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.

Friday, May 24, 2013

Friday Tidbits: Cymbalta and More...

A real "tidbits" today!  Glory be, rarely do I do Friday's Tidbits the way I envisioned doing it way back when, but today I think I've managed it!  Short(ish), a bit of randomness ... well you know or wish you knew. And so without further ado, viola the adventures of a person with CFIDS/ME/CFS, fibromyalgia and so many other problems stemming from those core conditions, trying to survive! 

  • A huge thanks to those of you who replied to my post of almost two weeks ago, here, as well as on twitter, even on Facebook.  It's my question regarding how well Cymbalta has or hasn't worked out for you.  I know many find Cymbalta quite helpful but my body appears to be in agreement with those who have had problems with it.  (What a shocker, right?  Just a tad of sarcasm there!)  Despite all the negatives, however, I'm very glad I tried it.  I don't like to leave any stone unturned and though I had high expectations at first, as time went along - or as my body started to awaken and return to its very abnormal "normal" self - pretty awful side effects started to escalate.  I held out as long as I could before getting my docs' OK's to end the Cybalta experiment.  I think that without the validation of my readers as to my "is it or isn't it hurting me?" I'd have held on much longer and that alone would have been a gigantic mistake for me.  So you can see how and why the comments really make a huge difference.  Furthermore, I didn't have to go through the torturous, "did I do the right thing?" Again, thanks, my lovelies! 
  • The up-and-down weather we've had has been wreaking havoc, doing a real number on me - as well as to so many of us.  The "aches and pains" (understatement) and migraines have been doozies but somehow the flowers which pop up so miraculously each spring always seem to make the cruddy weather changes worthwhile.  More corn: almost nothing gives me as much joy as seeing nature at its best as the trees bloom and the perennials do their jobs. (And yes, that means if only we can keep the deer at bay!)
  • I'm thrilled that we finally have the holiday weekend coming up.  Hallelujah!  Hopefully, the weather doesn't get too hot since I'd love to break out the barbecue grill given to hubs by the kids about three or four years ago and which we haven't had a chance to try out as yet.  (Aren't we the go-getters, this family of mine?  Yuk, Yuk, Yuk!  And I think I just jinxed that grill!)
  • It scared me the other day when I discovered that my rheumy/immunologist is very concerned that HGH (adult human growth hormone) deficiency is getting to be an epidemic.  Just about every patient he sees whom he sends on to an endocrinologist comes back from testing having "flunked" the arginine-stimulation test where the patient produces an almost non-existent level. That's scary. To show you how often this happens, when that part of my pituitary stopped functioning, it took almost a year from flunking test to the day that HGH was in my hands.  Today getting the HGH from start to finish takes only a few weeks. It's still highly regulated and still extremely expensive but without it I'd be dead as well as many others would be dead.  I do have to wonder if there's a genetic component to it since other relatives have recently shown a deficiency as well. Exciting time for this field to be hitting its stride.  (And, yes, insurance will cover the precious hormone's cost if you have a true "deficiency," a huge consideration.  It's a very highly abused substance that has made it worse for those of us who really and truly don't get the replacement - without treatment, it is fatal.)
  • Yes, I realize that I've been horrid about posting. I do think that now that I'm off the Cymbalta - and soon I'll be off a few other medications which were added/substituted but which, unfortunately, did nothing to solve any of my medical problems, I'll be better.  However, I'm thrilled to report that as I'm slowly returning to my old regimen of medications that DID work, my head will be screwed on much better than it has been in a while.  Short-term memory is still an iffy proposition.  I'm pleased that memory is returning (though some things will never come back, thank you very much) and that the ways of the computer, as well as blogger, are returning to me as more time goes by.  Also, the pain meds are what they were before, so getting to my computer is now doable again.  Yippee!  And thanks again for the many encouraging words to take it as slow as I needed to, as well as those who wrote me the encouragement which goes so far: that my posts have been missed and that some readers get much out of them.  Whoopie!  (Blush.  Aww shucks, y'all!  More, more!)

Finally, may those celebrating Memorial Day be safe this holiday weekend.  May you have much laughter, great food, wonderful company and stable weather that's neither too hot nor too cold, nor barametric pressures that go up and down like the proverbial yo-yo.

And as always, hoping everyone's doing their best - only better!  Ciao and paka! 

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  1. Well, at least you tried. I'm open to every suggestion given to me by my neurologist and rheumatologist. As of this now, I'm 'only' taking Ultram and Neurontin for nerve damage pain and Fibromyalgia (Neurontin also helps with my RLS), Verapamil for the migraines, 5-HPT for migraines, D3 for immune support, and a probiotic. Sounds like a lot but, at one point, I think I was more pills than person. I think I'm technically supposed to include in the list of meds the Botox for migraines since it's clearly still effective - I have little control over my forehead and brows.

    It's very difficult to find the correct meds in the correct doses in the correct combinations to properly control symptoms without making something else worse.

    It's supposed to rain straight through Monday morning so I got as much done today as I could - because the migraine is guaranteed to kick my butt with the temperature fluctuation and constant precipitation. At least the sound of rain helps lull me to sleep when the migraine more or less knocks me unconscious. ; )

    I hope you have a great weekend!!

    1. I didn't realize that 5-HTP is for migraines as well! I'll now add that back into my meds and vitamins/supplements. I've taken it on and off for insomnia (anything that contributes to sleep is fine with me!) over the past few ...decades?... Another ball that got dropped. Thanks so much, Melissa. Hope you have a great weekend as well! xx