About Me

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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.

Wednesday, May 15, 2013

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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  1. Awesome read Irene! I'm on cymbalta and know real side effects. Though when they increased the dose I experienced more muscle jerks, then my acid reflux was over the top which built up scar tissue in my esophagus. I dropped back to the low dose but still have swelling in my throat so I can't eat or drink very much. I'm weak and the pain is increasing!
    Again thanks for the great read!

    1. Great info on the Cymbalta. I am experiencing more muscle jerks, MUCH more acid reflux (hardly had much at all before). Swelling in throat, ditto. Weaker than before and yes, pain increasing. Thanks so much for helping out. xx

  2. Wow, so for lack of a better phrase, you've been through some serious crap. I was prescribed a low dose of Elavil very early on after my Fibro diagnosis. It did wonders by allowing me to sleep BUT, I put on weight quickly and became depressed (I wasn't depressed before the weight gain). I went off Elavil. At some point later, the doctor tried Zoloft ; it took away anxiety and depression which seemed to stem from the anxiety. Then my leg started swelling. I was sent to the hospital for bloodwork & a sonogram to determine if I had a blood clot. I didn't. I was taken off the Zoloft because it was the only variable. A year went by and I desperately needed medication to deal with my run-away anxiety and depression. This time, the Zoloft did nothing, even on a higher dose. Zoloft was once again discontinued.

    Some time went by and I heard about milnacipran studies in the US. It had been used for years throughout the world as an antidepressant but, a company bought the rights to use/test it for Fibromyalgia treatment. I was hopeful because it had a different ratio than Cymbalta with regards to serotonin and norepinephrine. That's important because I developed RLS in my back, behind my nerve damage and certain anti-depressants can trigger the hellish twitching.

    Finally, Savella (as milnacipran was/is named in the US) was FDA-approved and my rheumatologist prescribed it to me. It was a miracle drug. I slept like a 'normal' human being and it substantially reduced my pain. I was even able to drop my Neurontin by 600mg. Eventually, my migraines worsened. I chalked it up to changes in weather (which is legitimately happening, especially in the mid-Atlantic states). But, I finally gave in to my mother's repeated requests and went to the doctor to have my blood pressure checked. I'm normally 115/70 - 120/70. But, while on Savella, my resting blood pressure was 175/85. Of course that was causing the migraines to worsen. I take Verapamil even though I have normal blood pressure as a migraine-preventive measure. Even with 240mg of Verapamil in my system, I was consistently getting high blood pressure readings while on Savella.

    As much as that sucked, it was the constant hypoglycemia that sealed Savella's fate. I ate every few hours, foods laden with protein and fat because you need fat to properly process protein. I was weak all the time, slurring my speech, blurred vision, incoherent, in a cold sweat, shaking, clammy hands, in a rage. Some hypoglycemia symptoms are also migraine symptoms so the Savella was causing hellish side effects; it sort of double-downed my migraine and hypoglycemia symptoms. I went to an endocrinologist, was given the blood sugar testing kit and had something attached to my skin to constantly monitor my blood sugar for 72 hours. No matter what I ate, my sugar never hit 100 and I woke with it in the low 70s. Everyone is different. I have a very narrow window of 'normal' blood sugar in which I have no symptoms. After discussing the situation with my rheumatologist and endocrinologist, it was decided I had discontinue Savella. That was upsetting because it was the only drug that provided substantial pain control that didn't involve the use of a narcotic.
    It's very hard to find an anti-depressant given my hypoglycemia, migraines, and RLS because each one seems to have a negative impact on at least one of my issues.

    One important thing - you MUST be vigilant regarding suicidal feelings. I was fine on Savella but, even with slowly tapering off, I developed VERY scary suicidal emotions. I knew it was the medication but, I told family and friends so they could also watch me for any sudden changes. Cymbalta can also cause these feelings. You must make your family aware of that so they can observe you for anything that seems 'off'. The commercials make it appear that these feelings happen to kids, teens and young adults. But, I was closer to 40 than 30 when this happened.
    As always, I wish you VERY well.

    1. A huge thanks to you, Melissa, for all the info you included above. Much ammunition as I try to figure out the new meds.

      LOL! I'm still laughing about the comment with "serious crap." I can always count on you to give me funny phrasing, along the understatement line!

      Hope you're doing your best! Are you due for the botox soon? xxx

    2. My next Botox dose is in early July. The migraines seem to be completely uncontrolled. I took my Yorkie out for maybe a minute this afternoon and the piercing skull & eyeball pain restarted. I don't do well with humidity or anything related to a drop in barometric pressure. I've always been pale; I don't tan, I burn. But, with the migraine situation the way that it's been, I'm going to be glow-in-the-dark white as I can't leave the darkened room for long.

      Then it gets better (sarcasm). I've developed a new migraine symptom - because, really, the other symptoms weren't bad enough? ; ) I'm bloating in what looks like time-lapse pregnancy. It's not the irritable bowel that a lot of migraine sufferers get. And I'm positive there's a direct coorelation between the migraine and the bloating because it's instantaeous as soon as the icepick through my eyeball and skull pain begins. I'll discuss it with the neurologist when I see him. I feel like the perfect migraine and Fibro study subject - someone could write his or her thesis on me. : )

      I hope you're doing better day by day though preferably minute by minute.

    3. That's a long wait, Melissa, so I hope that the weather where you live lightens up in the "drastically" changing category. Perhaps some fake tan will help in the pale field. I know what you mean: I never ever get a tan and live in a bat cave because of annoying light and fear of pesky (!!!) glares.

      Do you know that until a couple of years ago I thought that bloating was actually normal? Makes me stop and wonder how perceptive I am! A shirt can be loose on me in the AM and then not fit at all by PM.

      I was about to answer your message on FB but fell asleep for over 16 hours for a much-needed "marathon sleep." Will get to it later tonight (I hope)!

      Wishes that you last till July with as much ease as possible! xx