Saturday, July 27, 2013

A New Diagnosis for Me

"No, really," I told the Universe. "It's OK. I have more than my share already."

But the Universe can be heartless. It silently, and without apology, handed me another one.

It's called fibromyalgia. It sucks. But it explains almost all of my symptoms since the winter: pain everywhere, enormous fatigue, GI stuff, revved-up anxiety, and depression. I had a brief reprieve -- maybe two months -- and now the symptoms are back with furious intensity.

This fibromyalgia is most likely the result of persistent and prodigious stress over the many years of trying to keep my child safe from his own self-injurious impulses. Of trying to keep him alive and happy (the latter quite unsuccessfully) and never knowing from one hour to the next when or where the next bomb was going to strike.

Man, that is one hard job. I kind of feel like I've earned a ginormous salary but someone forgot to cut my checks. At least, when I let myself think about it, which is not often because it is too damned depressing.

So I have to figure out how to manage these symptoms AND live this new life that is not bounded on all sides by disability and crisis. (Although I guess it is -- my own and not Benjy's.) I started a medication last night because there is only so much sleep you can do without until you start obsessing about Fatal Familial Insomnia (remember that? Yes, I am obsessed with it and have written about my obsession in the past. That has got to be one of the worst ways to go. I'll spare you the agony of a link to a site about it. You're welcome. ;)

Pain all over = no sleep. So I started this new med and of course I feel like crap today -- completely drugged up and still in pain. Because meds and I apparently DO NOT MIX. Kind of like Vicodin and Vodka.


I find it all very confusing. So off I go into the world of medical research once again. I'll let you know when I figure this stuff out. I think I will, if I can muster the energy to put in some effort.

If anyone out there has any ideas, let me know!


  1. Anna,
    I have Lupus and a few other unpleasantries that I'll spare you the gory details of, but once after 67 hours of not sleeping, I looked up FFI as well. And there's not an Italian bone in my sleepless lil body! I now take Vitamin X (Xanax) to keep the thoughts somewhat under control (spinning, spinning, spinning, why didn't I do this 15 years ago? If only I recognized________sooner! Why did I screw up_________?) but now I also take Sonata. And trust me, I've been through allllllllll the sleeping pills they make. It says to take it after you lie down because it's 'so fast', I take it around 6pm and get to sleep around 1or 2am. We've added 20mg of Nortriptalyne also, which helps my stomach, but I sleep! I wake up around 5 and take another vitamin X and sleep a few more hours. Not ideal, but better than being a scratchy eyed Zombie on day 3 of being awake. (by then I'm getting pretty desperate.) You need nothing else to concern you, but my 'fibromyalgia' was actually Lupus.

    1. Anon, thank you so much for reaching out, and sharing your story and some pharmacological tips! I was actually tested both for lupus and Sjogren's. Although I have a low-positive ANA, I apparently have neither. My daughter also has the +ANA and various lupus-like symptoms, and has been followed by a rheumatologist for a few looks like lupus will be ruled out for her as well, since she had a battery of blood tests a few weeks ago -- the last she will have unless symptoms appear again -- and so far no calls from the doc.

      Re: FFI, I have no Italian in me either, but I am SO damned FREAKED OUT by that disease(thanks to my lovely sister-in-law Jo for telling me about it in a way that compelled me to look it up!) that every time I can't sleep for a few days I literally lie in bed with the phrase "Fatal Familial Insomnia" spooling through my mind all night long. UGH.

      Anyway, hope you are doing better, and so glad you reached out. sorry for my delayed response...finally feeling up to writing. All best,

    2. Oy. So, I'm NOT a crazy stalker (that would be my sister, and only me that oshe stalks? So you're okay!) In that regard,at the very least?! I have spent the last few days reading your blog from start to finish; and I am speechless at what you've been through. And sorry. And now happy for deine schône kind!!! I hope this is the place that will make him even better than excellent. I feel so close to your family in many ways - I am a classically trained Lyric the Soprano who unfortunately has lost a bit of my heating to either one of my many odd forms of arthritis or the Lupus (the effects are the same - I can sing a capella, but you do NOT want me to try it to instrumentals. It's painfulfor eeveryone! I don't want to give you any more worries, but I hope that you trust your Rheumatologist; especially with both of you having a positive ANA. Before the SLE dx, I had heard:
      *Thalamic Pain Syndrome (webmd THAT for a laugh)
      *You're Fat (thanks, and Fuck you, I have a mirror at home)
      *One Dr X-rayed my hands and said 'you're fine'
      *Fibromyalgia (which no Dr in St. Louis believes is real)
      *Psoriatic Arthritis (which I actually DO have, along with a myriad of other Autoimmune Diseases.) My problem is the aforementioned crazy sister. If I have it? She wants it so bad she can taste it. Literally, in the case of my diabetes - she ate herself into being insulin dependent. When my Mother had Lung Cancer that metastasized to her brain? (boy did the nightstand story resonate - 'No. MA! Keith is NOT PREGNANT!' (Keith being my husband. Oy.) My sister began telling everyone she'd had uterine, cervical, and ovarian cancer. At the time, we lived less than 2 miles from each other - she just says she was 'very brave so we wouldn't worry'. This was in the 80s,btw. When my Stepmother had breasts cancer (she's a 6 year survivor - the Yaaaaaaaaayyyyyyy!!!!! And I'm so sorry, I wish the same could be said of your sister; guess who had cancer in BOTH breasts, but again hadn't wanted to be a burden? And trust me, when this bitch goes to the Dr she 'checks in at the Hospital' on Facebook. Now she has my Lupus. AND my Hadhimoto's Thyroiditis. And my Dysautonomia. I've worked my Ass off (literally) to lose 100#, now I have to hear that she has lost 21# in 4 days and has to force herself to eat. It's so scary, because she's skin & bones..... (and 250# of fat Ass, but not in HER world!!! Lol - I just thought my crazy story might cheer you up. You deserve it. And a dolphin.

    3. Oy gevalt - your comment thingy HATES me! Lol - I'm losing my HEARING. I have Dysautonomia (can't regulate my body temp and sweat like a linebacker, so screw it, I can't control my HEATING, either! Lol) Going to try to go to sleep now (I'm still not taking FFI off the table......!) The Sonata stopped working for the most part, and supplementing with extra Vitamin X gives me a hangover. Best of luck, and I will eagerly keep up with you from a non-stalkerly distance. *^_^*

  2. Oh, lady, I am so sorry. Glad you have a diagnosis, but sorry you have this to live with. I'm hoping you find a good med/mix that works for you soon. Hugs (gentle, non-bruising hugs).

    1. Thanks, Friend! Glad you are out there keeping an eye on me! Hope you guys are all well...

      Hugs back!