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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, July 12, 2013

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.  


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.  


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.


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!

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