Checking In & Updates

HELP!

A very quick "hi" since I feel I'm neglecting quite a few friends out there.  Oh good grief, I've taken my night meds so I really shouldn't be writing.  I KNOW I'll regret it in the morning.  I'll be upset and think, "your brain told you not to go there! Why did you do it?"  Well, it seemed like a good thing at the time - that'll be my answer to myself and hopefully things won't be too bad.  (Right! Huh!)

Also, I'm beginning to realize my posts don't need to be earth-shattering info all the time (took me long enough!), that I don't need to cram every thought I've had into one long reading, and furthermore, that they do not all need to have a huge purpose with life lessons thrown in.  In other words, I guess I need to loosen up.  Just one problem: I'm not a person who can loosen up, ever, much as I've always tried!  Ask my family. Ask anyone who's ever worked on me from doctors to masseuses to phlebotomists to those who know me well. It just doesn't happen.

But to catch up those who aren't on Twitter, you've sort of missed a few "adventures" of this spoonie who is really getting ticked off with the complications from ME/CFIDS/CFS and fibromyalgia.  Last we "spoke" I'd finally had "the works" done (hair, lashes, brows). Unfortunately, I had to stop by one of our local hospitals for an X-ray after our big day out in order to see what's going on with the painful and limited motion in my left shoulder. Turns out that I'd somehow managed to mess up my rotator cuff.   (See this link for more on what great things happened that day!)

I'm hoping to bring us up to date because it's another thing I can laugh about...well, sorta.  But there are a whole bunch of things I'd like to talk about so let's pretend this is a "Friday Tidbits" with bullet points.  I'm going to tease you a bit.  These bullet points will serve as a reminder of what I want to talk about this week. Yes, folks, I'm going to try mighty hard to get back to posting on a more regular and frequent basis.  I must get away from the getting sick and hospitalized thing.  Uhhhhh..... My plan - the stories behind the following:

• Yes, ladies and gents, you may have realized why I'd gone MIA again.  It was yet another hospitalization!  
  As I laid in pain, nauseated, I have to admit that shallow me was ever so thrilled that I happened to take a bath and wash my hair before we made the ER run.  More on this later - both medical issues and "shallow" ones as well.  In fact, I did manage a very rudimentary mani while in the hospital.  More on this later. Standards must be kept!
• MY new theories about what's going on.  Well, perhaps not what is going on, but a possibility of why it's going on....
• And how could we have Thanksgiving without my addressing food?  There's a lot here.  Also, if I can get my act together I'd also like to occasionally give you a few recipes or food ideas which keep me going.  I don't know about you, but I can never decide what I want to eat, if I should eat and so forth. So, recipes and ideas, might be coming down the pike.
• I've a few more ideas for what to add to your prepared hospital (or travel) bag.  I realized I needed these additions the hard way.  
• What have I been reading?  Not much, mind you, but I'm enjoying what I've discovered.
• I can't believe I'm going to say this but...for the first time since I was a elementary school girl, I'm going to make a few real thought-out New Year resolutions. (I can't wait to see the backside of 2013!)  Instead of just grabbing the first couple of ideas that pop into my head at the last minute, I'm going to give this some real thought.  I think I have one badly needed resolution figured out which will help others.  We can even egg each other on support each other with this.
• Making a list of what makes me happy and puts me in a good mood - and why I need this list.  (It's a must!)
• Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)
• Why I need to work hard on making changes which will put me in a mood light enough to really have no problems saying things which I'm grateful for at next year's Thanksgiving table.  I know.  I hate to sound ungrateful but I'm putting this in at the moment because I know that there are too many of us out there who have problems coping with the holidays - and I wouldn't want anyone to think that they're alone in the not greatest of mood mode!  (Experience here!)

These are just a few of the topics I hope to discuss in the next few days/weeks.  Some have to do with the hospitalizations (the one this week and the one just prior) and the bit of brainwashing that goes on.  Or as I like to call it, "propaganda." 

I'm praying that my health allows me to follow through with that which I want to do. Following through and staying busy in general: now THAT always puts me in the best of moods! 

As always, I hope everyone's doing their very best - only better!  Ciao and paka.


(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Friday Tidbits: "Paradoxical" Reactions to Meds

My favorite gal: somewhere between childhood and adulthood on the monument to Alice in Wonderland.

One of the most curious and mysterious medication effects I've encountered is how Ritalin affects the nervous systems of children so much differently than those of adults.  Ritalin is famous (or infamous) as a frequently prescribed medication for ADD/ADHD in children because it tends to have a calming effect on the immature central nervous system.  Yet in adults it has a stimulatory effect, often helping with depression and fatigue.  

What's going on here?  Clearly, the immature brain and the mature brain are affected much differently by the same medication. But when does the switch, from one type of brain to another, occur?  No one really knows, but obviously, it happens.  

Patients with CFIDS/ME/CFS and fibromyalgia often have dysfunction of the central nervous system which causes such problems as difficulty concentrating, memory loss, and/or difficulties in "switching gears" from one task to another.  For example, when interrupted it's incredibly difficult for some of these patients to get back on track and resume the original task at hand. (Understatement, anyone?)

I've often noticed, in myself as well as in others, that medications designed for a particular effect have much different properties in patients with CFIDS/fibro.  Many years ago, sleeping medications actually kept me awake - the opposite of the desired effect. This is what doctors call a "paradoxical effect" of the medication. Why this happens is unclear.  However, I have a few thoughts on this subject.  (And seriously, would you expect less?)

As most of us already know, before the FDA approves a medication for sale to the public at large, it has to review clinical trials performed by the pharmaceutical companies. These often involve two or three thousand people and if a medication is safe and effective, for a particular problem, it gets approval. Once approved, however, it can be prescribed for patients with more than the one problem it was designed to treat.  

However. 

Typically, those medications tested by the pharmaceutical companies are given to healthy people who only suffer from one medical problem.  But once it is approved, the medication is often prescribed for patients who are far more complex than the original test subjects.  Furthermore, complicating the issue is that the studies are usually conducted on subjects of European ancestry.  These are just two reasons why new side effects are discovered once the medications are approved and used by tens of thousands of patients.  This may also go a long way in explaining why my mom, an Eastern European, has had incredibly horrid luck - in fact, been disasterously unlucky - with any medication she's taken since she came to the States in 1950.  

Therefore.

We shouldn't be surprised if some medications have undesired - and even the opposite - effect when given to complicated patients.  We with CFIDS and fibro know this from experience and from discussing our problems with fellow sufferers.  I'm not so sure if this is accepted by the medical community at large - though my rheumy/immunologist sees this in his practice every day. 

Have any of you been greeted with skepticism when you reported that a medication either didn't work or had an unreported side effect?  Were you treated as if you were making it up or had some sort of mental problem because you did not have the desired effect which was clearly shown to be obtainable by the studies submitted to the FDA?  But of course you have!  If not, consider yourself extremely lucky!

Bottom line.

This is why meds too often work differently on those with CFIDS/fibro.  Initially, they weren't tested on people like "us."  The anti-depressants, the pain meds, the sedatives - they were all tested on people with one sort of problem only - and we all know that the CFIDS/fibro world is a heck of lot more complicated than the "norm." Don't get upset or surprised if the meds that are seen on TV or which your doctor prescribed don't work the way they are "supposed" to.  Keep trying different meds until you find what works for you! 

Our brains may not be as immature as children's brains but they aren't totally normal either.  A cursory look at the recent studies regarding brain function - fMRI, brain SPECT scan - in CFIDS/fibro attest to that. Unfortunately, no one has yet understood what this means, but then again, as I wrote in another post, our brains in general are the "final frontier" as described by many, including Nobel laureate, Dr. Eric Kandel.

Hence. 

Herein lies the problem I had with Cymbalta - sorry, I know I shouldn't bring up the "C" word again.  But those sorts of meds were made for people with primary depression and it was only a side effect that pain seemed to be more tolerable, thus getting the approval by the FDA for pain and fibromyalgia.  Don't be upset when you see you're not helped by these or any other meds.  Again, tell your doctor what is going on and go with something new until you find that magic bullet - or bullets - that work for YOU, regardless of what medical problems you may have.

As always, I hope everyone is doing their very best - only better.  Safe weekend, y'all!  Ciao and paka!



(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)