Chronic Lyme Disease Summit 2

A to Z Challenge, Day 5: E is for Energy #atozchallenge

If you know anything at all about fibromyalgia, you know that it's not just a chronic pain condition, but that its other main feature is indescribable fatigue and lack of energy.  For me, personally, the energy problem is more disturbing than the pain.  I think it's because I've had chronic pain (migraines and painful menses) ever since I can remember.  Pain, I know how to deal with.  Thankfully, for me, over-the-counter meds usually help.  I guess one might say I'm an expert at living with chronic pain.

But the fatigue, lack of stamina, and energy-drain that is inherent in this affliction is not only maddening, it is also unexplained.  No one knows what causes this problem.  People with Chronic Fatigue Syndrome have the same problem, only it is the main symptom of their affliction.  I think some day, so-called "experts" will consider the two afflictions the same disease.  Right now they are separate entities.

For people with fibromyalgia, even when we eat foods that are supposed to produce energy, even when we sleep a whole night, even when we remain active, we have a problem maintaining normal energy levels.  Most days, we wake up exhausted, so we are already in a deficit position before we even get out of bed!

There's this thing called "push and crash" that people with fibromyalgia know all too well.  On days, or partial days (because that happens) when we feel energetic, we overdo it.  That's the "push".  And then we pay the price in crushing energy failure later on that day, that night, or the next day, or even for several days afterwards.  That's the "crash".  Pushing and crashing is not a good thing, but when you wake up and find yourself actually having energy for a change, it is way too tempting to: walk the dog, wash the car, do a week's worth of laundry and grocery shopping and mow the lawn -- all before going to work for 8 hours!  Ok, I'm exaggerating just a tiny little bit, but not too much.  The crash is inevitable, but like the spouse of an alcoholic, hoping things will be different next time, we do it anyway and expect different results.  Then, we end up in bed, incapacitated, or exhausted-but-functioning for days on end.

What is the cure for energy problems in fibromyalgia?  Well, if I knew that, I would probably be a billionaire.  As I say with every symptom of this cruddy invisible illness, the only thing that works (for me) is "management".  Management of symptoms, management of my time, management of my schedule.  My naturopath has tried to give me a number of different supplements for energy:  D-Ribose made my IBS flare up so we nixed that one.  She now has me on CoQ10.  I'm not sure if it's working, it hasn't been long enough.  I sure wish we could find some quick fix for this, but honestly I've tried everything, even changing what I eat (gluten free, dairy free, etc. etc.).  Nothing works.  That's the problem with fibromyalgia:  it just exists.  There is no cure, and most treatments work temporarily, if at all.

I insist on still doing all the things I used to enjoy.  For instance, next week I'm going to a concert.  I go to a lot of concerts.  I love music, I don't like crowds, but I love seeing my favorite artists live.  But I know that I will pay the price, dearly, after the show.  I've learned how to manage this by trying to take a day, or a couple hours, of rest prior to the show; and leaving my schedule completely open the day after the show.  That way, I can rest, nap, eat right, etc. and still enjoy the show.  It's not at all perfect, and I still "pay for it afterwards".

More upsetting to me is the day-to-day stamina and energy problem.  I can't stand it.  Since I don't have to be to work until noon each day, I generally stay in bed with my dogs until 9:30 or 10 a.m.  I feel like a waste, I hate that I have to do that, but I need rest.  Activity of any kind completely destroys my energy:  taking a shower, making breakfast, feeding the pets, getting dressed, checking my email or social media.  All of it saps my energy before I've even gone to work!  I tend to "rally" around 4 or 5 p.m.  I do not know why, but my best energy is between the hours of 4 p.m. to 10 p.m.  That doesn't mean my energy is normal, it just means that's "my personal best" energy time of day.  Notice how it is the opposite of most people who have the afternoon "slump" as it's called?  I have always suspected that fibromyalgia is related to circadian rhythm in some way, but no studies have been done about that (yet).

There's a thing called "The Spoon Theory" which was written by a person with a chronic illness.  This method of energy preservation suggests (quite well) that you should envision a drawer of spoons and that you have only so many spoons in the drawer to utilize each day, so spend them wisely.  I wrote a similar thing like this called "Accounting 101" (but because of fibro-fog, I can't find that essay!) in which I explained that the amount of daily energy you have is like a bank account, so spend it wisely!



Many thanks to Fibromyalgia english/afrikans for the spoon pic!


Ok, I literally Tweeted this two seconds ago, and the next thing down on my Twitter feed was this video!!    How awesome is that?!

Comments

  1. I have endometriosis, and the fatigue, especially on pain days, is overwhelming. The associated guilt of not being able to do much gets too much some days.

    Flip x

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    Replies
    1. It sure does! I hear that. Endo is an auto-immune disease; I often wonder if they'll ever determine that fibro is, too (because I really think it is). Thanks for sharing your comments.

      Delete
  2. Fist bump! I have severe RA at 36, which I've had since being a teenager. I loved your practical tips today, thank you. :)

    ReplyDelete
  3. I just want to let you know that I nominated you for a Liebster Award. It’s basically a way for bloggers to show appreciation for their own favorite bloggers, while learning more about each other and gaining some readers along the way. If you’d like to participate, just visit my blog for the details and questions. If not, then act like I was never here! Just know that I enjoy your posts and have a great day! :)

    ReplyDelete
  4. I just want to let you know that I nominated you for a Liebster Award. It’s basically a way for bloggers to show appreciation for their own favorite bloggers, while learning more about each other and gaining some readers along the way. If you’d like to participate, just visit my blog for the details and questions. If not, then act like I was never here! Just know that I enjoy your posts and have a great day! :)

    ReplyDelete

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