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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 21, 2013

Friday Tidbits: Will a Rosary Be Needed?


This is, I hope, the last of my posts covering my adventure into Cymbalta-land.  What a journey it's been.  I've purposely not written much about what I've gone through because I've not wanted to go on and on about how miserable I've been and bore people to death in the process.  But now a part of me regrets that I didn't write about it more often since it really was one of the worst medicines foisted on me, ever.  (Does "foists" make sense?  I hope so!)  I regret it now because in many ways I find that this blog is a pretty good reminder of what I've done and in reading back older posts, I'm able to assess where I've been, how I'm doing now compared to before. 

With trepidation I want to say that I think the worst of the Cymbalta experience is over.  I sincerely hope so at least.  The sweating is greatly diminished though it's still there after any sort of exertion, including walking from my bed to my closet - a silly example.  The sweats really reminded me of what I've always heard malaria is like, minus the freezing cold part - although I had the freezing part as well.  I've had three cases of pneumonia -  two which were almost fatal - and have gone through extremely annoying, though normal, female hot flashes and yet never experienced sweats as badly as what I went through with the withdrawal from Cymbalta.  

The sudden feelings of anxiety coming out of nowhere peaked a couple of days ago.  I was going absolutely crazy with them.  By Wednesday I'd had enough of that "out-of-nowhere" anxiety that I'd only felt occasionally - and not anywhere as badly before - wondering where my desperation would lead me.  The part of me that could think wondered when I'd last felt this anxious.  Was it when I studied for my Oral exam for my Master's degree - when professors could ask any question they wanted relating to British and American literature, much of their histories and so forth?  That was anxiety.  But nah...I hasn't been nearly as "nervous."  

How about when I worried about my daughter getting accepted to her number one pick of universities to go to and had a phone interview?  That was a great picture that she's YET to forgive me for.  I - who do not drink - made myself a Kahlua and Cream, lit up a cigarette and grabbed a rosary (I'm not even Catholic!) and started saying the rosary.  True story. Would I lie?  

No, I can't think of anything that caused the kind of anxiety and heart racing I've felt these last few weeks thanks to the Cymbalta.  Plus, this lasted weeks, with no end in sight.  Wait a moment.  I now remember a possible anxiety-ridden contender: when I walked down the aisle to get married, anxious because I don't like to be the center of attention.  Yep. That's a good one.  "Future" hubs had to hold me up for most of the ceremony as I almost passed out.  Now that's anxiety!

Yes, indeedy.  That was a definite contender.  Now can you imagine feeling like that for weeks?  It came on every day, several times a day, with no warning.  I don't ever want to go through that again, thank you very much.  It is, perhaps, one reason why hubs and I have been married for so long: we can't imagine ever going through that sort of stress again! 

I was dealing with stress so poorly that I wondered if I didn't need to have my cortizol levels checked - again. (Appropriately, I wrote about cortizol levels last week so you may want to check out that post.)  No, I most certainly wasn't dealing with any sort of stress in a good way at all.

Continuing on: my personality transplant has gone away for the most part. I'm still not back to whatever "me" is, but I'm closer. The part that has me worried, however, is that I still don't like whatever is left of the transplanted me and hope that I go back to the old me - and soon.  

Perhaps worst: I'm still not back to laughing.  I had a chuckle the other day and hubs was ridiculously delighted.  Poor guy: it doesn't take much to make him happy.  I'm a harder audience.  Plus, I have to live with me more than he does.  He gets to go to work.  (Lucky Duck!)

Pain is still the same - pre, during and after Cymbalta.  The acid reflex is getting majorly better thanks to the melatonin.  Today I only needed one Tums, a definite improvement.  

The depression that came on with the Cymbalta was the worst I've ever felt.  The high BP.  The swelling - so bad that I had to go to the ER to eliminate any "serious" problems.  The blood sugar dropping in an instant. The out-of-control eating.  The weight gain.

Oh good heavens. I don't even remember all the things that went majorly wrong with my body because really, it's a sanity device.  Your body simply can't register all the problems at once because it is just too much.  It's all a matter of the squeaky wheel getting the most attention.  

The awful bit is that I have so far to go, still.  And I am angry about that.  I am still majorly ticked off with the prescribing doctor because his theory was that I wouldn't be in so much pain ... because I wouldn't care about the pain enough for me to "complain."  After all, he took Cymbalta.  I should have known to run for the hills once I was given that sweet morsel of information - known that he wasn't all there!  What kind of crazy thinking is that: not to care about my pain enough to complain?  Just one thought: did he not learn in medical school that pain is a good indicator that you're not doing well?  Is it not Mother Nature's way of protecting us? I got to the point where I didn't care about anyone or anything at all.  Is that living?  Is that sane?

Heaven protect us from crazy - and arrogant - doctors who think that they know how to fix us.  It's completely nuts.  They don't believe we are ill.  They think that a few sessions (or not so few, but "only") with a mental health professional will talk us out of our illness.  We have, after all, imagined it completely, as they constantly remind us.

When I was in the hospital, one of the "new" doctors wanted to know, more than once, "what bozo put you on ---" fill in the blank.  He literally used the word "bozo."  I'd not heard that word since Soupy Sales used that word.  And how disrespectful is that kind of questioning?

Having been raised in the South where we were taught manners and having been to a Catholic school where we had manners forced upon us, I was too polite to say, why don't you get board-certified in internal medicine, do a two-year fellowship in rheumatology, treat patients for 30 plus years, be past president as well as board member, etc, of a medical pain academy and then get back to me?  Testify in front of congress - as did my neurologist - and then get back to me.  Look at my spinal fluid and then get back to me.  Become a decent human being, nix the personality disorder you have, and then get back to me.

That blank for "What bozo put you on --?" was at various times "steroids," "xanax," "ritalin," and a host of medicines I've long forgotten but he had at hand because of hospital computers.  

Why did I get these meds?  Because at the time these were the wisest theories and hopes - at a time when CFIDS/ME/CFS and fibromyalia had just been recognized and not yet understood - not that these are understood now.  And at every step, everything I'd ever been given was explored - at length - as to whether or not it was a useful and logical progression, whether the pros outweighed the cons.  I can't even begin to tell you how many medications were explored and discarded because they were just too high a risk.  But never, ever, was I bullied into taking medications like I was bullied into taking the Cymbalta.  

I'd like to know that I've gone through this nightmare for a reason.  Consequently, I've wrecked my brains trying to find the bright spot in all of this.  What have I taken away from this experience?

I know that I will not allow myself to be bullied again without a fight.  I've had enough of it.  And if they can't respect me for what I am - a person with real biomarkers for CFIDS and fibromyalgia - then they can kiss my grits.  At least respect me for my old age.  

Yep.  I'm ticked.  I'm beyond angry. I hope that part of my anger doesn't leave me because I need it in order to be protected.  And I need to ask myself this as well: perhaps I'm angry because I should have known better? I've been bullied into believing that I need to see guidance counselors, psychologists and psychiatrists practically since the day I was diagnosed with CFIDS/ME/CFS and fibromyalgia - since around 1986.  I don't know why I keep giving these bozos - that is a good word after all! - a chance to deal with me.  I can unequivocally say that they always end up doing more harm than good.  At least in the past it's been more "psychological" harm than "psychological" good.  Now they've managed to do much more - adding physical harm.  Shame on them - but shame on me for having allowed that bullying!  

Furthermore, I do hope that I can get back to laughing.  This is a gift I was given and I've always been thankful for it.  I pray I haven't lost it forever.

Whew.  That felt good!  Thanks for allowing me to vent - I really needed that.  Hopefully a rosary - plus a cigarette with a Kahlua and Cream - won't be necessary to get me back to where I was.  Goodbye, Cymbalta-world.

And as always, I hope everyone is feeling their very best - only better.  Ciao and paka.



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2 comments:

  1. I'm envious of people who get pain relief from & can stay on Cymbalta and Savella (my choice). As I've mentioned before, Savella was a miracle drug in terms of pain control for me. No drug in the 10+ years of Fibro and nerve damage has ever come close to the pain control I had from Savella. But, the increased migraines caused by the constant high blood pressure (even at rest) and, even worse, the hellish nonstop hypoglycemia was horrendous. Being border hypoglycemic all the time (I must eat every few hours, foods have to contain a certain amount of protein and healthy fat), it takes very little to throw me into nightmare hypoglycemia symptoms.

    I've been bedbound thanks to migraines so many days that I could probably write some 19th century book about the suffering. ; ) BUT, being bedbound due to nonstop low blood sugar was too much to bear for me. It felt like my heart was just going to stop, I had cotton mouth, shaking hands, slurred speech, incoherent thoughts, cold sweats, rage (this doesn't include the justifiable rage I feel for being ill), etc. I've said to my diabetic father who sometimes doesn't eat right - if diabetics felt the way hypoglycemics feel when we have an episode, diabetics would be 100% more compliant.

    I didn't feel the awful anxiety you felt; I 'just' had suicidal feelings for a LONG time. Thankfully the logical part of my brain new it was the drug and withdrawing from it. But, it was scary nonetheless.

    I can't wait for the Cymbalta to finally be fully out of your system. You know when you've had a cold for a week and can't breathe out of either nostril and then one morning you wake & can breathe again? Amplify by 1000% the joy you feel being able to use your nose again and that's the joy you'll feel when the-nightmare-that-is-a-drug is gone. I wasn't shocked at how long it took for the Savella to finally clear my system because I was sick for 3 days after only taking 2 doses of Atenolol (a beta blocker for my migraines).

    As always, I wish you the best and hope this episode is over immediately!

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    1. I so wish we could find the magic bullet that could help you out, Melissa. It just upsets me so much when I hear all the crud you've had to go through and continue to go through. I just find myself keeping fingers crossed as you wait for your next botox treatment and hope that it'll work.
      I loved the line where you wrote about diabetics would be more compliant if.... Wonderful observation.
      Thanks again for your encouraging words and wisdom. They always make a huge difference! xx

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