What is it like living with Fibromyalgia?

Fibromyalgia also called fibrositis is a complicated condition.  It has no specific causes, widespread muscle pain and tenderness, it is accompanied by fatigue and altered sleep, memory and mood.  Treatment can help the symptoms, but this condition cannot be cured.

I was diagnosed with Fibromyalgia in my mid-thirties.  I believe I had suffered most of my life with symptoms but it took years for a diagnosis as doctors know very little about it, and how to treat it.  I kept being told by others “but you look fine, I can see anything wrong with you,” and doctor after doctor said “We do not know what is going on with you.”

Symptoms Experienced By People Living With Fibromyalgia

  • Pain in the muscles, abdomen, back and neck ranging from chronic, diffuse, sharp and severe
  • Entire body fatigue, muscle spasms, gastrointestinal problems
  • Mood swings, forgetfulness, lack of concentration, sensation of coldness and tingling in the hands and feet
  • Pins and needles, pain sensitivity, electric shock feelings
  • Sleep disturbances, cold sensitivity, headaches, and  joint stiffness

These are the symptoms to name a few.

Here Is What It Is Like To Live With Fibromyalgia Every Day

I will make a to do list and pick only four items to accomplish, if I try to do more than that, the next day I can only do two things.  I have to carefully balance my activities and how much energy I use every day. If I over do it I will get a flare up and have no energy for the next 3 days to two weeks.

Slide you feet across the carpet, now touch a metal doorknob and think about how that shock feels against your fingers, now do it again and again and again. Fibromyalgia effects my central nervous system, my body’s pain response is amplified.  I experience these electrical shooting pains on a regular basis and they are worse and longer than a static shock.

Run a 10k.  You have no time to prepare or train.  Just go out and run it, no walking allowed.  How your aching muscles feel the next day is how I feel most days when I get out of bed.  The feeling continues through most of the day, and pain medication does not help.

Turn your thermostat down by 10 degrees.  You’re not allowed to put on additional layers, you wont find a comfortable temperature until things warm up in the summer, at which point you will suddenly be far too hot.  My body does not regulate its temperature as well as it used to.  I am always freezing in the winter and in the summer I am usually cold until suddenly I am too hot, there is no happy medium.

Call in sick for at least three days each time you get a flare up.  Do you still have a job at the end of the year?  I never know when I’m going to have a flare up, and flares make it impossible to work. My only solution was to quit my nursing job of 18 years and start a home business freelance writing from home.

One of the most annoying symptoms is ‘brain fog’ the doctors call it.  Some days it feels like you’re living in a fog of confusion, and there’s nothing you can do to get yourself together.  Putting your keys in the fridge, forgetting what year it is, getting disoriented on a basic route back home you have driven hundreds of times before.

woman in black sports bra and black shorts
Photo by Polina Tankilevitch on Pexels.com

I have learnt a few things that really help in living with this insanely challenging condition:

Take a hot bath or go to a mineral hot pool.  Soaking myself in a very hot bath reduces the pain, the added benefits of minerals such as Epson salts helps temporally.

Keep moving, exercising – but not too much, a short walk, yoga and gentle movement prevents the feeling of ceasing up.

Clean in bursts.  Stop while you still feel good or I will fare up, about one hour.

Laugh every day.  Somehow a good laugh makes the pain feel a little less, staying positive is vital.

Prioritize sleep.  Sleep and pain are inextricably linked, my top priority is to set a solid seven to eight hours sleep every night minimum.  I change positions, use pillows whatever it takes.

Three words, cats, chocolate, coffee.  Cuddle up with your cat or pet with a block of chocolate and a hot cup of coffee.  Studies have shown that petting an animal reduces stress, dark chocolate is anti- inflammatory and coffee can give me an energy boost.

Go on a Netflix binge.  Sometimes the only thing that helps with chronic pain is to distract yourself. 

Do not compare yourself with others, ‘normal people.’  People without a chronic illness often give people with fibromyalgia well- meaning but bad advice. 

Keep a trigger journal.  Look for patterns in what foods and activities cause symptoms to get worse.

Consider a CBD tincture. Thanks to legalization in many places marijuana and related products, CBD (cannabidiol) oil has become popular for treating many types of pain conditions, including fibromyalgia.  It helps with pain, brain fog, and fatigue.

De-stress.  Stress triggers fibromyalgia.

Jot it down.  Brain fog hurts my focus and memory, I keep a pen and paper handy.  I make to – do lists to help me remember topics I want to talk to family and spouse about, shopping lists, phone numbers, and addresses I carry round with me.

Take some “Me time” every day. Loose yourself in a hobby, put on some music, practice self-care, rest, whatever makes you feel good.  This brings more balance to my life, reduces stress and boosts my energy.

Just say no. People may forget that you need to prioritize and pace yourself.  When weighing activities, favors, or invitations consider if they keep you from the rest, exercise or relaxation you need to feel well.

Make your bedroom a sleep sanctuary.  To get enough rest, set the mood for sleep in your bedroom.  Reserve the bed for sleeping, keep the room dark, quite, cool and distraction – free.  Keep regular sleep hours and ban the computer and late night t.v. Instead, wind down with relaxing music or a warm bath.

I hope others out there living with fibromyalgia and other pain conditions find these tips helpful and through writing this article I can shed some light on this mysterious illness.

Elise Brooke

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