New Meds AKA Reinventing the Wheel

Today is the one-month mark of when I had to go into the hospital - a day that will live in infamy for me.  How I dread ANY sort of hospitalizations because you inevitably need a year, at the minimum, to get over the experience.  You have to educate everyone who comes in contact with you about what "Chronic Fatigue Syndrome" is and what fibromyalgia is - several times a day, trying to justify your illness.  Even quantifiable things like gall bladder surgery are questioned as if you WISHED for stones and surgery.  And forget about telling the doctors that you have CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) or even fibromyalgia.  No one's heard of CFIDS and they only know fibromyaglia in the vaguest way: from the Lyrica commercials.

You're thrown into the inevitable psychiatric wastebasket where more damage is done as you try to explain what your problems are.  How, you wonder, can you explain all of what's going on with you and a 35-plus year history, in a few encounters, especially when you want to yell out "get the idiot psychiatrist away from me!" But that's the price you pay in order to continue getting your medications - you hope!  You inevitably come home from the hospital (or a new doctor) with medications switched around.  You know what the result will be because you were given this newest formula before and were taken off of them because someone inevitably thought that antidepressants were absolutely, POSITIVELY, the wrong medication cocktail.

Everyone gets in on the action with psychiatrists muscling their way in. They bully. Worse, they try to play tricks on you in order to catch you in what they are sure are lies, lying to you in the first place when they play mind games - or use reverse psychology, or any number of their other techniques which are so obvious that anyone with an IQ of 90 or above can tell.  (And yes, I'm telling you something everyone knows: IQ's of 100 are average so my expectations are quite, quite low.)  Everyone is convinced that what you are describing is all psychological. And are they even really doctors???  Let's just say that were I about to deliver a baby in a stuck elevator, I'd hope that I had a cop with me or even a taxi cab driver, but not a psychiatrist!

I've been put on Cymbalta (SNRI) this time. The fatigue is crushing, not to mention that I have a few other new "goodies" (my worsened vertigo comes to mind).  So, after being taken off antidepressants for many, many years for the "lessening of pain," by educated neurologists who understand CFIDS and ME and being taken off antidepressants as many times over the years by psychiatrists who aren't even versed in cardiology, I'm completely frustrated.  I know what the results will be.  Desperate to play real doctor, they (psychiatrists) unfortunately feel that they can cure that high cholesterol count when they see blood tests coming back. Eons ago, my cardiologist was so upset by this that he said, "when will they stay with psychiatry and leave cardiac 'problems' alone?"  I'm back on an antidepressant yet again, a new one.  I've been on seemingly "everything" beginning in 1988 with Elavil to Pamelor, to Effexor, Remeron, Wellbutrin (never indicated for anyone with migraines plus putting on at least 30 pounds in a very short time), Prozac, to Zoloft and everything in between. 

Darn!  I just looked up which other antidepressants I've taken in the past and saw that one of the medications being given to me for my severe, almost fatal insomnia is Desyrel (trazadone).  Oh no!  In their dreams - though, unfortunately, not mine.  I'm not having sleep and, thus, dreams in my life!  We've been this route before, many times.  And that noise you're hearing is me banging my head on the desk! Boom!  Boom!  Boom! 

When will they learn that my insomnia is caused by damage to the limbic system in my brain? It's much like a faulty switch that you need to jiggle. The medications that help sleep do not help mine.  The switch needs something more powerful - what works for me has not yet been invented.

I know where this will end but I'm too exhausted and brain-fogged to protest or even ask halfway intelligent questions.  My brain has sustained much damage: I was even tested for brain waves at one point to see if there was any brain activity left since I was in the ICU on a ventilator for so long.  I remember almost nothing. Some things are coming back slowly.

But I had to laugh yesterday when I heard that once off the ventilator - yet not coming to for too many days - an odd thing happened.  When they were afraid that I was "gone," the nurse was puzzled by my fingers tap, tap, tapping away.  Hubs was asked if I was trying to play the piano.  Good guess, but really, not good enough. "No," hubs supposedly answered.  I was busy typing - writing posts for my blog.  So you see, my lovelies, you were never far from my mind - or what I had back then.

My question?  (Oh, I have so many I hardly know where to begin but we're going for "short.") Is anyone taking Cymbalta or has anyone taken it in the past?  If you don't mind sharing, what were your experiences with it? In fact, what have YOUR experiences been with antidepressants in general.  Did you get help with your migraines, sleep, pain, fatigue or any of the gazillion problems that we all experience?  I'd love to hear from you.

As always, I hope everyone is feeling their best, only better (fibro logic never fails!)  Ciao and paka.


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Losing Weight: Part 1, The Reasons

Thanksgiving at a friend's home: you'd think my kids had lived an "Oliver" life!

There seem to be dozens of ways to gain weight if you're a person who suffers from CFIDS/ME/CFS and/or fibromyalgia and I do believe that I've had the dubious honor of having gained for each one of the reasons at one time or another.  It's a real problem because, let's face it, the way we look DOES affect the way we feel about ourselves.  No matter how much we tell ourselves that all we want in life is to be healthy, there IS the little part that we quietly add, "and to be a normal weight."  It's not surprising because before we became sick, we usually WERE at a decent weight.  

Today I'll just pick out four reasons why we often gain weight.  Some I've gone into before, but others are new to this blog.  Tomorrow I'll post a few tips that have helped me with the ways I try to lose weight, an ever-increasing list.  But today, some of the "causes."  Remember: knowledge (or acknowledgement) is power!

• Insomnia.  If you don't get enough sleep, your hormones go all out of wack and you start to gain weight like crazy.  For more on this, see the post I wrote about this here.
• Medication.  Despite huge vigilance, a few years ago I was on entirely too many medications (around 50!) and we were able to cut the number down, as well as the dosages.  It was hard work and sometimes I think I would do well to go back to a few but when I think this, I also think, "at what price?"  I do have a couple that I may need to start back on but will be talking to my GP about this because I'm not sure of the benefits vs. happiness factor with my weight.  "Proper weight" is not just about looking good - were it only that easy.  It also gives us a bit (ha!) of a self-esteem problem that, like it or not, does accompany the weight issue.  And let's face it, it's hard to lug around extra poundage. 
• Overdoing it.  Every single time that I overdo it - and it doesn't take much to get into that state - my appetite soars and the poundage comes on in spades.  Just sitting downstairs in the kitchen as preparations went on around me on Thanksgiving and then sitting at the table for dinner was way more than my body could realistically handle.  I've not weighed myself since this out-of-control eating started and as a result, I know I've gained at least 10 pounds, if not more.  I've more or less given up until tomorrow since it's hubby's birthday today and I knew that stopping the eating and then "starting again" with his birthday again would just be too much.  So, tomorrow I start to give myself the pep talks and maybe by Wednesday I can start those first three days that are so hard to get through as you're trying to get back to "eating right."  See this post for more on the "eating right" and losing weight the healthy way right here.
• Stress.  We had the painters in the house for two weeks and then there was all that running to the ER and testing and that all proved to be too stressful, which led me to overeating - a real understatement.  Now I have not only the holiday weight to deal with, but all the stress-induced weight gain of something I had a lot of trouble dealing with.  It had to be done.  Now the weight has to be dealt with.  End of excuses or lamenting from and for me!  Get with the program, self! (Unfortunately the work is not completed yet.  I'll have to come up with some sort of way to deal with this better!)

And yes!  Make sure you check with your doctor to see if there is something new going on with your body that is causing the weight gain or lack of weight loss. You may need to explore the possibility that you've developed a new issue that needs to be addressed (like me when my weight went super wacko and it was because of the hypothyroidism) or if there is a medication which you might no longer need or can take in a lesser dosage.  

Weight is the bane of most women, especially in the States.  If you've had the misfortune to add medical conditions, things get that much harder.  Some medications I know make it harder for me with the weight but my doctors and I feel that I have no choice but to continue on those medications.  I try to work around the meds, but that's not easy.  Remember that foremost is your health.  THEN establish the weight which you are comfortable to live with, but be realistic about the number.  

Finally, remember that body image is not always right: we are often our worst enemies and think we look much worse than we actually do.  

And that's it for today.  I hope everyone's feeling their best, only better.  Ciao and paka!