Sleeping Beauty – Fibromyalgia fatigue

Sleeping Beauty - Fibromyalgia Fatigue
No, I didn’t prick my finger on a spinning wheel like Sleeping Beauty, nor like Rip Van Winkle did I sleep for 20 years. However, a few weeks ago, I did sleep 32 out of 36 hours. I missed Wednesday and Thursday, most of Saturday and half of Sunday because I was sleeping. Had I allowed my eyes to close even once more, I know I would have been out again.
 

I was exhausted – physically and emotionally.

 
Fibromyalgia fatigue is unlike normal fatigue. It isn’t the tired you feel when you are young and party the night away. It isn’t the exhaustion you feel when you are a parent of a young child who refuses to sleep.
 

The persistent and chronic exhaustion that  comes with fibromyalgia can be debilitating.

 
I am fortunate that with the right supplements, medications and integrative therapies, I manage my fibromyalgia. I still have pain, but most days it is low. However, the overwhelming tiredness will not go away. I hit a wall each day about 2:30 p.m., and in order for me to get through the day and stay awake until 9 p.m., I must have my after-work nap. Without it, I simply cannot function.
 
Sleep Study

One of the first things I ask fibromites is if they have had a sleep study. It is important to know if other issues, such as sleep apnea, are affecting our quality of sleep. I had a sleep study done, which discovered that I have Sleep Maintenance Insomnia. I quickly fall asleep but I never reach deep restorative sleep because I wake up in the middle of the night and then I’m not able to go back to sleep. Now I take a medication that helps me sleep through the night, but unfortunately, I still do not feel rested when I awake in the morning. 
 
Every day, it is a struggle to prepare myself both mentally and physically to get out of bed in the morning and then to get ready for bed in the evening. I began giving in to the fatigue. I would go straight home every day after work and take a nap. Family health scares and stressors kept me from sticking to my “normal” bed routine. In November, I stopped taking my supplements due to financial reasons.
 
Fatigue

So, how does fatigue affect our daily lives? 

  • Makes it difficult to concentrate, creates “fibro fog”
  • Decreases our motivation and our desire to do anything
  • To-do lists take much longer to accomplish
  • Feel winded and exhausted after a short amount of activity
  • Creates a feeling of weakness or heaviness 

How can we manage our fatigue? 

  • Get up at the same time each day
  • Pace yourself during activities
  • Try to balance between activity and rest periods
  • Avoid over-exertion, which can increase symptoms and bring on a flare
  • Limit daytime napping
  • Avoid caffeine, alcohol and tobacco
  • Supplements
    • D-Ribose
    • Coenzyme Q10 Ubiquinone
    • Magnesium and Malic Acid
    • Vitamin D
    • Melatonin
  • Prescription sleep medications
    • Check for Medication Side Effects: Drugs taken for other issues may affect sleep or create sleep-related problems.
  • Low-impact activities
    • Walking
    • Yoga
    • Swimming
  • Complementary and alternative therapies
    • Acupuncture
    • Massage
  • Sleep Hygiene
    • Prepare for sleep by gradually reducing your activity level in the several hours before bedtime
    • Use relaxation tapes/yoga/meditation
    • Create a good sleep environment and routine
    • Maintain a consistent sleep schedule
    • Invest in a good mattress
    • Minimize light and noise
    • Keep the room at a cool temperature 

Fibromyalgia fatigue can lead to social isolation and depression. I began noticing the signs in myself. I started canceling plans I had made with friends. I slept more. I was so sad watching my friends go to concerts, art fairs and other activities when I couldn’t even get myself to sit outside on a nice day. I was just too tired.
 

My long sleep was my body telling me it was time to make a change!

 
Two weeks ago I started taking my D-Ribose, Vitamin D and Magnesium with Malic Acid. I noticed a slight difference right away. I started getting up during commercials and doing small chores around the house to increase my activity. I made myself work outside in the flowers each evening after my nap.
 
We all do it. It is easier to give in to the fatigue than it is to fight it. Baby steps. I am still tired, but it isn’t as bad as it was two weeks ago and today I am outside enjoying my flowers in the sunshine – and getting some good old fashioned Vitamin D!

 

What are your spoons worth?

What are Your Spoons Worth?
Originally posted on www.ProHealth.com • June 25, 2017

Like many people diagnosed with fibromyalgia, I have also been diagnosed with Chronic Fatigue Syndrome now known as SEID (Systemic Exertion Intolerance Disease).

What is SEID?

The five main symptoms that the new IOM considers key for SEID are:

  • Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue
  • Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort)
  • Unrefreshing sleep
  • Cognitive impairment
  • Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down)

Doesn’t sound like much fun, does it?

No matter what fancy name the medical community uses, to me it means that I am always tired. Every activity that I choose to do will eat away at what little energy I have each day. I have to decide after work if I have enough energy to go to the post office, bank, swimming, or if I need to go straight home for my 3:30 p.m. nap.

I am always looking for ways that I can save my energy.

Grocery shopping takes the most out of me. It doesn’t matter how rested I am when I start shopping, by the time I’ve made it through all of the aisles, waited in the check-out line, pushed the cart to the car and unloaded the cart into the car, I am done. It becomes an effort just to drive home. Luckily, my husband and daughter carry the bags upstairs to the kitchen and help put away the groceries because after shopping, I grab an ice pack and head straight to my chair for a few hours.

More times than I care to admit, I have gotten half way through the store and find myself staring at the shelves. I stand there in a mindless fog, and even though I have my grocery list, I am lost. It is hard to explain to someone who hasn’t experienced it. At that moment, I am unable to process my thoughts into words and feel as though I can’t go on. I have spent all of my spoons.

So, I was really excited when our town recently added an Aldi’s. It appealed to me for a couple of reasons. It is smaller (less walking), offers a greater variety of natural foods and is cheaper. I did my homework before going. I looked up the Wal-Mart price of everything on my shopping list so I could compare them to Aldi’s pricing.

One of the ways Aldi’s cuts costs is by having the shopper bag their own groceries. After I went through the check-out line, I pushed the cart to the bagging table. I didn’t think it would be a big deal to bag the groceries, but it turned out to be exhausting. Basically, I had to handle the items in the cart three times. First, leaning into the cart to take the food out and place it on the table. Second, I placed the groceries in the bags. Third, I put the full grocery bags back into the cart and finally, after pushing the cart to the car, one more time I took the bags out of the cart placing them into the car.

It took all my spoons, i.e. energy, to drive home and put away the groceries. Afterwards, as I was resting, I compared the prices between the two stores.

The total savings was $15.71. Was it worth it? I can think of a lot of things that I would rather spend my spoons (energy) on than grocery shopping.

To the healthy shopper, it probably seems ridiculous that I would rather spend an extra $15.71 than all of the steps it took to bag my groceries. It really is a struggle deciding between saving money and saving spoons. I need both. It has taken me years to realize how important it is to do everything I can to save my energy.

I am happy to report that I may even be able to save more spoons.

Some Wal-Marts have added a new grocery shopping feature called “pick up today.” You simply go online and select your groceries and the time you want to pick them up. There is no fee and the only requirement is that your purchase is over $50.00. You drive up to the door and they will put your bags in your car for you. You will want to check with your local grocery stores because I’ve heard this is becoming a trend.