fibromyalgia Awareness month.
Yes, we are.

I - is for Invisible Illness. We look fine so we can't be sick. It's those lovely little Lyrica commercials that make Fibromyalgia look like a pesky little bug that we can flick off our shoulder and, voila! Life goes back to normal. I don't know whether that commercial has helped us become more visible or it's hurt the cause.

I - is for isolation. Because we don't know what the day will bring we tend to feel isolated. Chronic pain brings it's own type of isolation as well. I know that I get tired of hearing the question, "how do you feel?" I can only imagine what the person asking the question must feel like. I dread giving the answer and I'm certain they dread hearing it. Again.

I - is for impatient. I get impatient with my body but I'm more impatient with my mind on the days that the "fog" has set in with a vengeance. My mirror is full of sticky note reminders. My phone has a calendar that has appointments and notes to self in there. Do I remember to look at either the mirror or the phone? I don't remember.

I - is for irritation. That above mentioned impatience also leads to irritation. Those appointments I forgot about? Well, as I'm looking for my keys to run to them, AT THE LAST MINUTE, that leads to being very irritated with myself that I can't remember to check the calendar to see what the day will bring. 

I - is for inarticulate. That lovely little fog that keeps me searching for words. That same fog that makes me lose my train of thought right in the middle of a sentence giving me that lovely, glowing, deer-in-the-headlight look.

I - is for intelligence. I used to have some.

I - is for individual. This same illness which plagues so many of us cannot be defined in the same way for every person. The same medication that works for me may not work for you. Which brings me back to physicians who need to treat you like an individual and not throw some antidepressants at you and show you the door.

I - is for illogical. The way my body reacts to anything anymore is just plain illogical. What the heck is this new symptom popping up? 

I - is for I

I am still invisible because I don't want to appear different than I used to be.

I am still strong.

I am still weak.

I am still me.

I am still chronic illness.

Thursday, May 8, 2014


Let's start out with genius.
I had no idea how long 
the word Fibromyalgia actually is.

G - is for genius. Let me reiterate. Fibromyalgia is one HUGE word when you decide to write about it.....letter by letter.....

G - is for gloomy. It doesn't matter how well we are doing with this.....there are days that we are just going to be gloomy. Chronic pain tends to do that. Throw in a couple of other autoimmune illnesses and you have mixed a very interesting cocktail. 

G - is for grouchy. OK, when I hurt I tend to get a tad grouchy. Oh hell, it's a lot worse than that. When it gets real bad it's better that I retreat into my room and wait for it to pass. I make everyones life a little better when I do that. 

G - is for the good days. Thank goodness we do have them. They may not be real good, they may not be what we were before but I am thankful for every little break. 

G - is for grateful. As tough as it is, we must be. As I've said before.....it could be so much worse. It could be. I know days it feels like it but.....we are not dying of Fibro. That attitude of gratitude is so important. What chronic pain can do is bring thoughts of ending it all. It feels like to go on is impossible. If you have those thoughts......PLEASE GET HELP. Call someone....anyone. Life is truly worth it.

G - is for giving. There is nothing that makes you feel better than giving to someone else. If you are mobile....find a support group and help those that are struggling. Even small acts of kindness are incredibly fulfilling. Pay it forward.....it makes you feel wonderful!

G - is for guilty. We feel guilty. Guilty when we can't be at family functions or going out with friends.....AGAIN. We wonder if they think we're faking it. We push and go anyway forcing smiles when our body is crying out. We pay for that later.........

G - is for grieving. Remember that life we used to have? We may not be able to have that life back but, remember, we can have a fulfilling one. It's natural to grieve but look forward. Limitations of all kinds will be there but we can still move past them.

G - is for gentle. Be gentle with yourself. Do you ever think you brought this on yourself? You didn't. Listen to your body and don't beat yourself up. Yes, it's overwhelming at times but, "this too shall pass."

G - is for goofball. Be one.

It's always good to be a little goofy.

It lifts your spirits.

It makes you laugh.

and laughter is good.

For your body,

for your soul

and for your spirit.