Living with the limitations of fibromyalgia is a fine balancing act.
[Original post: July 2016 – Updated December 2020]
Hi! My name is Carrie and I was diagnosed with fibromyalgia in 2014 after receiving a primary diagnosis of Ankylosing Spondylitis in February 2009. I was doing well for my first few years with AS until fibromyalgia hit me like a freight train.
Life has had a lot of ups and downs since then, but one thing has been consistent and right by my side the whole time – fibromyalgia.
Living with fibromyalgia is one of the hardest lessons I’ve ever had to learn. I live with severe lifestyle limitations because of fibromyalgia.
When you’re living with such huge disabilities, it’s natural for your quality of life to go down as you lose core strength and energy.
Nothing with my health has changed since I wrote this article in July 2016. I’m not any better. I’d say I’m not much worse either. I’ve been housebound for close to three years now. I leave my house once a week if I’m lucky.
Over the years, it has become apparent that I can spend 2-3 hours outside my home before I start risking a flare. It’s important to try to limit my time out to 2-3 hours. There is always a payback to leaving my house and doing any walking if it exceeds more than 3,000 steps per day.
Knowing how much walking I’ll have to do and how comfortable I’ll be when I’ve left my home is a must for every fibro patient.
This article explains post-exhertional malaise and how flares crop up with too much activity. It also outlines my hard lines and boundaries in order to live successfully with fibromyalgia.
One of the biggest challenges with chronic illness is learning how to live with the limitations of fibromyalgia.
Fibromyalgia creates pain, autoimmune fatigue, and poor sleep patterns that don’t allow patients to cope with day-to-day activities at times.
Writing about the limitations of fibromyalgia lets others know what we live with on a daily basis. These limitations can range from small disruptions to severe disruptions that leave people housebound.
Sometimes I knowingly surpass my limits if I want to do something. I also have hard lines that I never cross.Having an understanding of my limitations with fibromyalgia has allowed me to learn a lot about my body. Click To Tweet
I’d wager I know as much about my body as a world-class athlete does, only I’m on the opposite end of the spectrum as a world-class weakling. Muscle fatigue is brutal. Think of how weak your legs feel after you’ve gone for a run. I experience this every day and all day. My leg pain gets worse throughout the day. By 5pm, I’m usually at the end of my energy reserves and rest is best.
Today, I’m writing about a few of my limitations with chronic illness while recovering from a two-and-a-half-hour walk with my dad this morning.
This walk happened in 2016 and I’m really glad I did this with my dad when I was able to. I’d need a wheelchair to do this now.
Our tour of Carleton Place High School where my dad taught and coached me during my time there happened years AFTER I graduated. It was a wonderful walk down memory lane. I’m so grateful my body held up long enough to do this one last time.
Running these halls, literally, was nothing to me in high school. During winter snowstorms and rain, we used these hallways for track and field practice!
After our tour, I was in an immense amount of pain. I forgot how big the school is and how many stairs I climbed in high school. And I experienced a PEM crash and severe muscle fatigue after we got home.
Patients with fibromyalgia struggle constantly with extreme muscle fatigue.
I can’t speak for all fibro patients, but typically, I hear very frequently that many patients have issues with upper body pain and weakness. Muscle fatigue doesn’t just hit my legs. My fibro and AS are disabling, and I can’t lift or carry things without experiencing severe consequences.
Exercise makes me worse. Walking for more than an hour leaves me feeling utterly drained. I’m not kidding when I say that even standing for 10 minutes quickly turns into agony.
Patients like me walk a fine line between doing any exercise and overdoing it.
It is SO easy to overdo things. I have to keep a close eye on energy reserves.
For example, I can conserve energy by keeping my my arms crossed over my body. It also helps because I feel less pain if my arms aren’t hanging down.
Working at not lifting things is hard because my instinct is to help. I don’t want people to think I’m lazy. But helping and lifting or carrying things always impacts my health within a matter of hours.
It feels like a grizzly bear ripped my chest and upper back wide open. Doesn’t that sound crazy? This is a classic example of fibromyalgia pain.
This is why I pick and choose what I carry and how much activity I engage in. It is a form of self-preservation.
Sense of smell is another example of living with limitations of fibromyalgia
A few months ago, I was driving with my husband. When I got in the car, I noticed the strong odor of gasoline. My head started pounding within minutes.
Within 10 minutes, I was dizzy, nauseous, and a migraine was starting. My throat started closing up and my lips went numb and started swelling. I couldn’t think straight.
When I got away from the smell of gas, my throat stopped swelling. My lips and tongue stayed numb and swollen for the rest of the night and the headache turned into a migraine that lasted three days.
We ended up getting rid of that car because my husband couldn’t fix that problem. Certain smells trigger me right away. It’s impossible to avoid, so if I know I’m going to be running into something like that, I don’t do it.
It took me a long time to realize that some things aren’t good for me.
People with fibromyalgia are sensitive to smells, lights, touch, foods, sounds, and more. Learning about an offending smell or environment allows us to protect ourselves from it.
Concerts or sporting events are out. I can’t do them. After seeing the Senators play the Coyotes in Phoenix in December 2015 with my family, I spent the next few day in bed in a dark room.
Shortly after this, my MECFS moved from mild to moderate.
I can still decide to do something that I know might make me sick. I just have to decide if I’m willing to pay for it afterwards.
This is why I plan in advance. My level of participation is determined by how much I want to do it, despite the consequences.
I explained to my mom the other day that my limitations of fibromyalgia fall into three categories:
Category 1: Nope. I’m Not Doing It.
This category includes activities, events and things that are not healthy for me. I always learn about these things the hard way. I’ve found that it’s best to avoid situations that fall under this category completely.
Examples: Staying away from triggering smells, saying no to activities that require physical effort, vacuuming or mopping etc. Absolutely no sporting events or concerts. The strain of attending plus the lights, noise, motion make me very sick. Impossible.
Category 2: Once In A While
Category 2 is reserved for things that bother me just enough to say no if I need to. If it’s an activity that I know causes me pain, I don’t do it unless it’s a special occasion.
Examples: Weddings, family reunions, and get-togethers all fall under this category. I can also perform on stage every once in a blue moon. (Likely a yes at a last minute request.) I am strict about which events throughout the year.
In 2020, I attended less than a dozen events and was extremely strict with my time limit.
Category 3: Maybe, But Today Is Not A Good Day To Try
This includes everything from activities, events, and relationships that I find tolerable when I am feeling well, but that sap my energy when I’m not feeling well. I make my decision based on how I feel that day.
By knowing my limitations, I can protect myself and use self-care. It’s good to say no every once in a while. We can all learn from paying attention to what is and isn’t good for us.
I’m ending with some good news: Since writing this post in 2016, my advocacy work for fibromyalgia has paid off. I’ve continued to update this post each year because it has been shared widely.
I’m so proud to say that My Several Worlds has earned Healthline’s Best Blogs about Fibromyalgia in 2020. This is the third year in a row I’ve been acknowledged for this award. It’s moments like these that give me the courage and motivation I need to keep writing and to keep sharing about my journey with fibromyalgia.