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. 










Thursday, March 24, 2016

THE JESUS SHOT.









If it sounds too good to be true.
It usually is.
And now, they add Jesus to the mix.


I'll never understand people who, for their own benefit and marketing purposes, throw the name of Jesus into the mix so people will (excuse the word) flock to their practice and get the shot.

There are millions of people in pain and, if you are Christian, he's marketing right to you.

First of all, let's do a little background on the doctor. His name is John Michael Lonergan. He is approximately 67 years old and spent part of those years is prison for mail fraud, tax evasion and health care fraud in Ohio. His medical license was permanently revoked in Ohio and Oklahoma gave him a provisional license which requires supervision. Now, it seems he's practicing without supervision.

Hmmm.....sounds legit already.
Now, he's in Oklahoma peddling a lovely little shot that will cure you from chronic pain. 
Oh, and that will be 300.00 .....

Dr. Mike...doesn't that sound so friendly and helpful?

No one seems to know what is in the injection. Why, in heavens name, would you EVER inject yourself with something when you don't know what's in it. This injection will cure all ailments, not just chronic pain. 

People in chronic pain are usually desperate and will try anything for relief. This is a predator that is injecting people with God knows what. He's misrepresented himself as part of the military and misrepresented EVERYTHING ELSE. He claims he was in the special forces but no one can seem to find anything about him and he was investigated about stolen valor.

It can't be substantiated but a Dr. Schrick told reporters that is a mixture of Kenelog, Vitamin B12 and dexamethasone. Oh, and it had another less exciting name: inflamation prototcol. It is very frightening to me that people will try anything without thoroughly investigating it first. If the doctor won't tell you what's in it you shouldn't be letting him inject it into your body. Look up the side effects and decide what is best for you and discuss it with your doctor. Speaking of doctors; look up yours and make sure he has an active license and is in good standing with the state medical board.

It's very sad that some people will use the name of God just to enrich themselves.

Dr. Lonergan? 

He works at the Priceless Beauty Spa.

Oh yeah....he can cure chronic pain.

And I want to be an astronaut when I grow up.

If it looks like a duck,

Sounds like a duck.

Quack.














Monday, February 8, 2016

CYMBALTA, SAVELLA AND LYRICA. THE TERRIBLE TRIO








I've always said....
it's not what they tell you....
it's what they don't tell you.


I'm as guilty as the next person. When a doctor prescribes a medicine I usually take it, however, there are a few of them that I haven't. Cymbalta and Savella were two of them. I know myself and I know that if the side effects are icky.....well, I'll quit. The problem is that we've become anesthetized to prescription medication. Again, I'm as guilty as the next person. We need to remember some of these medications are POWERFUL.

So I started looking.

I've included the sources at the bottom of this post. I was pretty amazed at what I'd found. What amazed me the most is that the FDA seemed to chide Eli Lilly (the maker of Cymbalta) about the fact that they had not designed a safe protocol for the discontinuation of the medication. They also don't tell the doctors how severe the symptoms of that discontinuation can be. 


Now, the class action lawsuits are coming out.
What? You mean you didn’t read the fine print?

Ok…we’ll settle. My bad.

You can't quit either drug cold turkey, hence my reason for not taking them. The problem as far as Cymbalta goes is that it only comes in three dosages; 20mg, 30mg and 60 mg. Plus, it is a capsule so you can't cut it in half. You are advised against opening the capsule so how do you know that you supposed to wean off slowly? Who would think to do that?

I am not coming against anyone who chooses to take Cymbalta or Savella. These medications are approved for Fibromyalgia and for anyone who has a depressive disorder. All I am saying is that people should be aware of side effects and what happens if you stop taking it. Stopping doesn't necessarily mean after weeks or months either. It can be after one dose but the longer you take it the worse the symptoms could be. 

What are the symptoms of withdrawal?
Actually it's called Cymbalta Discontinuation Syndrome.

Brain zaps that feel like an electric shock, suicidal thoughts, nausea and vomiting, headache, nightmares, diarrhea, excessive sweating, involuntary laughing or crying, tinnitus (ringing in the ears), extreme mood swings, paranoia, confusion, limb pain, fatigue, insomnia, anxiety, agitation, hypomania and seizures.

Discontinuation can be severe and extend for weeks and even months.
With Savella, there were adverse reactions during the clinical trials.

Again, I'm not coming against anyone who chooses to use these medications. Your doctor thought their use would be in your best interest. I just think all the information should be on the table. Some people may have no trouble with discontinuing these medications....others may be blindsided.

In the sources below, I also added all the information on Lyrica. Commercials make everyone think that you can take a pill and everything will work out and you'll be happy. Just for the record: I hate that commercial. I'm not one of those people that are suspicious of doctors and conventional medicine. Medications are necessary but just have all the information so you can make an informed choice.

After all....

If Eli Lilly won't tell you.......

The FDA will.......

In some archived obscure document......

Somewhere........

But I found it.

The sad part is?

The only one who will win will be the attorneys.



Sources: 

http://www.fda.gov/downloads/Advisor.../UCM172866.pdf


http://medlibrary.org/lib/rx/meds/savella-7/

                        http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/021446s013s014lbl.pdf
           


Thursday, February 4, 2016

TONMYA AND FIBROMYALGIA....MY OPINION




It's been awhile.
But now, it has a name.
Tonmya.


A year or so ago I got approached by a woman named Laura Colontrelle-Radocaj of Dian Griesel, Int'l. She asked if I'd be open speaking with Dr. Lederman who is the CEO of Tonix Pharmaceuticals. I was aware of the clinical trial of TNX102 (Tonmya) that was taking place  so I was thrilled that I had been given the opportunity.

I really believe there are subgroups of Fibromyalgia. I also think that is why Lyrica, Savella and Cymbalta (which are all FDA approved treatment for Fibromyalgia) don't work for everyone. For me, Lyrica was worse than the Fibromyalgia. I gained weight, which is death for me, and my thoughts went to a very dark place. I can't take it. There aren't a lot medications out there that are approved so something new on the horizon was good news. 

In a nutshell Tonix Pharmaceuticals is using cyclobenzaprine in new doses and formulations for treatment of Fibromyalgia and Post-Traumatic-Stress Disorder (PTSD) which are chronic central nervous system disorders. At first I wondered why Fibromyalgia and PTSD? To me, they were on opposite ends of the spectrum until Dr. Lederman gently reminded me how many cases of Fibromyalgia start with trauma. 

Mine included.

Cyclobenzaprine (Flexeril) is an FDA approved drug that treats the muscle spasms that is associated with musculoskeletal conditions. Pain managers use it quite frequently but it's difficult to take because it makes you groggy and sleepy the next day. Well, it seems that it takes two hours  to get into the bloodstream so if you take it before you go to bed it won't take effect for two hours. No wonder people are groggy in the morning! 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," and everything I've read says that this drug should not be used long term.

So why is this different? 
Flexeril is still Flexeril.
Blech.

The BESTFIT protocol (BEdtime, Sublingual, TNX102SL, as Fibromyalgia Intervention Therapy.) uses a very low dose cyclobenzaprine. The great part of using it sublingually is that it enters and leaves the bloodstream quickly. It's 2.8 mg of cyclobenzaprine in this formulation. Tonmya is currently being evaluated in the 500 person AFFIRM trial for fibromyalgia. Patients have to report a reduction in pain from the baseline after 12 weeks. It is also being evaluated for safety as well as the effectiveness of the drug. 

So far approximately 42% of the patients experienced some kind of tongue or sublingual numbness. More studies will need to be done to evaluate long term effectiveness. Also they need to study if it will interact with any of the medications currently approved for Fibromyalgia. 

This isn't some ripoff company trying to float and old drug into a new "big fix" for Fibromyalgia. This doctor had a thriving practice and then committed what he said was, "professional suicide" by going into research on a central nervous system problem like Fibromyalgia. In his opinion, non restorative sleep changes the central pain pathways and if part of that can be fixed then patients should see a reduction in pain. 

We really do need the sleep. I don't know about anyone else but it's not very often that I get refreshing sleep and I can tell a big difference on the rare occasion that I do. Another thing I found interesting was alpha wave intrusion. The new term for alpha waves is cyclic alternating pattern (CAP), type A2 and type A3. It seems that we all have alpha waves but with Fibromyalgia we have too many alpha waves and they are too frequent. This is what interrupts our sleep. 

Yes, it's Flexeril.

But, it's not the same old dosage.....

and it's used in another formulation.

I think it should be given a chance to prove itself.

Let's not jump on the bandwagon and trash it until we know.

Just sayin'..................

It could be an important piece of the puzzle.