Fibronaut At Home

Day Two/Three of No Narcs

It is a good thing I know myself and that I set my alarm for my suboxone, otherwise I might have missed my dose for the day.  So far so, so, soooo good.  I say that because even though I have pain and fatigue, I don’t have the added blahs from the narcotics.  I probably over-did it yesterday and I fell asleep reading in a very awkward position but I’m hopeful that today will be a magnificent repeat of yesterday (minus the headache).  I did have a conversation with an acquaintance who has been down the same road recently (hers was a different drug and an addiction however) and she warned me that it wouldn’t hit me until the third day.  Which I think is today?  I stopped taking the oxycontin and percoset on Tuesday and today is Friday so….wait.  Is today day four?  I’m so confused.  Wednesday would be one day, Thursday would be two days and Friday makes three.  So I’m heading into day four.  Aren’t you glad I took you on that little trip with me to clear that up?  Welcome to Fibro-fog!

I’ve been thinking (OH NO!  Anything but that!) about exploring alternative medicine.  Acupuncture mostly.  I have a blogger friend who does this and loves it.  I’d also like to get back into the pilates that I used to do on occasion.  I used to have a video, but I think I sold all my workout videos in our last All-Around-Town garage sale.  The acupuncture, sadly, depends on whether insurance covers it. I’ll have to get on my library’s website to find a pilates DVD.  That is the plan anyway.  And, yes.  I did just make that up.  It is in my blog, so it must be.


In other, TMI news, I made my hubby blush with what I wrote in my blog yesterday.  “You put that in your blog!  Where anyone in the world can read it!”  When he put it that way, I guess it was a little forward of me.  However, if I’m really going to write about living with fibro, it would be remiss of me to leave out such a huge part of this “experience”.  My hubby and I used to have sex all the time.  And I LOVED it.  Who wouldn’t?  We will have been married 12 years come June and were not virgins on our wedding night.  That makes 14 years of having sex with the same person.  I’ll admit we started out rather awkwardly (I love that word) being both virgins, but 14 years is a lot of time to practice and with a little communication and a lot of honesty we were both very much happily satisfied.  Now, we are having to relearn everything and I really mean it when I say that you cannot teach an old horn-dog new tricks!  Well, you can, but it takes a lot longer than it used to.  I’ve always liked a little pain with my pleasure, but this is ridiculous.  It honestly feels like he has sandpaper on his Oscar-Meyer.  Because of the fibro, I had to remove the IUD I had.  I tried the ring, but it irritated me to the point of pain during intercourse.  We thought we’d just use condoms like in the olden days of our relationship, but those irritate me even more. Nobody wants to give me even more pills to take with the ones I’m already taking and although we’ve talked about my hubby going under the knife, he is still dragging his feet due to insurance deductible issues.  The pull-out method will hopefully see us through this difficult time without a pregnancy.  Yes.  I do realize how stupid this is.  I once gave a very painful and awkward (note to self: get a thesaurus) speech on birth control in high school.  I know that there are other ways to have “fun” but I already have neck and jaw spasms not to mention my over-active gag reflex.  I did put TMI ALERT in all caps.  I’ve already won the Fibro-Fighter Award.  Maybe I can win the TMI one too.

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Day One of No Narcs

I’m kind of over my anger at my old neurologist.  Not worth my time, frankly.  I had a couple moments last night, where I felt panicky and almost kind of shaky, like I might hyper-ventilate.  I don’t know how else to describe it.  TMI alert!  The diarrhea is an added bonus., not!  Nothing really exciting to report, except that my pain isn’t any worse despite not having the “pain” medications that I was used to.  Last night was more painful, but today I already loaded the dishwasher, started a load of laundry and went up and down the stairs a couple times (my laundry room is downstairs).  Don’t get me wrong, I still have pain and fatigue, but I’m under my heating blanket with my heating pad on my knees and that is helping.  One knee is starting to throb, so we’ll see.  My new doc also gave me something called suboxycodone that is supposed to help me with the withdrawal symptoms, but you put it under your tongue, wait (forever) for it to dissolve, and although they’ve flavored it with orange, that doesn’t cover the awful taste.

I can honestly say that I haven’t started craving the narcotics, but it is in my brain that it might help my pain if I take them.  I am not even going there though.  I’ve been trying to distract myself with Facebook and  I’ll probably start reading the new J.R. Ward book that I got from the library even though it is huge and I’ll have to balance it with pillows because it’s too heavy to hold in my hands.  I do have a Kindle but it was quicker to get it from the library in book form. Another TMI alert!  I’m actually feeling horny!  Hasn’t happened in way too long (read: forever to my husband).  Am I rambling?  Again?  What was I talking about?


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New Doctor and Old Friends and Family Affairs

I had a very illuminating visit to my new doctor.  He is a pain specialist and told me flat out that narcotics are a no-no when dealing with Fibromyalgia.  Why, then, I wonder, did my neurologist put me on them in the first place when he was the one  who was telling me I probably had Fibromyalgia all along?  I would really like to call him up and give him a piece of my mind.  The narcotics may have been making my pain worse and now I have to go through the process of getting off the narcotics completely when I may be habituated to them.  I hoping this experience is not too painful.  This new doctor was such a breath of fresh air.  I really like his attitude, although he did the old poke and prod at all the good spots we fibromyalgic’s have so I feel pretty sore.  I’ll let you know how the withdrawals go.  They are putting me on something to help me deal with the withdrawals.

In my last post, I talked about the party I had and how much fun it was catching up with oldie but goodie friends.  I actually felt human for a couple hours.  I always get zits when I’m nervous about an upcoming event and I picked a couple on my forehead.  I know this is really gross, but now they’re infected and I’m on antibiotics to clear up the infection, but in the meantime it hurts so bad.  I took so long to go to the doctor because I thought it was just my Fibro making it hurt so bad.  Making it so much better though, is my friend Becki, who is planning on running The Boulder Boulder and The Tough Mudder in my honor.  I wish I lived closer so I could become better reacquainted with my old friends because they really are awesome people.

In family news, I just found out that a younger cousin of mine has been diagnosed with Fibromyalgia.  Sad to hear.  My Dad wants to make it into some kind of government-food industry conspiracy theory, but I’m pretty sure my Mom has Fibromyalgia too.  We’re off on a walk to the library as part of my new exercise plan called “walk somewhere every day”.  Yes.  I did just make that up.


You Gotta Have Friends!

What a wonderful day I had yesterday!  Good friends, who I’ve missed so much, camaraderie, and support.  I had a Celebrating Home Party and if I forgot to invite you, I’m so sorry, and if I did invite you and you couldn’t make it, I’m sorry for that too.  Also, if you don’t know what that is you should Google it.  They have a very nice selection of items for your home and garden.  I’d be happy to recommend my Sales Consultant as well (I think that’s what they’re called).  It was so nice to just sit and chat with people who I haven’t seen in many months or many years.  And while I really have thought of myself as socially backward for years, I realized after yesterday that it isn’t so much me being nervous or shy but me imagining things that aren’t there.  Or maybe it was just the total acceptance from the ladies I had around me yesterday that gave me confidence.  There is something so refreshing about being around people who you know will tell you if your fly is open, or if you have a boog hanging out.  (Not that my fly was down, although I had jury-rigged my capris so they wouldn’t be so tight around my waist.  I was also mercifully boog-free)  So thank you for that ladies.  I may not have a lot of friends but I have awesome ones.  Quality, not quantity, yes?  I thought of taking a picture to commemorate the moment too late, after everyone had left.  That was my fibro kicking in.  I realized another important thing:  I can just be sometimes.  Not everyone is judging me and even if they are, that is something they have to deal with.  I don’t have to constantly grimace in pain, even though I feel pain.  I can try to smile once in a while.  I don’t have to succumb to my fatigue all the time.  I don’t have to constantly think about my fibro or mention it to others.  I can do other things.  This may seem like an obvious thing, but to me it was profound.  Fibromyalgia is something that’s going to be with me for the rest of my life.  I’m going to have to live with it.  Key word LIVE!



It’s been a year since I went to work.  I want to say it all started then, with a pain in my right knee, but I know now how untrue that statement is.  I’ve had arthritic like pain, fatigue and depression since I was in high school.  I had learned to live with all these things, thinking they were normal, that everyone felt that tired, had the same aches and pains.  I just whined a lot more than anyone else.  Severe depression began in August of 2010 and really came out of nowhere.  Muscle spasms began shortly after, starting in my eyes and my abdomen.  Then came the pain and fatigue that made it impossible to work.  I tried taking up knitting until the pain moved from my lower body into my arms.  I was sensitive to the lightest touch and sex was impossible.  I went to my OB-GYN, who I’d been seeing for 11 years.  He insinuated that I didn’t really want to have sex, that my husband was abusive and then proceeded to call me crazy (ha ha, nervous laugh after he saw that I wasn’t laughing).  I couldn’t read the books I loved because holding them was too difficult.  Not only did I have pain in my hands, I couldn’t hold them still.  I had muscle spasms all the time.  Falling asleep and staying asleep became a once a month event.  The pain in my jaw made eating difficult and even holding a fork seemed like too much pain and too much work.  The pain in my face was unbearable.  It felt like someone was sticking me with tiny needles.  I even had muscle spasms that had me doing the Elvis lip and a bunny nose uncontrollably.

I tried medication after medication for pain, not yet diagnosed with anything, I kept telling my doctor’s that I wanted to be pain free.  Unfortunately, for anyone who is diagnosed with fibromyalgia, the only way to diagnose is to rule out everything else.  The first torture was an EMG.  They use little electric pulses on all your nerves in one arm and leg.  Then they stick needles into you.  Enough said.  I went through so many MRI’s, some of them painful because of the position the technician put me in.  I was too stupid to complain, sobbing at the end of one of my hand MRI’s and ended up not doing the other one.  I endured a spinal tap, that was supposed to be pain-free, but hurt so bad, even my neurologist, who used the smallest needle possible and had been doing them for over 20 years was surprised at my reaction.  I was sent to physical therapy for my knees and snapped when the physical therapist suggested that my symptoms sounded like fibromyalgia.  I couldn’t even do the exercises and stretches that he asked me to do.  They were too painful and they made me feel worse.  Then came the headaches.  I was in the emergency room twice, vomiting uncontrollably from the pain.  I even went to my primary care physicians office and although he wasn’t available, thought another doctor would be able to help me.  She said very distinctly “I cannot give you any more narcotics”.  That wasn’t what I asked for.  I just wanted to feel better, to be rid of the debilitating headache.  My neurologist finally determined that muscle spasms in my neck were causing the headaches and put me on a muscle relaxer, Baclofen.  The combination of Lyrica and Cymbalta was supposed to take care of the  pain, the depression and the fatigue.  Not even close.  The Lyrica combined with my inability so far to commit to an exercise program has caused me to gain 40 pounds in 9 months.  Almost like being pregnant, without the reward of a cute little baby to cuddle and without any idea when the weight gain will stop.  I’m afraid to go off the Lyrica because it does help with the uncontrollable muscle movements but switched the Cymbalta for Amitryptaline and Fluoxetine to save money.  I sleep better now, but still feel unrested even if I do get 8 hours.

I’m reading “Pain Tracking: Your Personal Guide to Living Well with Chronic Pain” by Deborah Barrett in the hopes that I can someday lead a normal life.  Thanks to Mary Jane at Northern Plains Public Library for finding and recommending the book to me.  I’m trying to get off of the narcotics, even though I’m probably experiencing more pain because of it.  I get to stay at home with my two-year-old and pick up my eight-year-old and my ten-year-old from  school.  I’m actually driving, which I had given up do to the pain and the fog I was in from all the medications.  I’m taking up sewing, even though using my hands and arms that much causes more pain than if I just played on the computer all day.  There comes a point where you just can’t sit, accomplishing nothing, having nothing to show for yourself.  The sense of self-worth that working used to give me has to be filled with something else.  I love my kids and my hubby and they are great but I feel like I need to do more than just be a wife and mother.  Which IS crazy!  I can’t even keep up with the housework and I want to do more.  Once upon a time, I was up with the birdies and out the door for eight hours of running around like a chicken with my head cut off with only an hour break in between.  Now I’m lucky if I’m out of bed at my old lunchtime.  I used to read a new book every couple days (romance and erotica, no deep thinking allowed) but now I’m lucky if I can concentrate enough to finish a novel a week.  I’m easily distracted and if I do have a conversation with someone other than my children, I find myself rambling.  I have to make notes before I go to the doctor, not only to be sure that I get my half hour that I’m paying for, but also so I don’t forget anything.  It is now 4 in the afternoon and I still haven’t showered (ew, right?) but Emma is asleep so after I let the dog back in, I’m going to give it a shot.  You might think I’m joking but seriously, I have to schedule a shower or else I don’t have the time or the energy for one.  It has less to do with my two-year-old and more to do with the fact that on my way to shower fifteen different things will distract me and then I’ll actually get the door locked and I’ll remember that I didn’t bring a towel and I forgot to grab some clean clothes.  The only reason I remember to take my medication is the pain.  My priorities have changed so much in the last year, that I’m still not sure what they are.  My family is definitely first and going back to work isn’t even on my radar.  How can I commit to anything when every day is a new lesson in humility and limits of my body and my mind.  Hopefully by next year I’ll have a better handle on me and my fibromyalgia.

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