Thursday, May 12, 2011

Fibromyalgia Awareness Day

Who ever said that pain is fleeting obviously never had Fibromyalgia.  Today is Fibromyalgia Awareness Day.  I was diagnosed with Fibromyalgia back in 1997.  I have no clue how long it went undiagnosed before 1997 but the pain was there long before the diagnosis.

I've blogged in the past about my Fibromyalgia pain and I'll keep blogging about the pain and suffering that I have to deal with on a daily basis.  Today I'm having troubles with my typing.  Its like my brain and fingers aren't cooperating.  I keep forgetting what I'm going to say and when I go to type it I type the letters out of order making the words unrecognizable.  Thankfully I have spell check.  Many of my fibro friends often complain about their lapses in memory.  Its as though our brains are on auto pilot and we do things out of habit then can't remember that we did them.  For instance, many of you readers can understand the, "did I lock the front door before I went to bed".  But for us it goes deeper.  For us its more of, "where did I leave my (insert noun)?" or the inevitable,   "did I take my meds?".  Its as though we are slapped with early onset dementia.  Its called Fibro fog.  The doctors are now saying that its because we aren't getting a proper oxygen supply to the brain.

Sleep is a big problem for me and many others that suffer with Fibromylagia.  When visiting my parents they would often complain about my nightly walks about the house and use of the bathroom hourly.  Well its not like I'd like to be up walking about the house nor using the bathroom each hour but its become a part of my life.  I too would rather be sleeping soundly for 6-8 hours but its not to be.  Not even if I take a sleeping pill.  Those with Fibromyalgia probably recognize the problem as frequent urination brought on by our constant dry mouth feeling, even if its not really dry, making it so we crave vast amounts of water.  Well the water has to go somewhere and I'm not yet wanting that adult diaper.

Most physically able adults get a regular amount of sleep each night ranging from 6-8 hours per night unless you are in the military and there are nights that you are lucky to get 5 hours of sleep.  But those hours of sleep are more than not continuous.   With continuous sleep a person is able to reach the deeper levels of sleep which help repair the body.  A person with Fibromyalgia does not reach the deep levels of restful sleep and is usually stuck in the light sleep stage and is awakened quite easily.

As for the walkabouts at midnight, well I can't lay there all night in pain keeping my spouse awake.  So I get up and go do something  to deal with the pain and pressure on my back.  That leads me to the tender points.

Before you go and try to hug a person with Fibromyalgia ask them first if they are able to be hugged today.  Be prepared to get a resounding "NO".  Don't be upset, its just that there are days that the tender points are that tender and your hug might feel extremely painful to us.  Today is one of those days for me.  Seems as though everything on my left side of my body just aches.  Sitting here typing is hurtful as the chair back is pressing into one of the tender points and my left shoulder is hurting with the exertion of typing.  Mind you I just had to go back and type in Left because I had typed in Right instead.  Damn Fibro fog.

 Dining out being a person with Fibromyalgia can be tricky.  My husband has learned to deal with my IBS, GERD, Spastic Colon related Fibromyalgia problems.  From day-to-day my diet could change.  What I could eat yesterday might not agree with me tomorrow.   So its a good thing that I am still able to cook for myself.  I don't eat at many fast food restaurants as their menu's are quite limited.  I'm better off going to a regular sit down restaurant and ordering off the menu so that I can opt for substitutions.  Added to the food allergy problems and digestion issues is the fact that I have to be on a really low sodium diet of no more than 1,000 mg per day.  Oh and I'm not allowed to have caffeine either.  Most folks with Fibromyalgia are told to swear off the caffeine and American chocolate plus any food with chemicals in it and not natural ingredients.  American chocolate is mostly chemicals.  European chocolate, much better tasting, has real ingredients in it.  Go check the labels for yourself.

Now for those of you that are really tired of reading my long blog post and have decided to skip to the bottom here since I was whining above, here are some links for more information on Fibromyalgia.

Spoon Theory   this theory also applies to those with Fibromyalgia and is a decent summary of how we figure out what we can do each day.

One last bit of complaining.  Fibroymyalgia means that I often don't want to go anywhere, it doesn't mean that I don't want to be your friend.  It just means that I'm in too much pain that day to want to do anything more than try to take care of myself which in itself is like climbing a mountain face with a wheelchair.

1 comment:

  1. Thanks so much for stopping by my blog today and commenting on my rental car fiasco. I agree that we as consumers are seriously being forced to do ridiculous things for simple services!

    Thank you for posting this blog about Fibro. It was a very educating experience and a peek into the suffering that you face. I will pray that you and others suffering from fibro can have some relief.



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