THE TIP OF THE ICEBERG

As 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. Now, 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. 

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 are you supposed to wean off slowly?

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. I'm not one of those people that are suspicious of doctors and conventional medicine. Again, 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.

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
             

PAIN AWARENESS MONTH...TRUST ME, I'M AWARE OF IT

It's Pain Awareness month. 

One question?

When aren't we aware of it?

September has been designated as Pain Awareness Month. This is the time that various organizations and groups help the general public become aware of pain and pain management. I personally think I have a better way for people to really understand what this is like. Beat the crap out of them with a baseball bat and tell them that this is what they're going to feel like every single day. For the rest of their lives. (Alright...maybe that's a tad extreme...)

It's been a rough summer. It's been humid; more than usual it seems. You know what it seems? It seems that I say that every summer and how often have I mentioned that I don't do well when humidity sets in?  A lot. The pain hasn't let up much and sometimes my "wonderful attitude" goes in the toilet.

There are so many things that affect our bodies and weather is just one of those things. Science is divided on this but I'm not. Barometric pressure definitely has an effect on me and I'm not nuts. I can feel when the rain is coming and my hands start hurting.

And my smiley face becomes a snarl.

But, back to the pain.

Lyrica has been FDA approved for the treatment of Fibromyalgia and I can't take it. Actually, for me, it didn't help the pain all that much and it wouldn't matter to me if it did. The worst side effect is the weight gain. Weight gain puts more pressure on your body so while it may help the pain the weight gain will bring it back. Chronic pain brings its own set of issues and with the weight gain....just add a tiara.  For me, the weight gain is worse than death. I cannot handle it at all. 

Yes, I have food issues.

And right now food isn't my friend.

Growing up I was always thin. Really thin. I was the person you hated. I could, and did, eat noodles and butter and midnight and I never gained an ounce. I hovered between a size 4 and 6. I didn't matter how much or when I ate. The weight was NEVER an issue. Then, with the onset of thyroid issues and the fibromyalgia...........well.......(snarl).

Again, back to pain.

Ok, ok......I'm getting to it.

I've tried all the approved medications. Lyrica, for me, just won't happen. I'm terrified to try Cymbalta and Savella. Why? Because I am notorious for stopping medications if I don't like how I feel or the side effects get too icky. The doctor has told me, in no uncertain terms, that I'm not to stop them cold turkey and need to be weaned off slowly. Well....that did it for me. I know myself and I know I won't do it. I think I need to write a post about all the medications that have been used for our tricky little symptoms.

So....back to the pain.

Now, I try to compartmentalize my treatment and see if it spills over to all the other issues. I have muscle spasms that can be from my back injury or the fibromyalgia. I take tizanidine for that. I take it at night and it seems to help my sleep and my jumpy legs. 

For my back injury I also take a VERY low dose oxycodone. It's just enough (barely) to take the edge off the pain and allow me to function somewhat normally. (Who am I kidding? I've never been normal).

If the pain gets real bad I head for the tub. Swirling water tends to help me the most. I don't know if I just forget about it or it actually relieves the pain. All I know is that for most ailments the tub helps. If it's a cold, steam up the bathroom and just sit in there. No matter what.....head for the bath. If it's just joint stiffness I can start moving and distract myself. Moving helps the most when it's the fibro pain. If it's the back ......all bets are off.

I know I'm rambling......

It's Pain Awareness month. I guess the title says it all. I have been intensely aware of the pain lately and so I just hide. I know that isn't good but I just don't want to be the buzz kill and I don't want to answer questions about it. It isn't a good state in which to exist but I'm entrenched in it and trying to claw my way back up to the surface.

I've become the Shell answer man (for those of you old enough to remember that one!)

"Hey, mom!"

"It's real cloudy."

"How bad do you hurt today?"

"Oh, ok....should I go to the car wash?"

Yep, I'm better than a barometer.

THE MEMANTINE THEORY

I usually open with a quip.

I have no idea where to begin with this one.

No clue.

Or am I just confused?

Spanish researchers came up with an interesting hypothesis. Fibromyalgia patients have been found to have elevated glutamate in certain areas of the brain. Would a drug that works on blocking glutamate be useful as a treatment for Fibromyalgia?

Enter Memantine.

Memantine is an FDA approved drug for the treatment of moderate to severe Alzheimer's disease. It works by blocking NMDA receptors. It seems that people with Fibromyalgia have excessive activity of a neurotransmitter system called the NMDA system. The NMDA or N-Methyl-D-Aspartate receptor system has been investigated for pain, neurological disorders and seizures. These receptors play a role in the excitatory over-stimulation. The binding of both glutamate and glycine activate this receptor. Now, glutamate levels have found to be high in people with Fibromyalgia. So, if glutamate levels are high and the activity of this receptor system are on overdrive and the result of this produces an elevated level of nitric oxide in our systems then wouldn't that explain why we have different levels of pain at different places and times in our body? Plus, instead of working just on pain, wouldn't this drug also work with memory issues and cognitive function?

But, here's the thing. 

And it's the "thing" I have with a lot of drugs.

The side effects are scarier than the disease.

The common side effects are confusion, dizziness, drowsiness, headache, insomnia and agitation. This would be weird because I wouldn't know what was the drug and what was the Fibro. Less common are vomiting (that does it for me right there) anxiety, cystitis and increased libido. Ok.....how much increased????? 

You are instructed to stop it immediately if you have a cough, chest tightening, fever, trouble breathing, seizures, sudden numbness and/or hallucinations.

I'm not trying to make light of Fibromyalgia, not at all, but this sounds like something that could seriously mess you up and I wouldn't take it for the pain of Fibromyalgia.  In an MS trial it was reported to induce a "reversible" neurological impairment. This impairment was severe enough to halt the clinical trial.

This drug is also being tested for the use in anxiety, epilepsy, opioid dependence, lupus, depression, bipolar disorder, OCD, Tourette's, problem gambling, ADHD, glaucoma, tinnitus, MS, autism, migraine, ALS and Down's syndrome. Now, it seems, just add Fibromyalgia to the list.

You want to know something funny?

I've also read a pain study that has shown that dextromethorphan can ease the pain. Now, this "study" had three groups; male and female in normal control groups and then female Fibromyalgia patients. Each group had 10 people in it. I don't see this as a real big study but it did seem to imply that cough syrup could control the pain. The study said that it "significantly" controlled the pain. Let me get this straight.......if I slug down cough syrup it will control the pain?? Dextromethorphan does act as an NMDA antagonist so it kind of makes sense.

So let me get this straight......

I can take an Alzheimer's drug.....

or........

I can slug down cough syrup......

Hmmmmmm.......................

THROWBACK THURSDAY. ZIP-A-DEE-DOO-DAH!

Sometimes people think they are helping.

They offer advice.

Others think we are wimpy.

Zip it.

So in the interest of those with Fibromyalgia and/or Chronic Fatigue, I offer these suggestions.

Please do not say:

1. You don't look sick.
No, I don't look sick. If I looked like I felt I'd scare dogs and little children but thanks for telling me that I should look sick if I want to be taken seriously.

2. You should exercise more - you'd feel better.
I guess it would be o.k. if I fell asleep on the treadmill. I especially like it the next day when I can't move any part of my body due to the pain of the glorious exercise I did the day before.

3. Everybody gets tired.
Yes, everyone does get tired. Again, thanks for reminding me that you and a lot of the medical community thinks we're crazy. Just for a point of information when we rest, we don't wake up refreshed.

4. You just need to have a better attitude.
Gee, I thought I did have a good attitude. If my attitude reflected the pain it might kill you.

5. It can't be that bad.
In the same vein no, it can't be that bad. I'll just take a baseball bat and beat the crap out of you and see how you feel the next day. Live like that for years and then tell me it can't be that bad.

6. I wish I had time to take a nap too.
Yep, I'm just a whining little princess who naps and eats bon-bon's all day and pretends to be sick.

7. If you'd just get out more.
I love being locked in my ivory tower. I definitely should get out more. That makes me feel SO much better now.

8. You're just depressed.
Well, what tipped you off to that one? If you live with chronic pain and fatigue don't you think you might get a tad depressed?

9. Oh come on, just get tough.
If you only knew how tough we really are to function and deal with this illness.

and my favorite...................

10. It's all in your head.
People have had enough of the medical community making us think we're crazy. We have to go from doctor to doctor until someone believes us when we say we're sick. We've put up with so many people thinking we're either whiners or neurotics  please don't add insult to injury.

Thanks for listening.


Just as a little aside.....

It is all in our head......

It's called a central nervous system dysfunction.

YOU CAN'T SEE ME

I'm smiling.

What else can you see?

Probably nothing.

Because you can't see past it.

I wrote this a few years ago. It was true then and it's true now. 

I should probably not complain that I'm living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don't usually let people see past the smile because they'll see the real me and I hate appearing weak. I also don't want them to see what I deal with. It's a double edged sword. It's an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it's also invisible because we don't want people to judge us. We get enough of that from doctors, we are afraid we'll also get it from everyone else.

What you don't see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It's a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn't real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it's in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I'm not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn't know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I'm still making, is knowing my limitations. I've said it before and I'll say it again. I've never liked limitations. It doesn't matter if it's mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn't be. I've always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn't often, I tend to make the most of it. I know, not good. You'd think I'd be getting the hang of it by now, but I haven't. I still hate what my body has done to me.

I found my voice in blogging which is weird because I'm not real open with people. I've always been outgoing but very few ever got to see the "real" me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn't scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I've left many friends and family by the wayside. I've been able to communicate about the pain and depression. Again many things surprise me. I've also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I've had to make is in the area of control. I've always like to control the environment around me. That's a huge part of my personality. I've always felt that if I can control things then I won't get any nasty surprises. Well, I didn't say that it worked I just said I liked to operate that way! I've had to accept that I won't know what I'm dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I've had to let go and that isn't easy for me.  So many things haven't been easy and I've had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don't care whether it's physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it's something I have to learn to accept but it's that darn little word called control. I don't have it and it makes me crazy.

So it's 3 a.m. and it's another night of robbed sleep. I will try to close my eyes but I don't have high hopes. I've taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they're supposed to calm down. I'll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

I really need to learn about limitations 
Just don't apply them to speed limits.

It's Invisible Illness Awareness week.

THE SUGAR DELETION EXPERIMENTATION PROJECT

Sugar.

Sweet.

Addicting.

Crack.

I have to say that sugar is my drug of choice. I love it. I can't have too much otherwise I go into a hypoglycemic sugar crash that is terrible. There are certain things that set it off. If I would have a regular soda......the sugar glaze that is on ham......cotton candy. Definitely not good.

Then there is the gray area.

Lemon Oreos fall under this category. So does cake without a ton of icing. M&M's, Lancaster caramels and sour gummy bears. For some reason I can have these without going into a severe crash. I have no idea why. 

Here's the funny thing. I'm a food snob. I love fresh, good food. I rarely go out to dinner and if I do it better be a great restaurant. I love to cook so if I can make it better......I'd rather. My dream is Masterchef but I don't have the presentation or knife skills.

BUT.

I DIGRESS.

Food is one thing and sugar is DEFINITELY another. You'd think I'd kick it to the curb but it took one lovely lady to help me do it. Her name is Judith Westerfield and she writes a blog called Curious to the Max. I had written a post and she had commented on how bad she'd been feeling and that she was ready to kick sugar.

Was I in?

I have to admit that apprehensive wasn't even close. 

I was making a commitment and I'm a commitmentphobe. It's like taking a medicine long term. I probably wont. Anyway, knowing that it was time and that I should......I agreed. She even posted it on her blog so I was all in.

Day 1-3 I was beyond snarly. Now, let me come clean. I didn't count sugar free stuff in this little venture. My coffee has sweet and low, a sugar free vanilla powder. That and a diet coke is my caffeine hit for the morning. It doesn't count any little bit that I use in dressings or food. I gave up my nightly ritual of Oreos and sour gummy bears.

I don't usually have THAT much sugar.....(ok.....I do but I don't think I do). Again, I use a little in cooking at times and everything else is sugar free.

Oh, I forgot. 

I love ice cream.

Good ice cream.

Like McConnell's salted caramel chip.

Anyway, I gave that up too.

So.......here I am missing desperately my sugar. You'd think I'd mean a person but.....no....

You must ready Ms. Westerfields blog about the sugar shun.

She says it much better than I do.

I gave in and had my ice cream last night.......

But, hey.........

no Oreos!!

Here's the link and while you're there check out Freddie Parker CDT. (canine dog therapist)

Thanks Ms. Judith........

I'm getting there!

http://judithwesterfield.com/2014/09/06/sugar-shun-parenthetically-yours-8-steps-to-kick-sugar-cravings-to-the-curb-ouch/