Terrible Weekend

I finally made it into work today after spending the last three and a half days in bed.  I am tempted to think I jinxed myself with my last post, turning my frown upside-down on Friday.  Something happened to me right after lunch Friday and it was just a very bad weekend-plus-a-day for me.

It started with explosive diarrhea.  (Hey, shit happens.  It's my forum and I'm going to be frank here, so I hope you can handle it.  That's about as TMI as I'm going to get for this one, though.)  I spent a lot of time in the bathroom Friday afternoon dealing with that.  I finished up my work day and drove myself home, exhausted.  Once I got home, I was relieved and planted myself directly into bed with all the covers over me in my clothes. I was cold and I couldn't seem to warm up, though I don't think I had a fever because I never felt hot or unbearably chilled, just cold.  I probably warmed up some, though, because my chest hived out in a rash. 

Cholinergic urticaria rash on my chest, from my own body heat

For a minute I thought I was allergic to something I ate - maybe soy, maybe sushi - but after I thought about it, I realized that I get heat rashes like this.  I have cholinergic urticaria. My stomach felt beaten up so I didn't eat dinner.

Saturday morning, I tried breakfast, thinking I might need some nutrition, but I developed crampy, abdominal pain soon after eating, so I avoided eating much Saturday and just continued to rest and drink water while staying social with online activities via my smartphone.  I had a small, simple dinner of peanut butter and banana on bread, which was small and not too hard on my belly.

Sunday, I woke up with a headache.  It was the icky kind that I had a few weeks back, when my blood pressure was through the roof and my nose was leaking blood because it apparently had nowhere else to go but out a hole in my head.  I wasn't sure what to think.  My belly was a bit better, but my head wanted to pull me into the center of the Earth and flatten me.  I'm almost finished weaning off Savella, so I didn't know if it was a withdrawal symptom, a side effect from still being on it, or unrelated to it and maybe all about Friday's possibly tainted lunch.

I was useless and laid in bed.  I couldn't even imagine reading or looking at my phone for fun activities.  I was miserable.  I tried to relax and sleep.  I managed to nap, but only after those all-too-familiar starts to fully awakened consciousness, even before ever falling asleep.  This was happening in the pre-sleep stage.  I don't know what that is.  There was no noise, no dream, no reason for these moments that I could understand.  I guess something in my body really flips out when I try to sleep when it doesn't want me to.  When I got to sleep, I dreamt something irritating that made me feel a little cranky and remember awakening suddenly - for nothing.  Again, there was no startling moment in the dream or any noises to wake me.  It was all some internal burst of WAKE THE HELL UP NOW that I cannot comprehend.

Anyway, by Sunday night, I was able to enjoy a great home-cooked dinner made by my husband and didn't feel sick to my stomach afterwards.  At least I had that victory.  I also thought my headache was on its way out, but it seems to feel temporarily better WHILE eating, but then comes back again after I'm finished eating.  What is that?

At any rate, I hoped Monday morning I'd be all set without a headache and ready to work.  No dice.  Woke up feeling awful!  I gave up hope of going to work when I realized I couldn't fathom moving from the bed.  I wanted my headache to fade away, but it was very slow to do so and stuck around through the night.

This morning, the headache was small enough for me to move around a lot better, so I went to work.  I wasn't quite myself, though, but I notice that being around people helps me forget a bit and allows me to become distracted by work or personal chit chat or stories.  I also noticed that my voice decided to leave me.  If the past is any indication, my vocal cords atrophied from disuse over the past three days and now I sound like some kind of elderly smoker.  I will try not to let it bother me and just keep using it, so it can strengthen.  In the past, I mentioned how awful my voice had gotten but people always say they don't notice, so I guess I shouldn't worry.  Could be worse, I guess.

So, I'm on the mend from whatever the heck happened Friday, wasted a weekend resting and not having any quality time with my husband, but at least didn't have to take more than one day off work to deal with it. I'm also progressing toward my last dose of Savella, which will be on the morning of March 9th, if all goes well.  In addition, I've been learning lots about Lyme Disease and a possible connection to Fibromyalgia, and will be posting more about that soon.  There is lots to learn, but it is worth looking into.  If Lyme is causing my Fibro, I can at least try the treatment that has cured many already.  Stay tuned for more on that.

Thanks for sticking with me through this detailed post!

Weaning off Savella and a New Doctor Found

I've completed the first two weeks at the first stage of lower dose of Savella for my weaning off: one tablet per day.  Yesterday, I started the next and final stage: a half tablet per day for 14 more days.  I took a few more half-tabs with me to work, just in case any crazy discontinuation symptoms occurred, but I was fine.

I have done a bit of research on discontinuing SNRIs and learned that some have longer half-lives than others.  Pristiq (similar to Effexor), which I quit taking last July, when I started on Savella and suffered lots of terrible withdrawal symptoms, has a short half-life.  Some people suffer withdrawals if they miss a dose of some SNRIs because they have such short half-lives.  My initial research led me to believe that maybe Savella (milnacipran) had a longer half-life than Pristiq, thus it isn't causing many discontinuation symptoms for me.  However, it seems it's got a very short half-life, but things are more complex than that, based on what this study indicates.  Gee, I sure wish someone who'd gone to medical school could have briefed me on some of this!

I actually feel better now that I'm getting off this evil drug.  I'm sleeping most or all of the night, though I still get very tired for much of the afternoon and evening.  My nasal bleeding is greatly reduced and I've even had days of no blood at all!  YAY!  I'm also only dealing with pretty tame pain levels (for me) so I'm smiling a lot more.  I even turned my frown upside down at work.

I created and ordered this magnet to indicate my mood to my coworkers. 

My heart rate still seems high sometimes, but I haven't measured my pulse officially quite yet.  I assume my blood pressure is at or near normal levels again, but I won't know until I get it tested at the follow-up appointment with my general doctor.  Headaches have been largely absent as well, which I'm thrilled about. I still have symptoms, of course, but they're not absolutely miserable lately, and it seems to match up with the lower Savella doses.

I'm hoping this is all a positive sign that I'll be better off SNRIs than on. Maybe it's a matter of getting used to the everyday Fibromyalgia symptoms and learning to avoid the flare triggers. Maybe regular Fibro without a bunch of additional medicinal side effects feels good by comparison. It's been almost exactly four years now since my official diagnosis of Fibromyalgia and I have learned a lot about what my body is telling me... and I am still learning to listen to what it's saying.

In addition to the above good news, I also decided on my next fibro doctor to try, based on a recommendation.  My appointment is set and I'm going to see if she's a good fit for me.  This doctor's office is actually farther away than I was hoping, especially since I expect to be going there frequently for regular follow-ups, but I've heard good things.  Also, the many other possible local doctors I started to do research on had reviews that were scaring me about some of the same problems I'm trying to escape.  Picking my next doctor was turning out to be a major project.  I'm also racing to beat my expiring prescriptions, since I fired my last doctor.  I don't know if he'll refill them but we'll find out, I guess.

Anyway, the same person who recommended the doctor I'm seeing soon also recommended a wonderful gastroenterologist to me last year, so I'm hoping for the best.  I'll be sure to report to you all on how my first appointment goes.

Hope things are going well for you all!

Pinterest and PB&J in a Cup

Have you discovered Pinterest yet?  It's a fun way for members to organize their interests by "pinning" various websites, photos, or whatever to virtual pin boards.  The kinds of things that tend to come up a lot are: recipes, crafting projects, fashion tips, hair and beauty tips, but you can pin anything you want.  My husband created a board just for his bathroom remodel project, to help him track ideas about all the details of redesigning a bathroom.  It helps when showing a designer what kinds of looks or functions are within the realm of the project.

Check it out and browse.  Every time you refresh, you'll see new things being posted by members.  If you want to be a member, a member like me can invite you.  Just ask.  The inviter will just need your email address of the invitee.  Once you're in, you can start pinning or repinning what you see and organize your boards any way you like.  There is lots of fun and inspiration out there and I am enjoying finding it.

Speaking of inspiration, I just pinned an original recipe to Pinterest today.  Here it is:

Source: Uploaded by user via Benia on Pinterest

PB&J in a Cup: a slushy treat!
1-2 cups frozen red, seedless grapes
1 Tbsp natural peanut butter, warmed (gooey)
a splash of rice milk (or soymilk or other liquid that might suit you)

Freeze up some red, seedless grapes. (1-2 cups of whole grapes is good). Once they are frozen, pop them off the stems and into a blender. Be sure none of the stems get into the blender. Flip the blender on for a quick second or two after the grapes are chopped up nicely. If necessary, scoot them toward the blade between bursts. Add the peanutbutter and rice milk and blend again. If necessary, scoot the mush toward the blade between bursts. Once blended to your satisfaction, pour into a mug, grab a spoon, and enjoy your slushy treat!

The Late Call Back as Weaning Continues

Just got a call from my fibro doctor's office - one of the staff told me this:  The doctor "tried to call Friday" so he's having her call and tell me this.  (This is bullshit.  I only have a cell phone and there is no record of ANYONE calling my number Friday, much less any message.  If he tried, he failed to dial my number.)

The doctor recommends taking two half-tablets every day (halving the full dose a little differently than I'm doing by taking one full tablet a day for two weeks) then if side effects continue, he will switch me to Cymbalta.  At this point I lost control and calmly told the girl this was not helpful at all, that this isn't the first time the doctor has let me down when I needed him, and that I cannot trust him and need to see a new doctor.

He should already have in his records that I tried Cymbalta and couldn't tolerate the severe nausea.  I'm not going on it again.  I'm determined to get off SNRIs for a bit so I can judge if they are making any positive impact at all or not.  Why bother with side effects if the main effects aren't even being relieved?  Screw it.

My only problem now is I need to scramble to find a different doctor or else I'll run out of other prescriptions I need.  I'm having a hard time finding someone close enough and good enough to start over with.  Those of you with fibro out there know how hard it is to find a new doctor.  It's like a new job.  Ugh.

The good news is that, since reducing to a half dose of Savella every day, my headaches have been better (not gone, but lots, lots better), my nose hasn't been bleeding as much, and I've been getting some sleep.  I'm still on the first two weeks of weaning, though, and when that's up and I reduce the dose again, we'll see if anything else changes - good or bad.  Stay tuned.

I'm Weaning Off Savella

With two calls into my fibro doctor and still no response, I've made the decision to wean off Savella.  I've also decided to fire my fibro doctor and find a different one to take care of me.  If you remember how my start with Savella went, you'll see why I'm not expecting much from him this time around.  I'm through with his nonsense.

After doing some drug interaction research after Monday's appointment, I learned that the Sinex nasal decongestant spray I've recently been taking doesn't play well with Savella.  According to drugs.com, there is a "moderately clinically significantly" interaction between these two drugs.  Here's the exact interaction wording:

Be careful with SNRIs and other drugs that can affect blood pressure and heart function!

As you can see above, there is a serious risk of blood pressure problems and pulse and warrants getting off Savella and SNRIs altogether, which is my current plan.  Again, I have learned all of this without any help from my fibro doctor.  My fibro doctor was the one who told me to try Sinex for the nasal congestion I mentioned during my last appointment.  What's more, he didn't tell me that it should not be used for more than just a few days - this I learned from my primary care doctor on Monday.  I'd been taking it for a couple of weeks.  This is the last straw.  I can't trust him.

Knowing all this now, it is not much of a surprise to me that I am feeling some relief after having stopped taking Sinex since Monday's appointment, and having skipped my first dose of Savella last night.  My head feels much better today and I actually slept for a change!

Thanks to others who have had to wean off SNRIs and shared the experience online, I have developed a month-long plan to wean off Savella.

The full regular dose of Savella is one 50mg tablet, twice a day, resulting in a 100mg per day dosage.  Starting last night, I will eliminate my bedtime tablet each day for two weeks, resulting in a 50mg per day dosage.  Then I will eliminate one morning dose every two days for another two weeks, resulting in a 25mg per two-day dosage.  It's not perfect, but I'm hesitant about cutting the pills in half right now, as I have not been able to confirm that it's a safe thing to do.  One person reported a worsening of heart problems after taking a cut Savella pill and warned against it.  I will continue to look into this as necessary and watch for those odd withdrawal symptoms.  If withdrawal (or "discontinuation") symptoms become problematic, I will try increasing dosage a bit to reach a happy medium as my body adjusts.  (If you can point me to something about this on the web, please leave me a comment about it!)

With this plan worked out and symptoms seeming to calm down a bit now, I feel a bit more in control of my body's chaotic messages.  This is, of course, not to mention all the "usual" fibro symptoms and pains that I can't escape.  My hope is that, with fewer side effects complicating things, my fibro might be easier to manage.

Things are still stressful, though, because there is a lot going on at work as well as at home.  Lots of projects are coming fast and furious at work because the market is changing and it requires action.  As a member of my company's IT team, I get to be affected by all of these sudden and very urgent changes, even when they turn out to be reversed later due to new information.  It's already happened and it will happen again.  I just need to deal with that.  It's going to be a long year.

A family member's health, though, is also suddenly very poor, but we aren't exactly sure of the diagnosis yet.  He has his own chronic health problems, so the implications of his new symptoms are serious and worrisome.  I am doing my best to stay strong and take care of his needs while my health seems to stabilize, though I also don't know how my body will handle being off SNRIs long-term.

My schedule and fibro doesn't allow me to do much of what needs to be done at home, much less handle all these additional challenges.  I don't have much choice, though, but to try to keep calm and carry on, so that is what I must do.

I'm Blaming Savella

I just got back from an appointment with my primary doctor to address my recent five-day headache and neck pains, sinus congestion, and nosebleeds, as well as crappy sleep that's been going on since Christmas/New Year's.

So yesterday, on day four of this episode, I noticed the head and neck pains have been choosing either left or right, and remain limited to that side at several points on my head: temple, just behind my ear, at the base of my skull, and on my face near my eye or nose.  At any given time, the pain will pick one or more of these locations on one side of my head, and it's been worse at night and in the mornings, with neck pain being very prominent while lying down in bed.  I reflected on this all during the evening, while also noticing that my pain was becoming almost unbearable.

In addition, my nasal congestion issues have been continuing since December 26th, when I thought I'd caught a mild cold, but managed to keep it from spreading to my husband, which seems impossible.  Since then, I've had multiple sleepless nights and many nights of very interrupted and restless sleep.  I've been a zombie version of myself at times and crankiest when morning brings nothing but severe pain and fatigue.

Finally, the nosebleeds have gone from a touch of blood here and there in the tissue to full-blown bloody sprays and red-marker bloody tissue events, including the one from last week that happened at work.

At my last appointment with my fibromyalgia specialist, I brought most of this up, but I hadn't had the headache pattern down then, so it wasn't discussed.  I also mentioned the ridiculously high heart rate I've been having, thanks to Savella, which I started last July.  This is a well-known side effect of this drug, and although he measured my pulse in the office at 104 (normal is about 60), he didn't seem worried about it.  I half-joked that I was using up years of my life to speed up my heart rate.  He laughed.  I decided not to worry, especially since my blood pressure that day, although somewhat higher that normal (I have never had high blood pressure), was still in the normal range.  He reassured me that it would be okay and this was just an annoyance.

Today I learned otherwise.  My blood pressure was taken at my primary doctor's office on both arms.  The first one was about 130 over something.  The other arm was even higher.  Then the doctor came in to talk to me and took it again, himself.  It was 150 over 90.  WHAT?!  Typical normal blood pressure readings for me have been around 100 or 110 over something.  Here are some guidelines about what's normal.

Here's what I know about nosebleeds with headache from searching online yesterday: it can be caused by high blood pressure, among other things.  I didn't, for a second, think that was actually the one causing my symptoms.  Little did I realize, that my body's equilibrium had quickly gotten off track.  As the title of this post indicates, I'm blaming Savella.

I didn't think Savella would be a problem once I'd switched to it (and gotten past all the crap withdrawals of the switch).  Then I started having weird facial flushing.  I figured those would stop, but they haven't.  Then the heart rate increased.  Then the sleep just stopped.  Now my blood pressure is skyrocketing.  I'm even having more tremors from this maniacal stuff.  Fuck Savella!  My head is exploding pain and blood and I can't sleep.  I don't even know if it's helping any of my fibro symptoms anymore.  I want off this crazy drug.

I called my fibro doctor and left a message with the someone there, asking my doctor to switch me to something else immediately.  If I have to, I'll wean off this SNRI and just be off antidepressants, though I know they do help balance out some of the unbalanced things with fibro.  However, I will not take balancing of one thing and unbalancing of others.  That's crap.

Stay tuned for more as things develop.

Oh, forgot to mention that the doctor prescribed Amoxicillin for the nasal congestion, just in case it's infected.  He didn't see anything that indicated infection, but it's worth a shot, since it's been over a month of this stuffy weirdness.  We'll see how that goes.  I have to take a pill every 8 hours for 10 days.

Feeling a Bit Better

Feeling Lame Update:

As you may have read in my previous post, yesterday, I was a hot mess.  I'm not skipping along merrily just yet today, but I did manage to get some sleep last night.  Although my back is still hurting quite a bit, and I had more bloody nose mess in the morning, I did not have any more bleeding for the rest of the day (amazingly), and I did not have asthma issues at work today.

I may be headed for better days soon.  I've been making a real effort to eat healthier and have been managing to get A's in Calorie Camp because of it, so hopefully that effort is helping something to go right.  Not sure what made it go so wrong yesterday, but such is the life of a fibromite - always unpredictable.  Oh, bonus: I lost 3 pounds as of my weigh in this morning.  Yay me! 

I'm going to continue hoping for better days now.  Thanks for reading.  I hope you are having a good day.