Monday, September 15, 2014

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.......................








Thursday, September 11, 2014

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.








Tuesday, September 9, 2014

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.








Sunday, September 7, 2014

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!



Saturday, August 30, 2014

OK....SO WHAT DOES HELP...AND OTHER NONSENSE









So, if all that doesn't help...
What does help?
A wave of the magic wand.



I went through all the things that are supposed to help but don't; so, I guess I should write about things that might help

Maybe.
Kinda.
Sorta.

Point number 1: Don't call your doctor.
Most doctors will just tell you it's all in your head anyway. If your doctor doesn't believe in Fibromyalgia, it will just make it worse. (if you're in need of medical help ALWAYS call your doctor! Sarcasm, sarcasm, sarcasm.)

Point number 2: Get in bed.
Notice I didn't say get some sleep. We can try all we want but usually deep sleep doesn't come easy, however, sometimes getting in bed can feel heavenly. 

Point number 3: Don't feel guilty if you take medication.
Social Media is tough. Sometimes we are made to feel that if we take opiates we are some kind of addict or that we should be able to tough it out. Everyone has that point and it can be needed to function. If you take medication; please, don't feel guilty. If you don't need to take medication please be kind to those that do.

Point number 4: Get in the water.
Notice I didn't say shower. A wonderful lady I know pointed out an article that discusses this very subject. I always dreaded the shower on those icky days. The water would HURT. Evidently, this isn't unusual. Feeling weightless in a pool, hot tub or even the bathtub can do wonders. Plus, Dr. Frank Rice is doing research on AV shunts in our hands. People with Fibromyalgia tend to have many more of them. These also regulate internal body temperature (maybe why we are so intolerant to temperature extremes). They are influenced by estrogen which could be why more women get Fibromyalgia. 

Point number 5: Try to stay positive.
This is a tough one for me. I'm definitely NOT Little Mary Sunshine. One of my favorite sayings in the world is, "when you see the light at the end of the tunnel.....it's probably the train coming at you full speed." Hey, what do I know? Do as I say...not as I do???  I admit it. I'm the glass is half empty sort of person.

Now, if I'm REALLY being honest?

What helps when it gets real bad?

Take a bath....

Take my muscle relaxers and pain medication.

Hope they take the edge off.

Kinda.
Maybe.
Sorta.

Shuffle off to the bedroom.

Get in bed.

Turn on the TV.

Pray I go to sleep.

Pray tomorrow will be better.
















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