Wednesday, April 27, 2016

A CATAGORY 5 HURRICANE












I don't know if what I've been through,
can be called a flare.
A flare?
It's more like a bomb went off.


This has been a difficult post. I want to convey how bad this flare actually was and balanced so that the people I care about don't worry. The worst has passed but I've never, since my diagnosis, been through a time as bad as this one. Fibromyalgia is sneaky. You can be fine one day and crash the next. Heck, you can be fine one minute and crash the next and that is just what happened to me. I've had bad days and fair days and semi-ok days. So what's the big deal about this time? What happened? I was blindsided. 

I went into denial. OK...It will be better in a few days. Then I went into a soul sucking vortex of pain and the inevitable depression that kind of pain brings with it. In other words, the twins visited with a vengeance. Maybe I should have gone to the doctor looking like I felt; something the cat just dragged in the house, something that would scare babies and small children. Maybe I shouldn't have tried to suck it up and put on my big girl panties. Maybe, maybe, maybe. I think I'm conditioned not to admit this kind of pain. The pain that makes me feel weak.

So what did I do?
I went off the grid.
I didn't want to go anywhere.
I didn't want to see anyone.

I tried the doctor. His answer? Just up the opioid. I didn't want to go there. They truly scare me. I respect the power of these medications and I don't want to go down that slippery slope. If I can't deal with it on 5 miligrams then I will just have to try something else. Binge watching Two and a half Men, Big Bang Theory, Criminal Minds and Blue Bloods? Nope. Didn't work but it's a pretty good distraction. Let's try something else.

Let's start with balneotherapy. Ha! I got in the bath with Epsom salts.

Usually I can stay in the tub and get through the aches. This, however, was not the icky ache. This was the voodoo pain that was stabbing me in every joint that it could find. 

And it didn't let up.

When a flare like this hits it just doesn't go away. From the moment we open our eyes to the moment we close our eyes we're engaged in battle. We all think we're wimps but nothing is farther from the truth. We battle depression that springs from pain. We battle constant pain that ranges from throbbing to gut wrenching. We battle ourselves because we constantly think that we're inadequate. Being in jail handcuffed and bound is so tough to take. There will be limitations on body and psyche. 

Limitations?
Throbbing?
Gut wrenching?
I flew by that about day 5.

I decided to put the covers over my head and just give in. There is a time when it's appropriate to surrender and though that truly goes against my nature, I did it. I really understood how people can just give up. Now, I do believe that attitude can help or hinder just about everything in your life. It can push us beyond "the can't." I understand that. But, there are times it's hard to find no matter how much we try. I was in one of those times. I threw myself every pity party there was and it still didn't help. I tried to tell myself that if I would just improve my attitude then my symptoms would go away. 

They didn't.
It made me think that I was the master of my own demise. 

I think the problem is that there is no middle ground. We are not allowed to be tired or have pain. We're supposed to just suck it up and multi-task our little stressful lives to the fullest. We're supposed to be tough and push through pain and fatigue. It's not too much to ask is it? Life is supposed to be lived and if we can't do that it's because we don't have the emotional strength to deal with pain. People think we have more of a defective mindset rather than a real illness. If you are ill and you give in to it....you are weak. Now, even if the pain is severe you are expected to just take a Tylenol and deal with it. Well, that's fine for the short term but evidently the powers that be figure that, for the long term, liver damage is better than addiction. They can't even find a middle ground.

I read about how to cope. 

I know it.

I use it.

But sometimes it just doesn't work.

Sometimes you just have to bow your head...

Say a prayer....

And weather the storm.





Thursday, April 7, 2016

KETAMINE FOR FIBROMYALGIA? NOT YET.











On the street it's called Special K.
It's a horse tranquilizer in veterinary medicine.
It's a money maker for chronic pain.


I get it. Sometimes the pain gets too much and we're at the end of our rope. We want to reach for something, anything that can promise relief from the pain. We just need to be careful that we are not reaching for something that can do more harm than good.

Ketamine infusion therapy is big business in the chronic pain world. A single infusion can cost $2000 a treatment and, believe me, the recommended course is definitely NOT  a single treatment.

Ketamine is used to produce a loss of conscienceness. It's used as a general anesthetic but because of the hallucinations that it can cause it's not the primary choice. It is used by compounding pharmacies as a cream with lidocaine and ketoprophan as a topical pain reliever.

This drug is no joke.

It increases your heart rate and blood pressure. It can cause hallucinations, dizziness, nausea, blurred vision, nightmares, memory problems and if used long term liver abnormalities. It induces a state of disassociative anesthesia. 

Scary.

Years ago a study was done with 34 Fibromyalgia patients. They got a low dose Ketamine infusion followed by a dextromethorphan treatment. 19 responded to neither drug, 10 were favorable to both, 3 were helped by the ketamine but not the dextromathorphan  and 2 were helped by the dextromethorphan but not the ketamine. Link to study

There are sites offering Ketamine therapy. Everything about Ketamine states you should be monitored closely due to adverse effects but there are places giving you this therapy on an outpatient basis. Now they do tell you to stay with someone so if you have any ill effects they can get you to a doctor. Gee, that's comforting. I may have someone watching me who hasn't got a medical license and they are the ones to watch for adverse effects?  They also tell you that it may not work and this is a totally elective therapy. 

It gets even better. There is a Ketamine Coma Therapy being offered in other countries. It is given in extremely high doses so that a coma is induced. This, obviously, is not approved by the FDA. 

Back to the infusions......they tell you that if you want it YOU NEED TO SATISFY YOURSELF by the research YOU DO through search engines. In other words, we just give it to you and if there's a problem you should have done better research. To me, that borders on negligence. We need qualified people that will tell us the realities of medicine and what it can do. We shouldn't be the ones doing the search and then telling the doctor it's ok. 

It also tells you tough noogies because you may elect to proceed knowing it may have no benefit. They also tell you the greater number of infusions you have the greater the benefit. 

At 2 grand a pop that sounds like double speak to me.
Just keep paying and pray it helps.

I'm not saying it may not help some people. It might. 

Everything in me shouts NO.

Everything I read about this drug screams "dangerous in the wrong hands."

It's a street drug that packs a wallop.

It can kill you.

Please be very careful if you are going through with this therapy.

You need to be watched carefully.

Personally?

I wouldn't do it.

*** This post was written about a specific place and person which shall remain nameless. There are legitimate uses by doctors and hospitals.