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Please Help! Fibromyalgia and My Breaking Point


Fibrofolks, I need your help. Desperately.  But first I ask, that like any good friend, you allow me to vent… a necessary step in identifying just what sort of help I need.

I hate feeling like a fool each time I go to the doctor.  I hate invisible pain from an invisible cause.  I hate being unable to drive without nearly vomiting from pain.  I hate hurting so badly I can’t maintain my composure.  I hate when pain demands attention.  I hate that I can’t go more than an hour without mentioning my pain.  I hate that I’m a wuss with new pain, yet am nearly unfazed by fibromyalgia and arthritis pain.  I hate that walking, standing, sitting, reclining, and sleeping all hurt.  I hate pain that radiates and disturbs my equilibrium.

I hate that I hate things.  But I love that the things I most despise teach me the most-needed lessons.

Apparently I am a slow learner.

Anyway… after struggling with mild to immobilizing spine pain for nearly a month, I am reaching a point we all know too well.  When your body and your mind battle to determine just how much you can endure.  When your mind fears for your sanity while your body punishes your nerves.  When you turn inside and wonder how much longer you can live like this.  When you just need relief.

I leave for vacation on Friday, but the thought of a plane ride has me full of dread.  No doctor has been able to help me, and I just keep living life like normal (mostly).  My chiropractor provided two likely causes after examining my x-rays… but I am still in extreme pain.  Please help me!

Have you suffered from extreme spinal pain?

Mine is centered in the middle of my back (top to bottom) on my spine (and a bit to the right).  It is constant but is made worse with movement.  If I lean forward and rest my elbows on my knees while sitting I feel a bit of relief.  Standing just right feels bearable, as well.  Sitting is a nightmare, but it seems the best way to deal with the extreme dizziness I feel as the pain radiates throughout my body.

I apologize for the mediocre writing and the negative tone.  And I look forward to any advice you may have. I just cannot go on feeling this dreadful.

My action plan for the rest of the week consists of:

  1. Family Doctor follow-up.  Leave with prior chest and spine x-rays.
  2. Appointment with some sort of orthopedic doctor.
  3. A massage.  (It hurts beyond belief to lay on my stomach, but somehow I end up relaxed.)
  4. Continue to be grateful for a job that allows me to get lost in details and forget myself.
  5. Offer my appreciation to the many examples of discipline and strength that motivate and humble me.
  6. ?

What do you recommend I add to this action plan?  I am open to all suggestions.

Thank you!

To those of you who have already shared your advice and experiences, I thank you for your time and support.  I will follow-up with you when I get feeling a bit better.

Fibromyalgia and the Flector Patch


Per my chiropractor’s advice, I went to visit a medical doctor Friday morning… except mine was out until today, so I saw the nurse practitioner.  Long story short, she thinks I’ve rapidly developed scoliosis.  And she thinks this rapid change in my lower back is causing my mid-to-upper back to pull to the right.  Or something like that.  She says it’s hereditary (even though none of my family has it).  And she says nothing can be done (even though she recommended two treatments).

The first treatment is one my chiropractor recommended nearly a decade ago, for another ailment with similar symptoms.  It’s herbal, helpful and heavenly in its effectiveness.  But I’ll talk more about it in a later post.

The second treatment is the Flector Patch.  And it seems to be working.  Best I can tell, and based on what she explained, it’s an anti-inflammatory patch for injuries, sprains, gnarly bruises, and the like.  It’s super sticky on one side, fuzzy on the other, and about 4″x6″.  You simply put it over the inflamed (or, in this case super-painful) area and it works its magic.  You wear the patch for 12 hours, then take if off for 12 hours, and so on.

The first day I didn’t notice a significant impact… Jenni Prokopy, the Founder and Editrix of ChronicBabe, had a similar experience.   I did, however, notice it felt kinda warm and a bit tingly.  The second day I felt more flexible and less stiff in my mid back.  Initially I thought this may have happened anyway, that perhaps my back had decided to get better.  But, during the 12 hours between wearing the patch I notice my back grows more stiff and the pain increases.   So I know the patch is providing relief.  Today was the third day, and I am officially a fan of the Flector Patch.  It is convenient and side-effect-free (thus far), but I am worried about the cost.  The nurse practitioner provided me with over a week’s worth of samples, and each came with a $30 off coupon.  Apparently these suckers are pricey.  But I’ve learned, and continue to learn, no price is too high for mobility.  And I continue to be grateful for my HSA.

Stay tuned.  I will let you know what my final verdict is regarding the Flector Patch.  As for Jenni, she said short-term use of the patch solved a tricky pain issue.  I hope my experience is as effective as hers.  And I pray the Flector Patch improves my condition quick enough to prevent a fibromyalgia flare.

Fibromyalgia, Gauging Pain, and Self Doubt (revisited and revised, in part)


Before you read this post, I recommend you go here.

I’ve been thinking back to this post from last July…

As you may have noticed I have yet to post my follow-up to last Wednesday’s question, “What brings you strength?”  That trend will continue, as I have something else on my mind.

Over the past two weeks I have had a pain somewhere between my shoulder blades and my mid-back.  For the most part, the pain has been consistent, but last night something changed.  Everytime I moved in my sleep, my sleep ceased.  I’d wake up to stabbing pains that seemed to prevent breathing and movement.  Somehow, I managed to fall back asleep each time.  Much thanks to Amitriptyline, I’m sure. But I’m still not sure falling back to sleep was more convenient than just staying awake.  At least when you’re awake you can consciously decide not to move in a manner that steals your mobility and your breath.

Anyway, upon waking this morning I made the stupid, stubborn, short-sighted, decision to go to work, like it ain’t no thing to have blurry vision each time you breathe in deep.  Like it ain’t no thing to be unable to stand up straight.  Like it ain’t no thing to have what feels like lightning bolts travel through your body every time you go over a bump or turn a corner.  Seriously, I had NO idea turning the steering wheel used so many muscles in your back.

But I wasn’t totally stupid.  I did leave a desperate voice mail for my chiropractor in which I said something about imminent death and begged for her time.  And, lucky for me, her unbelievably sweet office manager (who is, in fact, the sweetest woman I have ever met, after S Gold, of course) called me within the hour with delightful news.  They had a spot for me!  So I busied myself with work, and minimal movement, and the wait zoomed by.

Then came the car ride.  And I almost died.  Not because of a dangerous driver (though I saw plenty) or wild weather.  Nope.  I almost died of wussiness.  Now, I’m not sure that is a real word, but I honestly thought I might not make it the twenty minutes to her office.  I worried a bump in the road might sever my spinal cord.  I was sure another breathe meant certain death.  But I was wrong, as I often am.  Thank you Mom for talking me through the rough ride.

Now, to shorten the rest of the story.  I went to the chiropractor.  My floating ribs appear to be rather confused.  They used electrical stim and it worked like a charm… for half an hour.  I ate lunch at my parents’ home.  I went back to work.  I worked a full day.  I nearly lost my sanity in pain on the drive home from work.  This time Daniel talked with me, and the distraction was just enough to get me home before I totally wussed out.

Since being home I’ve done a lot of nothing.  But I have realized the pain is not simply skeletal or muscular, it’s a healthy mix of both.  It’s not my normal fibro pain.  Nor is it my arthritis pain.  This feels like (even though it likely isn’t) it’s far too near my spine for my comfort (in all seriousness).  I’ve got a massage scheduled for tomorrow at lunch, although the thought sounds like torture.  And, to be honest, if I feel like this in the morning, I’m going to a “real” doctor.  Whatevertheheck that means.  I cannot live with pain like this.

Which brings me to a post I wrote last july: Fibromyalgia, Gauging Pain, and Self-Doubt.

Amen.

That pretty much sums up what’s been on my mind today.  So, as I sat waiting for my chiropractor today I reread my post.  And I’ve been thinking.  Am I actually a wuss?  What if I really am nuts?  Am I just overly-sensitive?  Why the heck have I been to the doctor SO MANY DANG TIMES this year?!  If it’s not a cold, it’s a busted foot.  If it’s not a busted foot it’s difficulty breathing.  If it’s not difficulty breathing, it’s an ear infection.  If it’s not an ear infection, it’s… ?!  What is this?  If this is simply “back pain” I’ve never had pain in my life.  If this is “normal” I have led the most privileged life… ever.  I kinda feel like I have, but shouldn’t we all?

Now, to tweak the post from last July:

I had a doctor’s appointment over lunch and by the time I got back to work I was spent.  I gutted out another hour before deciding to work the rest of the day from home. As I walked to from my car I did what I always do when I leave return to work early from a doctor’s appointment… I quizzed myself.  I ranked my pain on a 1-10 scale. I ranked my fibro fog on the same scale. And then i second-guessed myself.

Would “normal” people think this pain was as unbearable as I seem to think it is?  Would “normal” people support my decision if I could share my pain with them?  Would normal people even have gone to work today?

I have to ask myself those questions nearly everyday.  I think one of the most challenging aspects of fibromyalgia (and any invisible illness) is self doubt.  And it was introduced to me by doctors, teachers, friends, coaches, and so-called experts.  And it leads me, on tough days, down a mental road of confusion and frustration.  Wondering if I’m just a wuss.  Wondering if I’m positively incapable of being the tough girl I was taught to be during my decade as a gymnast.  Wondering if saying I have fibromyalgia is just a polite way to tell people I am an incapable and inconsistent Gen Y-er with absolutely no tolerance for pain.

Screw you, self doubt.  I am better than you.  I trust myself, and I am learning to trust the part of my brain that tells me, “Enough is enough, K8.  Be wise with your health.”

So, after the round with self doubt I decided to dwell on the positive.  I was am able to contribute significantly to month-end reporting and analysis last this week.  I am learning a new skill, with the help of a coworker, and I was able to use said skill complete a project all by my lonesome Monday today.  I was able to work around the house over the weekend without working myself to immobility.  I know that sounds absurd, considering the nature of this post, but it’s true.  My back was hurting long before last weekend.

I am making progress. I am making progress at a more deliberate pace than I, and most everyone but my doctor, would prefer. I am making progress because I listen to my body and allow it to have ups and downs.  As long as the next down is higher than the last I will continue to be upbeat and optimistic.  If ever the next down is lower than the last I will reassess and revamp my coping methods and treatment plan.

Thanks for sticking with me through this lengthy post.  Pardon any confusing bits.  I fear this evening’s painkillers have done a number on my thought-process… and my typing.

And a special thank you to my Twitter friends who suggested ice as a comfort for extreme back/spine pain.  I am using it, as I type.  I just pray it continues to help me, as I sleep.

Hooray! My Life with Fibro is 100 / K8 Introduces You to a Little Something New


I can barely believe it… but I’m thrilled.

Can you believe it?

That’s right.  My Life with Fibro is 100 posts old.

For all those who say fibrofolks can’t stick with anything… I smile in your general direction.  And for those who support fibrofolks, I give thanks.  Actually, I give thanks for the negative-vibe-sending people too.  They anger me and motivate me to prove them wrong.  (I’m pretty sure that’s how I made it through five years of college.)  And yeah, I know it took me 428 days to write 100 posts.  And yeah, I know that’s probably not an impressive pace.  But I’m going for sustainable, not rapid-fire.

And now, to celebrate this lovely occasion, I introduce you to a little something new:

AYA

And no, it’s not the Association of Yale Alumni (although I do love me some Rory).  It’s “A Year Ago: on MLWF.”  And here’s the first installment:

Following a Fibromyalgia Diagnosis – 9 Steps: I could finally call my discomfort a name…

Fibromyalgia, Pirates, and Wedding Vows: “With health as the less likely,” Daniel picks up the slack (without prompting from Justin Timberlake).

Fibromyalgia, Education, and Full-time Employment – part 1: I just thought something young and honest like, “He clearly has not seen my flawless GPA.”

Monday Night Dinner 004: Getting to Know K8


I never do this sort of thing, but I realized this would be a fun way for you to get to know me, beyond the fibro and fibro-related bits of my life.  And, it has an 8 in it, like K8.  And my friend Rochelle, of Learning to Trust, recommended I give it a shot.

8 Things I look Forward to

  1. Monday Night Dinners
  2. Weekends with family
  3. Yardwork
  4. Acambaro Fridays
  5. Saturday Morning HGTV
  6. Church
  7. Walt Disney World
  8. Our wonderful mattress, each night… and now

8 Things I Did Yesterday

  1. Church
  2. 3.5 hour nap (Seriously!)
  3. Laundry
  4. birthday call to Grandma J with Daniel, and Mom, and Dad
  5. admired the garden and the deck of the Douglas
  6. watered my herbs
  7. caught up on blogs
  8. updated my iBank

8 Things I Wish I Could Do

  1. live long enough to accomplish my goals
  2. be a patient advocate for fibrofolks, especially fibroyouth
  3. finish my book(s)
  4. sleep, like a “normal” person or operate on <5 hours sleep
  5. spend time with family
  6. attend BlogHer and TedMed
  7. 100 push ups (almost there!)
  8. meet my Twitter friends and fibrfolk friends

8 Shows I Watch (on DVR)

  1. American Idol
  2. Anthony Bourdain: No Reservations*
  3. Bones
  4. Glenn Beck*
  5. Lie to Me
  6. Mark & Olly: Living with the Tribes*
  7. MythBusters
  8. in-season dance show (ie: DWTS or SYTYCD)
    *I do not watch these shows regularly.  But sometimes during dinner or on the weekends Daniel and I will indulge.

If you’ve done something like this, comment with a link and I’ll be sure to read it.  I enjoy getting to know you and I will feel much less silly if I’m not alone in admitting I actually watch eight television shows.

I am off to bed.  I look forward to your links.

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