What's it like living with Fibromyalgia? By Elise Brooke.

This is a question I am asked often.

I was diagnosed with fibromyalgia in my mid-thirties. "I believe I have 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't see anything wrong with you,” and doctor after doctor said, “We do not know what is going on with you.”

The day I was diagnosed.

Extract from "The New Zealand Dream, Growth and Destruction."

"It became more and more difficult for me to work. I would come home from work exhausted. My body hurt nearly all over, and my hands were so painfully. I could not open them fully at times. I could not understand it. Why was it so hard for me to cope? Other single mothers, I knew worked more hours than me and managed fine. Other symptoms arose. My hands would shake for no reason, and my legs would swell up bright red. I would get strange jabs throughout my body randomly, like electrical shocks and pins and needles. My legs felt like concrete blocks being dragged along. It felt as though someone’s heavyweight was sitting on my shoulders. No amount of paracetamol or pain reliever would ease the pain, and it never stopped.

Desperate for help, I made an appointment with doctor after doctor. One replied this, another replied that; one thing was clear, they had no clue. I was given this test and that test, still no answers or any clue. The third doctor I went to was different. He took me seriously instead of giving me the look of ‘this must be in your head.’ He referred me to a specialist. More tests confirmed it. I was diagnosed with a condition called fibromyalgia. It felt fantastic to at last have some answers, but the bad news was there was no cure. In fact, little was known about this condition, and doctors were in the dark on how to treat it. All the doctor could offer me was to treat the symptoms with pain medication and give me something to help me sleep at night.

This threw me into a great depression, shattering my dreams and goals. I cried and cried, slept and cried some more. I realized in order for my body to heal or at least cope, my mind had to stay strong. I slowly pulled myself up and carried on. I cut my work hours back to part-time so I could manage better and involved the kids in household tasks."

Symptoms I experience living with fibromyalgia are;

Fibromyalgia, also called fibrositis, is a complicated condition. It has no specific causes. Here are some of the symptoms I experience;

Pain in the muscles, abdomen, back, and neck ranging from chronic, diffuse, sharp, and severe. Whole-body fatigue, muscle spasms, gastrointestinal problems. Mood swings, forgetfulness, lack of concentration, a 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, 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 overdo it, I will get a flare-up and have no energy for the next 3 days to two weeks.

Slide your 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 affects 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 won't 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 of fibro 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.

I have learned 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 help temporally.

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

Clean, do tasks in bursts. Stop while you still feel good or risk a 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.

Practice mindfulness and be among nature.

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 around with me.

Take some “Me time” every day. Lose 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, quiet, 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.

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