What Is Your Worst Fibromyalgia Symptom?

by Karen Lee Richards Patient Advocate

This is a question I've been thinking about lately. Fibromyalgia (FM) has a lot of symptoms, none of which are fun. But which symptom is the most life-limiting for you? Which symptom most prevents you from participating in life activities?

I suspect a lot of you may say pain, which of course is the most predominate symptom of FM. Severe, uncontrolled pain can certainly limit your ability to work, play or even take care of your own personal needs.

But despite the limitations pain can cause, for some of you, other symptoms may impose even greater limitations. Fatigue, for example. The extreme fatigue of FM can be merciless – draining you of just about every ounce of energy, making it difficult to even drag yourself out of bed.

Speaking of bed, the inability to get refreshing sleep is a symptom that can definitely limit your life. Long nights of tossing and turning, unable to fall asleep – or falling asleep only to awaken an hour later feeling like you've been run over – only serves to worsen your pain and fatigue.

Or maybe fibro-fog is the symptom that most limits your life. The cognitive problems like memory loss, an inability to concentrate and a tendency to transpose numbers can play havoc with your life – especially if you have a job that involves working with numbers or intense focus. I once left a job because I worked with figures and I couldn't trust myself not to accidentally transpose the numbers. It wasn't fair to the company and I was a nervous wreck.

While pain, fatigue, sleep problems and cognitive difficulties are the primary symptoms of FM, most of us have an array of comorbid conditions as well – like Migraines, headaches, irritable bowel, irritable bladder, thyroid problems, restless legs, etc. Perhaps one of these overlapping conditions causes you the most problems.

My worst fibromyalgia symptom

For me, the symptom that most limits my life is my extreme intolerance to heat. Most people with FM have a problem tolerating cold and many also have problems with heat. But for me, it's only the heat that I can't stand. I love cold weather and feel my best when the air is cool and crisp.

Anything about 70 degrees is uncomfortable for me. As the heat rises, my skin becomes extremely sensitive and painful. I feel like it's an effort to breathe and my energy quickly drains away. If I can't find a way to cool off fairly quickly, the heat will trigger a flare that lasts for several days.

The reason I say heat intolerance is my most life-limiting symptom is because it's difficult to go anywhere in any season. In the summer, the problem is obvious. When all of my children and grandchildren get together to go to the beach, I can't join them because it will be too hot. I have to shop for groceries either very early in the morning or very late at night because I can't stand to go out in mid-day. In the summer months, I pretty much hibernate in my home with the air conditioner turned on full blast.

While the winter months are better because I can at least go outside, I'm still very limited when it comes to going into stores or visiting with family and friends. Most people turn their heat up higher than I can tolerate. I rarely even try to go to concerts or any kind of large gathering because it is almost always too warm for me.

Over the years, I've managed to find ways to get some degree of control over many of my FM symptoms but heat intolerance is the one symptom I haven't been able to improve at all.

What about you? What is your worst fibromyalgia symptom? Which symptom most limits your life?

Karen Lee Richards
Meet Our Writer
Karen Lee Richards

Karen is the co-founder of the National Fibromyalgia Association. She writes for HealthCentral as a patient expert for Pain Management.