In the ER Again: the Mystery Continues

No...it just comes from CFIDS now! 

I was on such a wonderful roll last week with finally getting back in action and writing posts.  But after this weekend, I feel as if getting back to square one would be an improvement on things.  Always first with the bad news in order to get it out of the way: I ended up in the ER on Saturday for multiple problems. The good news: I didn't need to go there in an ambulance!  Glory be: I almost feel as if I were letting the neighbors down by not having provided them with some entertainment - but then I remember we all have cable.   

Incredibly, the hospital staff was polite, concerned and ran many tests.  Perhaps it helped that my normal BP at home on bed rest runs a high of up to 90/70 but in pain at 120/80 (as documented by the hospital computer, yay!) yet in the ER it was a whopping 151/90.  I was immediately given medication for nausea. When I got to the point that my pain was so severe that I couldn't hold back the tears and asked for pain medication, they  immediately gave me IV pain meds which were documented as working.  Unfortunately, for the first time ever, the Demerol didn't touch the pain. A couple of hours later, another dose was given and I felt relief for a moment then nothing. This scared me. I don't like to think that I'm getting worse, overall, in my CFS/ME saga. 

After much testing we were able to establish that I wasn't dying - or not anytime soon. We were lucky on the one hand to find "nothing."  However, we were still stuck with most of the same symptoms, some getting worse, some remaining the same, and only one better but that's because I'm on complete and total bed rest. 

Ah, but I'm missing the "why" I went to the ER in the first place!  How foolish of me. OK, now get this. I do hope those of you not ill with Chronic Fatigue Syndrome and/or fibromyalgia are sitting down and those of you who are ill, are lying down.  We don't want anyone passing out because of my earth-shattering news.  (Yes, I do hope that you know this is meant to be humorous and not a case of being totally self-absorbed!)  So, drums and trumpets, please!

I got so bloated and swollen that I was afraid I was "getting" anasarca again. Those of you not familiar with the term, don't feel badly. I think you really only know the term if  you, or a close loved one, has had it. Even most of the staff at the hospital weren't familiar with the term and I had to keep repeating the word as I was asked, "Ana-what?"  

Basically, anasarca is generalized massive edema, a  fluid build-up in the tissues. It differs from regular edema in that the person gets extremely swollen all over.  It's also most common in patients with heart failure, renal failure and those who are extremely ill. 

Yeah, not fun and yeah, a bit scary - especially when I was told that I had to get two blood transfusions a couple of years ago.  There was fluid around all my vital organs: the heart, the lungs and so forth - pretty heady stuff.  I'd blown up like the Pillsbury Doughboy in less than three days, putting on 50 lbs in that amount of time and wouldn't stop accumulating fluid, on death's door, literally, as all my organs started to shut down. However, after the transfusions, it was quickly under control and I had water leaking out of every part of me that can leak, for months - including my ears.

He was much cuter than me!

Well, I've been swollen and bloated.  I actually took pictures of my feet but they are just too gross to put up. (See, I do have some self-restraint!)  In fact, I couldn't find anything in the closet that would fit, finally hauling out a long dress which was all stretch, so tight it made me look like a cheap hooker.  When I tried to find shoes hubs suggested, "just put your Uggs on!" and I croaked out "are you nuts?"  After trying on about ten pairs of shoes (how I wish I were exaggerating) I went with the Uggs in the back of the closet.  Hubs had to haul them out himself since my swollen body couldn't do much bending and we had trouble getting those on! In the ER I was so embarrassed that I told the doctor that I wasn't actually crazy - that Uggs were created in Australia so that those on the sandy beaches of Sydney would be more comfortable playing volleyball.  She looked at me like I was nuts - and who could blame her?  I don't think her opinion of me changed much when I asked if her last name was Hungarian.  Vhaaaaattt, folks?  It's a legitimate question.  I like to know these things. I'm always curious.

Back to the why I was there. I was so happy that someone finally knew what anasarca was.  That made the doc OK in my book.  My other symptoms were heavy, profuse sweating - like turning-off-the-shower-before-the-towel wet.  A migraine yet again.  And great numbness in my left side affecting ear down through arms and hands, the left leg and foot, getting worse every day.  An EKG was run, blood taken, urine analysis, x-ray ... all of it. Nothing was found to explain the symptoms, though much was ruled out.

So, this was the bad news in the sense that I was stuck without a diagnosis, but it was nonetheless reassuring in the sense that an ER is there to rule out the stuff that will make you drop dead immediately.  (Not too blunt, am I?) The stuff that is chronic really should be explored by a physician who knows you and if he can't find out what's wrong, then he sends you on to a specialist. That's how the system works and as long as everyone is playing by the rules, I'm fine.  I was greatly relieved that I didn't have pneumonia. (Whoops: I didn't mention the congestion, etc., did I?  Well, too much going on!)  I was relieved I wasn't in the midst of a heart attack.  I may have seemed like a hypochondriac but that episode of having pneumonia for two months last year and discovering it only because of a routine chest x-ray before surgery kind of made me realize that I needed to get to the bottom of things sooner rather than later. 

So, where do we stand now?  My rheumy thinks the sweating may be something "subtle."  I wanted to know: in what world is sweating so profusely-that-you're-pouring-down-water-and-can't-move-in-bed-because-you're-so frozen and feel as-if-your-guts-are-falling-out and finally resort to pain pills for something that isn't pain per se, but is just feeling like you-might-die-and-very-much-wish-you-could, be normal or "subtle."   Well, it may be that I'm in withdrawal from the Cybalta and/or the trazadone. 

Yes, it was my decision to get off the Cybalta without tapering. (See this post for more on my Cymbalta adventure.)  We all agreed that I hadn't been on it long enough to have things get too tough - though due to weird circumstances I had taken it longer than I wanted. My doctors observed that I don't appear to have an "addictive personality."  That is, I've never had any withdrawal from any other medications over the past 26 years - I'd started on medications only after I'd been officially diagnosed with CFIDS and fibromyalgia, therefore I write 25 and not 37 years. And so after discussing the mechanisms of how Cymbalta and trazadone tapering off works differently form the way nicotine and opioid withdrawal might work, if I felt OK with stopping suddenly, to go for it. I don't like to draw things out and went off cigarettes cold turkey without any problems after smoking for a few years.  (Do I sound defensive if I say do you have any idea how much reading and writing is done as an English literature student?  LOL!)  I took up smoking once my kids were older and then again stopped cold turkey almost three years ago and had no problems - other than more pain in general that still hasn't stopped.  But the smoking is another story.  I've never had opioid withdrawal at all, knock on wood.

At any rate, yesterday was truly hell and I hope that I'm over the worst of it.  I slept last night after a dreadfully long day full of severe nausea, lessening numbness, moderate migraine and  sweats out the wazoo - my bedding was more drenched than ever, something I thought to be impossible.

My rheumy said that we can all hope that it's withdrawal symptoms and not anything more "serious," so I'll hold out for a bit longer.  Hallelujah for the no sweats upon waking up this morning, just a bit this morning with sweats every once in a while which I can take.  The shaking is gone for the most part.  No migraine, only a bit of a headache that I can tolerate.  My hands are only slightly swollen. Yeehaw!

I also want to know in what world is opioids considered addictive and Cymbalta and other such medications not? But that's for another post.

Do you agree with my rheumy and think what I'm going through now might be withdrawal from the Cymbalta and trazadone?  

As always, hoping everyone out there is feeling their best, only better!  Ciao and paka!



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Answers Found in the Oddest Ways

The Original Clarence

Just after Thanksgiving, I had a freak accident which resulted in two surgeries for acute compartment syndrome and me almost losing my arm and hand, and indeed my life.  I'm still not completely sure what happened - though I DO know that it had to do with complications due to the CFIDS/ME/CFS and fibromyalgia - since  hubby and my daughter have found it almost impossible to discuss, much less fill in the blanks.

The first memory I have of the whole incident is well into the second week of December, though I'm told I wouldn't stop talking, and evidently spent a lot of time speaking in French, of all things - a language I don't even know, other than the tiny bit recalled from high school, eons ago - and when I still had a functioning brain.  Even back then I was not the most talented in my attempts at the language.

Over the last few years, I've often thought that my guardian angel needs a name, especially after so many near-misses with me, but this incident took the cake.  So he's now called "Clarence," the name of the angel-in-training in "It's a Wonderful Life."  Coincidence?  I'm not sure, but "Clarence" it is. This near-death experience included near-kidney failure, fluid around all of my organs, near pancreatitis (jury's still out on that one) and a 50-lb weight gain within just a few days from the massive fast-flowing IV's and numerous other complications of which I'm blissfully unaware. I ended up looking remarkedly like the Pillsbury Doughboy and moving about as successfully as the poor tyke.  Luckily things started to turn around once they gave me a couple of blood transfusions, something I really didn't particularly want since I had a near-death experience with that back in '79. But there was no choice, really. The timing was right for oh so many things, a sort of "perfect storm."

I'd had the flu since before the darn accident and though I normally run a fever a couple of times a day, this was way beyond even MY norm. At one point, out of desperation, I started squirting water on my face. Yes, I know there are those who make fun of paying good money for water-in-a-can but pouring water in a plastic bottle with no aerosol accomplishes nothing and since I really have so little carbon foot printing, I figured, I'm due a few points.

I had a few days when my eyes burned a lot and suddenly I realized it had been ages since my eyes were even mildly dry.  I couldn't figure out the reason, but I was happy since no amount of eye drops have ever helped.  My (old) eye doctor could never understand it and kept giving me tips, none of which worked, frustrating all.   I became almost an obsession, each doctor getting hung up on this tiny piece of minutiae in the grand scheme of things. I actually thought about trying the eye drops advertised on TV, usually during the evening news, but thought that the woman had really weird eyes...no thank you, I have enough problems.

But today I saw another person on that commercial and backed up my TV to hear her spiel. Well, actually I wanted to see how crazy HER eyes looked.  I'd hoped they'd tweaked the formula.  As I listened to the woman doctor talking, I heard a word which went "Ping!" in my brain.  She talked about the inflammatory process of the eye and why the eyes can become so dry.

BINGO!  I'd been describing my eyes as hard as marbles, which no amount of drops could penetrate. Well, that's what this product is, an anti-inflammatory going right to the spot.

I've been on an anti-inflammatory since my compartment syndrome surgeries. And all this time I've been forcing myself to drink a good amount of water, down from the usual gallon or more a day I normally crave, which drives hubby up the proverbial wall, with him "threatening" to set up a faucet above my bed. 
What kind of CFIDS'er and Fibro was I?  We all seem to walk around carrying water.  In the beginning, CFIDS and Fibro docs caught on quickly that those patients holding onto their water bottles for dear life were the ones who had CFIDS and/or fibro. They knew our diagnoses before even talking to us as they noticed our red eyes (from dryness), along with chapped lips, and the inside of our mouths sticking to our teeth, making any discussion that much harder.

In other words, my eyes were inflamed to the point where no amount of drops put into them could penetrate and do any good. The same with the dry mouth - so inflamed that the thirst was never quenched.  Now with the anti-inflammatory, it appears that the moisture is getting through. The red eyes seem to be disappearing. Lip balm is actually working. 

Yee-ha!  So, one puzzle out of how many hundreds has been answered?  Clarence, you old rascal, you did GOOD! ;)  Bring on that mascara!