No pain? ~ More brain?

Originally posted January 28th, 2016 on

lgimage_23192Given the choice what would you choose

No Pain or No Brain Fog?

I asked a group of Fibromites and the majority of those asked responded answered “no pain”. I disagreed, I answered “No Brain Fog”.

Fibro fog is so frustrating. If I could choose between pain and fatigue or brain fog. I choose pain and fatigue. I get so stressed out when I mix up words, am unable to form a complete sentence or am so easily distracted.

My Fibro Fog is not nearly as bad as it was 2 years ago when I forgot to keep up on my medication refills and realized that I had ran out on a Friday night. I was not able to get my refills until Monday and had no idea how quick I would start going through withdrawals.   It was one of the worst weekends I have ever experienced.

I spent all day this past Saturday remembering what I had forgotten to do earlier in the week. All of my non-fibro friends and family continue to tell me that it “happens to all of us as we get older”. This is not something someone with Fibromyalgia wants to hear. Honestly, that statement scares me to death.  If it is “normal” for us to lose our cognitive skills as we age will we actually notice a difference? or will it increasingly get worse? 

Why is this happening to us? Which comes first the chicken or the egg?  or in this case the Pain or the Brain Fog?

Studies show that the cognitive dysfunction caused by Fibromyalgia is because our brain is so overwhelmed with pain signals that it can not process, retain or recall information.

So why am I still having memory problems if I have been able to find the right mix of treatments to keep my pain at a manageable level?

I had a sleep study and the results showed that I have sleep maintenance disorder, which means I do not ever reach the REM sleep. I recently learned that during the sleep stage 4 it is the time that our body reaches the restorative healing sleep. It is also when our short term memories are turned into long term memories.  At least it can account for some of my memory loss.

Three years ago, I was driving home from work one day on the same roads I had been taking for 20 years. I took the wrong turn. It devastated me. I suddenly was looking around thinking where was I? I have a very long list of similar forgetfulness but ironically I can’t find it.

Last year while at my new job my students and I were conducting a lima bean experiment and they decided they wanted to know how they tasted cooked. I told them that I would take them home and cook them. The next day they asked me if I had brought them. I replied, “UGH! No, I forgot last night to cook them”.

Finally (I am embarrassed to say how many days later I remembered to cook the beans). I cooked them and put them in the refrigerator.  The next morning my 2nd grader asked if I remembered to cook the beans – “yes, but I forgot them in the refrigerator.” “Make a note” she said. I wanted to cry but instead, I laughed.

If she only knew how many notes I had in my bag, my purse, on my counters and by my chair. So, then the next morning I pulled the beans from the refrigerator and put them on the kitchen counter beside my water bottle. I went back to the refrigerator to get my lemon, I cut it up and put it in my water bottle.

I was excited for her to ask me, “Did you bring the beans?” I got to class and began to prepare for my students when I reached in my bag… yep, you guessed it. I left the beans on the counter. “Again?” said my 4th grader. “you need to make a note”.  She didn’t wait to see if I was going to write a note. She grabbed one of my post it notes and wrote on it “Bring beans please”.

Forgetting the lima beans was not causing any harm to anyone other than making me look bad to my students. This kind of forgetfulness happens all too many times when things really do matter.

The difference from now and 3 years ago when I couldn’t remember how to get home is my work environment.  I was working a very stressful job, in so much pain and when we are in stress and pain our brain is too busy to think and remember.  I have also learned what are some things I can do to help reduce some of the brain fog.

What are typical Fibro Fog symptoms?

  • Difficulty recalling words or names, the use of incorrect words and expressing thoughts/emotions
  • Forgetfulness, difficulty remembering where you put things, forgetting what you are doing, unable to recall what was heard or read
  • Easily distracted, difficult to pay attention to more than one thing at a time
  • Not knowing where you are going or where you are, not recognizing your surroundings, impaired sense of direction

What can we do to alleviate some of the brain fog and improve our cognitive abilities?

  • Rest your body
  • Keep a daily routine.
  • Plan your days: Use 1 to-do list and 1 calendar.
  • Use Reminders & Alarms; Smartphones have amazing apps to remember everything.
  • Focus on one thing at a time.
  • Meditate/Calming Exercises: meditation, gentle yoga, water classes,  listening to music
  • Breathe: Fibromites forget to breathe; we tend to hold our breath or take shallow breaths. Slow deep breathes will help increase the oxygen and the blood flow in the brain. Cold ice on the forehead can slow down the feel of panic/anxiety.
  • Exercise: Exercise creates endorphins that help eliminate pain and fog.
  • Practice Good Sleep Hygiene:  Stick to a bedtime routine, use a sleep mask, a good mattress & pillow, darkened room & light noise.
  • Eat a Healthy Diet: Avoid processed foods, gluten, sugar, caffeine and various food additives and preservatives which can make pain and brain fog worse.
  • Supplements: B vitamins, omega 3, Ginkgo biloba and magnesium.
  • Play Games – Puzzles, brain teasers, scrabble and word finds.

The#1 thing to remember:

Don’t Freak out when you forget things.

Early on in my illness I forgot my parent’s phone number. I had always dialed it. Never speed dialed. I sat there staring at the phone bawling. Another time, I couldn’t remember what locker I had put my clothes in at the pool. Again, staring at the lockers and bawling. All that accomplished was for my emotions to take over and the panicking lead to a major increase in pain.

The most important thing to do is to STAY CALM

and remember you are a

Fibro Warrior ~ Living Life!

fibrowarriors logo

Are you a man or mouse?

Are you a man or mouse?

We were instructed at my job this week to read the booklet – “Who Moved My Cheese?” by Dr. Spencer Johnson. If you have read the story this blog may make more sense to you.
I promise if you keep reading – it relates to “This is my live ~ Surviving Fibromyalgia”.
The opening states that sometimes we act like the 4 characters in the story.
The four characters show how they each react differently to change.
Change is the one thing that is inevitable. Our daily routine of going through the motions make us forget that life is constantly changing around us.
Our initial reaction to change is to resist it because we are afraid of the unknown. Then when change happens, we stress out and react or hide.
It is trying to teach us the following: “Quoted from Dr. Spencer Johnson”

  • Change Happens. They Keep Moving The Cheese
  • Anticipate Change. Get Ready For The Cheese To Move
  • Monitor Change. Smell the Cheese Often So You Know When It Is Getting Old.
  • Adapt To Change Quickly. The Quicker You Let Go Of Old Cheese, The Sooner You Can Enjoy New Cheese.
  • Change.Move With The Cheese
  • Enjoy Change.Savor The Adventure And Enjoy The Taste Of New Cheese

Keep reading – I’ll get there….
Our Employer’s told us to write how this story relates to us and our job.
I had several thoughts:
My smarty pants reply was ”Are they trying to tell me that there is better cheese out there and I should go look for a better and different job with more cheese?”
My written reply was that I have been faced with many work changes over the past few years and that though I am one that does not like change. I have learned to adapt and continue to look for new things that I can do to help my workplace.
I wanted to say that I have always been the Character that stayed put and watched the changes occur around him. I have stayed as I have watched good and bad policies come and go, watched both good and bad employee’s leave, seen friends move on to look for their new cheese. They were like Haw. They too were scared but excited with the new change. I stay because I don’t like change. Fear has been the driving factor most of my life. I like comfort.
I have moved a total of 2 times in my life. I have worked 2 jobs in the last 20 years. I will be at my current job for 19 years this June. It is safe to say that I don’t like change.
If you have not read “Who moved the Cheese”. I encourage you to go online and read it:
After you read the story – Ok… stick with me – Here it is… this really does relate to Fibro.
I could not tell them (my Employers) that while reading the story – I was internally screaming – “This guy is getting paid to write this “Inspirational” story”. While writing and re-writing this – I tried verbally to get my thoughts across. All that I could manage was tears while I was explaining it. I feel so strong about the last paragraph. So upset and frustrated at the hidden illness and struggle that is endured by so many. Don’t get me wrong – I understand the purpose of the story. The past 2 years of my life – I have had to work my way from being a person that resists all change like Hem to strive to being a mouse.
I like my other Fibro Friends have no choice. If we do not react like the mice (searching for something new – willing to adapt) then we will not only become like the Character Hem (not willing to change) but much more worse. We will end up not leaving our homes, we will be swallowed up in our pain and our depression. Fibro and it’s evil sidekicks love to surprise us all the time with new symptoms and new diagnosis. We have to live the story. We have to anticipate not only what could happen in a reaction to what we have done but what we have not done.
We have to be ready to change to not find our cheese but to SAVE OUR SPOONS.