Wednesday, October 31, 2012
There is no dignity left.
I usually dread Halloween because it would drive the doggies nuts. Given the prospect of doorbells ringing and dogs barking I still want them to dress up a bit.
Mr. H loved his tux but HATED his pumpkin outfit. He looked like a big, fat tick. Buster decided to be bat-dog and protect the masses at "pawthum" city. (thanks D!)
Just a quick post to show him waiting for his share of the candy. No, he can't have chocolate but he does get his "snackers" in a cute Halloween bag!
So now we're on to November and 30% humidity. It's been a pretty rough time. Just when you think it can't get any worse.......
Bat-dog is ready to retire to the bat cave.....
It's been a very stressful night.
Tuesday, October 23, 2012
I like this one.
And it's been used in Europe for years.
Flupirtine. Interesting sounding name.....who names these things?? Anything starting with a "f-l-u-p" sounds kind of dorky to me, but hey, what do I know?
But, again, I digress.
I do that a lot.
This is an exciting new drug on the horizon. I'll include the link to the articles at the bottom of the post. I've never heard of it and it sounds promising. Anyway, this drug is neither an opioid or an non-steroidal anti-inflammatory drug (NSAID). It has properties of being both an analgesic and a muscle relaxant.
It has been used in Europe for the last 25 years for treatment of pain after surgery, trauma, dental work, muscle spasms, cancer and degenerative muscle diseases. The FDA graciously granted phase II clinical trials to be conducted for the treatment of Fibromyalgia.
This has been used in Europe for 25 years?
For extreme pain and muscle diseases??
Why don't we have it here?
The side effects are minimal and there isn't the dependence issue that your body has with an opioid. The NSAIDS have been associated with gastrointestinal issues and, again, this isn't an issue with flupirtine.
It sounds like a miracle drug.
But, believe it or not, it hasn't been introduced in the U.S. for any reason.
I can't wait to see more about this.
25 years........we've never had this.
Sunday, October 21, 2012
This is my list.
I have accomplished just that.
The one thing that chronic illness changes is your whole life. I know that doesn't sound like it's just one thing, but, it's the easiest way to explain it. There isn't one facet of your life and the people that surround you that is not affected.
I get tired of doing nothing.
I used to think that retiring would be the coolest thing. I wouldn't have to get up and work anymore and I could do what I wanted to do. It sounds like a great thing but, in reality, it gets kind of boring.
How much TV can you watch??
Well, I can watch a lot. No problem there because I love movies. What I mean is that if you could have all you wanted of the yummiest dessert ever, non-stop, everyday.......you would soon get real sick of that dessert.
The other problem is that the weather is changing and I can feel it in every bone and muscle in my body. I just start to feel a little bit better and then it rains, or it gets cold OR I just feel like crap. It just doesn't seem to end.
I know I'm whining.
At least the summer weather is finally gone. I do much better when the weather is cool but the transition kills me. I love it when the thermometer hits the 70's. It feels so good. I've always said that you can always pile on sweaters and jackets but when it's hot.....well.....you can only strip down so far....and it's still just fricking hot.
So what else can I whine about?
Well, I still hate the fog that surrounds my brain.
I can't find my keys.
I can't remember the words I want to say.
I can't remember where I wanted to go.
I think I know where I want to go.
I think I'll just go to bed.
Tuesday, October 2, 2012
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.
Monday, October 1, 2012
While I love calamari rings, the tentacles,
or testicles (as my daughter would say) are not my favorite.
What does this have to do with anything??
I was just stumbling around this morning (what else is new?) and trying to see if anything was new out on the clinical trial horizon. What I found was staggering (and yes, I do that too). I was looking for pictures on Google images and saw a cool picture of hands. I started looking at some of the links and found out about the Calmere Therapy protocol.
What would I give to be off medication and relatively pain free?
Everything I own.
The clinical trial by the University of Wisconsin has finalized. The final processing was done on September 30th, so we should be able to see the results any time now. I'm putting all sorts of links in this post because this is the first thing that looks like it may work.
Basically, what it does is take the pain signals and sends an artificial signal that says "no pain" to the brain.
I think I missed it because it has been filed under chronic neuropathic pain and indicated for cancer patients with chemo induced neuropathy. As you continue down the list though, it is for low back pain and neuromuscular diseases. Yep, that's us!!!!
During the treatment patients usually experience no pain and the duration that it lasts is determined on the underlying cause and intensity of the pain. You get treatment one treatment a day for two weeks and then booster treatments as needed. It's non-invasive and, obviously, drug free.
It looks like a giant Tens unit but it's faster, stronger and more effective. The Scrambler Therapy recorded at 59% reduction in pain. Let me tell you, if something reduced my pain by almost 60%......I could be functional again.
The Mayo Clinic is conducting trials using the Scrambler Therapy as well. There are locations across the country using this protocol.
I just think this is kind of interesting.....
At least it woke me up this morning........
Caffeine and getting scrambled.........
Works for me!
Just as an FYI.....when I spell checked neuromuscular ....it came up numskull.
How fitting is that??????