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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, June 28, 2013

Friday Tidbits: The Necessity for a Real Doctor


Let's face it.  We with fibromyalgia and/or CFIDS/ME/CFS are complex and have very complicated medical problems. That being the case, we need real medical help and advice from competent and caring doctors. Sound obvious?

Well, not necessarily.  How many of you have made an appointment to see a doctor only to be met by a physician's assistant (PA) or nurse practitioner (NP) instead of the doctor?  

There appears to be a disturbing trend in medicine these days which may possibly be OK for patients with simple problems but absolutely unacceptable for patients who suffer from CFIDS/ME/CFS and fibromyalgia where even the experts differ as to optimal treatment.  I'm not going to go into how this trend began and seems to have overtaken medical care in this country.  But I did want to warn you that if it hasn't happened to you already, it may very well happen to you in the future.  

So, if you don't mind, here are some survival tips to help you navigate the world of modern American medicine:
  • When making an appointment to see a doctor for the first time, make sure you specify that you do not want to seen and treated by either a PA or an NP but the doctor him or herself.  You always want to ask how much time the actual doctor will spend with you, discussing all the relevant problems you believe are important and which are controlling your life. 
  • In most states PA's and NP's need to be supervised by real doctors.  All too often this does not happen in the strictest sense so make sure you have sufficient face time with the actual doctor to insure that your problems are considered seriously and appropriate treatment is initiated.  You need to see the doctor each and every time. We are just too complicated.  Our conditions are in a constant state of flux and the doctor needs to be aware of our condition at each visit.
  • Remember, you and your insurance company are being billed for a doctor visit.  If you do not spend sufficient time with the doctor you are being cheated and your insurance company is being defrauded.

This is very strong language but it is what it is.  Sometimes the truth really hurts. However, this is not the time to be squeamish or excessively polite.  There is simply too much at stake.  

The medications which are commonly used to treat our problems are difficult to prescribe in the first place. Furthermore, they can have numerous, as well as serious, side effects which PA's and NP's are simply not qualified to treat, nor do they have the depth of experience and training to recognize and appreciate many of these problems.  

This evening, I was watching TV with hubs when two commercials for "brain" meds touted their effectiveness during the evening news half hour.  I think you'd have to be living under a rock if you've not seen these commercials.  They mentioned such horrible side effects (at incredible speed) as suicidal ideation and suicidal actions as well as some disturbing side effects, such as weight gain, swelling of the extremities.  Well, the side effects are so numerous that it might be easier to add from Lyrica's website just some of the admitted side effects and I quote:
"These changes may include new or worsening depression, anxiety, restlessness, trouble sleeping, panic attacks, anger, irritability, agitation, aggression, dangerous impulses or violence, or extreme increases in activity or talking.  If you have suicidal thoughts or actions, do not stop LYRICA without first talking to your doctor."  -from Lyrica.com
We don't expect flight attendants to pilot a plane do we?  Do you honestly think PA's and NP's are prepared for incredibly complicated patients who are taking some mighty tricky medications?  I just "loved" it when the "real" person in the commercial was described as having gone to a "medical professional" (code for PA's and NP's) yet when it came to having these dangerous side effects we were told to go to a doctor!  Yes, a doctor we may not have seen in the first place?  

Don't be fooled, get real medical advice from a doctor and settle for no less. 

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


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