23 'Red Flags' That Might Mean a Fibromyalgia Flare-Up Is Coming


A fibromyalgia flare-up may consist of widespread pain, extreme fatigue or difficulty with memory and concentration, commonly known as “fibro fog.” But many with fibro may notice other “red flags” that often appear in the hours or days leading up to a full-on flare. Sometimes a flare can be triggered by your external environment, such as a change in weather or a stressful situation, but other times you may only notice internal signs, like stiffness, pain or a sudden shift in mood.

These “warning signs” vary from person to person, and some don’t get any “warning” at all. So we asked our Mighty community to share their “red flags” that might mean a fibromyalgia flare-up is coming. Some of these may be signs you notice, too.

Here’s what the community told us:

1. “If I overdo it. If I do too much and I start to hurt really bad at the end of the day, then I know I am going to be down at least the next two days.”

2. “I get very, very cold and can’t get warm no matter how many layers I put on or how many blankets I pile on top of me.”

3. “My body feels like it’s systematically shutting down. I get ‘fibro fog’ and my muscle tone weakens. I start to drop things. I can’t get a good night’s sleep. I lose my balance more. I become more anxious because I know what’s coming. And then the waves of pain and agony start to set in and I pray I won’t be entirely bedridden.”

4. “My skin. My scalp. Everything hurts. Wearing a bra or even a loose-fitting shirt becomes almost unbearable. I also become even more sensitive than I already am to heat and cold.”

5. “If I don’t get enough sleep, I get intense pain all over my body and it lasts for days.”

6. “My fingers tingle. They start to burn like they’ve been dipped in acid, and it spreads into my hands and up my arms. Other times I just feel lightly sunburnt. My skin everywhere just feels a little too tight and sensitive to touch. It all goes downhill from there.”

7. “Feeling pressure all over my body. It honestly feels like an elephant is sitting on top of me.”

8. “Usually, two things happen. First, my arms flare from my shoulders to my fingertips. It’s flu-like aching with the extra intensity of nerve pain. Secondly, I get oddly shaped red spots between the knuckles on top of my hands and feet. Usually the brighter they are, the more I hurt.”

9. “My flares always start with trouble concentrating and forgetting things as they happen, which brings on extreme irritability.”

10. “Usually I get tinnitus and a migraine, and my ears get really red and hot.”

11. “I don’t always get warning signs but when I do I get very moody and have to be alone.”

12. “When I have a good day, am pretty high energy and get lots of little things done, I start to feel in my muscles and head that the rush is too unusual, and know that in just a few hours I will feel like I’ve run a marathon up Mt. Everest.”

13. “I start feeling stiff or I eat something and I get nauseated. Then I know it’s going to just get worse from there.”

14. “My legs ache from my ankles to my knees. Sometimes my feet swell.”

15. “Hormonal or seasonal changes, whether period flares or temperature difference flares. However, I always notice I wake up feeling like I’m fighting the flu: I have major body aches, everything hurts including hair follicles and scalp and my lower back/hips will lock. This normally tips me off to an oncoming flare.”

16. “Nausea and body aches that always start in my hips, upper back and hands. Hot flashes and exhaustion. I’ll sometimes get a red flushing color across my face.”

17. “For me it starts with feeling tired, which quickly turns to exhaustion. I become extra sensitive to temperature and get dizzy whenever I move around. I start to feel weak and then my ‘normal’ pain goes from bad to worse really quickly.”

18. “Swollen glands and a tender scalp. Weird, right?”

19. “I start getting blisters in mouth on my lips and tongue. L-Lysine does help with these, but they’re my first indication of a flare.”

20. “Moderate surprise pain coming and going in one place, like a hand or even a fingertip! Tender points get worse. I get very lethargic. Lifting or carrying things can produce undue pain.”

21. “I start twitching or get tics. Really strange!”

22. “Mine are so unpredictable. I don’t get that warning.”

23. “For me, it’s having an even further decrease in appetite, days of insomnia and trying to convince myself I can ‘keep up the mask a little longer and push through.'”

What are some of your “red flags” that might mean a fibromyalgia flare-up is coming? Share in the comments below!

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What My Friends Should Know About My Life With Fibromyalgia


Dear friend,

As you know, I have fibromyalgia. Some days are good, others are not so good. I wanted to tell you a few things about my condition and my new life I have learned so far.

– Some days, I cannot get out of bed. I am not blowing you off or ignoring you, I just have to rest.

– Sometimes I wake up feeling like I ran a marathon the day before or got hit by a car, because everything hurts.

 

– Yoga, essential oils, chiropractic care, acupuncture, massage or anything else you suggest from the internet is not going to cure me. Help me, yes, but not cure.

– Some days, I forget what I just said, why I walked into a room or what I need to do for the day. It’s called “fibro fog.”

– Even though I may not look sick, I don’t feel well.

– I refuse to let pain consume my day, so most of the time I am in pain, even if I don’t tell you.

– I have to slow down and take frequent rest breaks.

– Naps, or even just sitting and resting, are extremely helpful.

– Your patience, understanding and kindness are appreciated more than you will ever know.

Sincerely,

Your friend with fibromyalgia

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What I Offer to My Students as a Chronically Ill Professor


Faced with the skepticism, the baby talk, the jokes that aren’t funny, the implicit and explicit accusations of laziness and malingering, and the horrified stares and averted eyes as I shuffle by, surgical mask firmly in place, carrying a cane and clutching at the wall in order to keep from falling, I realized I needed to articulate my value to myself. This way, I wouldn’t absorb other people’s beliefs about my low worth. And I hope this essay can help others going through the same thing to understand that they, too, have something important and unique to offer to the world, as well as open the eyes of those who do not (yet) have limitations

One chilly morning in November, I got up feeling…odd. My hat seemed to press down strangely on my head, rendering me peculiarly dizzy, and by the time I set off for campus, little quasi-hallucinations were flashing in my peripheral vision.

Nonetheless, I made it safely to work and taught my first class, and even my second, despite throwing away my packed lunch mid-bite, when the carrot sticks suddenly struck me as unpleasantly warm, and the greasy pools floating on top of my hummus turned my stomach. I even got a surge of energy between my second and third classes, and buoyantly jogged back and forth between the classroom and the office.

But with 20 minutes left in my third class, a powerful wave of dizziness and nausea engulfed me. Somehow I made it to the 50 minute mark, and then raced to the restroom to be sick. Afterwards I made my shaky way home, took some Tylenol, and lay down, hoping to revive myself in time for the guest lecture and dinner the department was hosting that evening.

And I did. But when I stood up after the dinner was over, I had the powerful sensation that I was wearing the ceiling as a hat.
“Never mind,” I told myself as I drove home, alternately giddy and shaking with fever, “It’s just a touch of the flu. I’ll be over it in no time.”

What has followed has been a multi-year, and still ongoing, saga of slow improvement and sudden relapse, accompanied by medical mystification and well-meaning suggestions of snake oil of all stripes. I transformed from someone who did things like go backpacking in the Arctic, to someone who can “hit the wall” like a marathoner at mile 20 just from walking across a room. Carrying a single book from car to classroom can spell a multi-day disaster. (Granted, that book was War and Peace, but still.)

This leads me to ask myself: since I can no longer rush around frenetically like I used to, burning the candle at 16 different ends at once, what do I bring to the table for my students that other, healthier and more energetic professors, do not?

Of course, the other professors may not be much healthier or more energetic than I am: The CDC reports that almost 10 percent of adults have visual difficulties, almost 16 percent are hard of hearing, and over 32 percent “have at least one basic actions difficulty.” Meanwhile, in “Chronic Illness and the Academic Career,” Stephanie A. Goodwin and Susanne Morgan say that “more than half of Americans experience at least one chronic illness,” a situation that can only increase in severity on college campuses as women, who experience disproportionately from chronic illnesses, make up a larger and larger percentage of the professoriate.

And that’s just physical symptoms.

Katie Rose Guest Pryal, who regular writes about mental health and academia, estimates that 25 to 30 percent of academics have invisible psychiatric illnesses such as bipolar disorder. The normal, “healthy” academic may be the exception, not the rule. Which is why it’s not a bad thing to have some glaring examples of imperfect health front and center in campus life.

If you’re already ill, then you may be nodding your head in comprehension. But if you’re anything like I was before I became ill, at this point you have a little voice in your head screaming, “Not me! I watch my health! I live a life of irreproachable virtue. Other people might have these problems, but not me!”

Ah well. It’s a good thing that when I was thinking those thoughts, I nonetheless had examples of other people dealing with many of the same things I am now. Debilitating dizziness, extreme difficulty walking, and soul-sucking fatigue are even less fun than they sound. And that’s why it was an even better thing for me to see that when these other people who had plunged into the abyss of chronic illness before me couldn’t function “normally,” things still got done. It’s easy, especially for driven, disciplined people like me, to fall into the trap of thinking that things have to be “perfect,” that schedules must be kept and plans must be executed exactly as devised. But any plan, no matter how perfect, is just one way of achieving a goal. Being forced to deviate from it doesn’t necessarily mean failure, it just means you may have to be a little more flexible and creative in getting there, even if you have to operate in ways that aren’t quite “normal.”

I, in my vain and thoughtless youth, used to be astounded and even a little horrified whenever I would see sick or disabled people laugh and have fun like a “normal” person, let alone work. But it turns out they were “normal” people, and were living what in many ways were essentially “normal” lives, because everyone, no matter how different they might seem, lives the life that’s normal for them. This is why students (and colleagues need to have those of us who aren’t so healthy around. Not as a grim memento mori, but as a reminder that life goes on.

Because life does go on, even if it’s not how you thought it would go. Experiencing illness and injury brings home the fragility not only of plans, but of your very identity, and with that, the primacy of reality. Which is yet another reason why it’s good for students (and colleagues) to be exposed to disability: it’s another form of diversity, one that is unique. Most people will remain the same race and gender they were born with; many will never leave their nationality, sexuality, or socioeconomic class. But anyone who lives any amount of time at all is going to experience varying levels of physical and mental ability, and the status as a healthy and able person can change in a single heartbeat. When that happens, you discover that the outer trappings of the person you thought you were are gone, perhaps forever, and you may not be able to get them back, no matter how much you and everyone around you wants you to.

This is a hard lesson to learn, and one we instinctively shy away from. However, by being exposed to people with different conditions, sometimes ones that require them to deviate from the standard picture of what teaching looks like, students can learn that learning takes place under all sorts of conditions, especially less than favorable ones. They can prepare themselves for the time when they, too, will be the ones with the wheelchair, the crutches, the hearing aid, or the less visible but no less debilitating condition that can sap your energy and take away the things you thought made you “you.” And perhaps they can then come to understand that just because life as you know it has changed, it still goes on, sometimes with gifts of patience and compassion you would have never gained otherwise. And that may be a lesson that will stay with them far longer than any form of textbook knowledge.

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This Is My Life With Fibromyalgia


Today was supposed to be a social day. I had breakfast plans with a couple of girlfriends and afternoon drinks plans with another. I was looking forward to today.

But rather than a social day, today has ended up being a lounge day. This is fibromyalgia. Fibro feels like pain, tiredness, isolation, sadness, confusion, fogginess, limiting, never-ending.

Two nights ago I went to my usual yoga class. I say usual because I had been in a routine of going to this yoga class but, due to, well, life, I hadn’t been in around four weeks. So naturally I was in for some pain.

I woke an hour or so after going to bed that night. My muscles had already started to stiffen. I was tight. All over. Sore.

I had an awful night’s sleep, waking every hour or so every time I tried to roll over. Each time I woke my body was stiffer, tighter, sorer.

My daughter cried in the middle of the night. Her cot is on my side of the bed. All I needed to do was roll over, hand her a dummy and she would fall back asleep. Moving is the last thing I wanted to do. My body was so heavy. I felt weighed down, as though my body was made of stone. I didn’t want to move. I didn’t want to roll over. Maybe she’d stop on her own. I was so sore. So tired. I had to move.

 

I wake the following morning and start my usual routine of unfolding my fingers from the ball they had become overnight. I notice my legs much more than I did the day before. Cement. It feels like I’ve been encased in cement from my waist down. So heavy. My butt, my legs. So heavy. I don’t want to move, but of course, I have to.

I swing my body into a seated position on the edge of the bed. Rest. I place my feet on the ground; they unfold underneath me. I stand. Rest. I start to walk. Every fiber of my body is tight, stiff, sore.

The following morning, this morning, is worse. I wake and I lie in bed. The weight of my arm on my legs is too much. Too heavy. I have to move it. My chest feels as though I have been coughing all night. It’s as though I can feel every individual rib against my skin. The blankets are too heavy for my legs but it’s cold so I don’t want to take them off. I try to puff the blankets up, making a cocoon around my body. Tucked in at the sides, high in the middle so as not to touch my legs. I notice my shoulder blades. They ache. My lower back. My butt. My body is too heavy, my poor bottom is taking so much of the weight. But I can’t roll over. I don’t want to move.

My legs. As always, my legs are the worst. The cement feeling is back. Except for some reason I always imagine that if my lower half were encased in cement, it wouldn’t be in pain. Heavy, but not in pain. I am definitely in pain. My hips, my legs. They are definitely in the worst kind of pain.

I don’t want to move but I know I have to. If nothing else, I have to take care of my daughter. I have plans for today. Plans I’ve been looking forward to. Why did I make plans? I don’t want to do anything. Maybe if I get up, move around, warm up my muscles, I’ll feel a little better.

An hour before I’m supposed to be leaving for breakfast I’m still not well. Can I manage the half-hour drive? Can I manage the seats in the cafe? I’ve never been there before so I don’t know the set-up. Will there be room for a pram or will I have to carry my daughter in? She’s so heavy now. How close will I be able to park my car? What will the seats be like? Will my back take the seats? Will my legs?

I move to brush my daughter’s hair away from her eyes. My back. I can’t go. I need today off. I need to stay here. I need to rest. I need to get better.

This is fibro. Pain, tiredness, isolation, sadness, confusion, fogginess, limiting, never-ending.

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Thinkstock photo via ddsign_stock.

orange umbrella against a blue sky

The Importance of Finding Joy on Days Filled With Pain


Yesterday morning, I pressed snooze at least half a dozen times, overwhelmed with regret. The muscles in my back and between my ribs were tight and spasming with each movement. My four years post-op hip suddenly felt like an intruder, too big for the space it was occupying. Getting out of bed seemed like an impossibility. All because I had chosen to ignore the bottle of baby pink pills on my bedside table the night before. Muscle relaxers. They give my body a chance to rest, to reenergize, to prepare for each long day ahead.

After close to an hour of mental preparation for what I knew would be a hellish day, I trekked to the kitchen to make some tea and pack my lunch for work. The muscles in my back were already protesting each movement, begging me to lie back down. I grabbed a heating pad, my favorite ice pack and a bottle of 800-mg ibuprofen on my way out the door.

Living with a chronic illness sucks. My days are easily consumed by anxiety over subpar medical care, the mounting expenses for my medications and constant appointments, guilt over the stress it must cause my family, boyfriend and close friends. As if that weren’t enough, from the moment I wake up to the moment I go to sleep, something hurts.

 

Unless I have to, I probably won’t be able to go out with my friends on any given weekend. The simple idea of going somewhere “for fun” exhausts too much of my hard-to-find energy. I definitely won’t be able to attend the music festival everyone’s excited about or go camping this summer when my work friends ask. When I’m in a flare-up, events are a thing of the past, a daydream.

This is where joy comes in.

Joy lives in the cracks, and is disguised as ordinary. It can seem impossible to find on the days when you wake up and can so clearly see the odds stacked against you. But if you keep looking, it’s there. Waiting.

For me… Joy is reaching my hands underneath my pillow when I wake up in the night, invading the last cool space in the bed. Joy is seeing my boyfriend’s smile stretch across his face and his arms open up when I walk in the door after work. Joy is a clean room. Joy is the family of birds who live outside my window, chirping loudly as I type this. What are they saying to one another? Joy is a bite of spaghetti that is way too big for my mouth. Joy is a smile, as I gaze up at the ceiling during Upward-Facing Dog. At least my body can still do this. Joy is my softest blanket, fresh out of the dryer. Joy is the wet spot my cat leaves as her face pushes urgently against my arm. Joy is a surprising conversation with a new friend, or maybe even an old friend.

Joy can be a color, a word, a moment, a memory, a song. It can punctuate a sentence, or it can wash over you like sunlight. Joy is something you take in small doses, as often as you can, to help get you through the toughest moments, the longest days. No prescription required.

Joy is simple, and it is everywhere.

Joy keeps my heart whole, even when my body is not.

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Why I Choose to Push Through My Chronic Pain


Most people would be baffled if I told them that I battle with chronic pain every day. This is not because my pain is any less real than someone else’s. I have accepted that I have fibromyalgia and yes, I do know that I have limitations. But what I also know is that it doesn’t have to take life away from me completely.

I am currently in my final year of high school and I’d be lying if I said that pain hasn’t impacted my life greatly.

But I do choose to push through the pain, and here are just a few reasons why:

1. I am in pain, but pain is not who I am.

I live every minute of every day in pain and it is a much bigger part of my life than I ever would have imagined. But I am not just my pain. I am also a young adult with my whole life ahead of me. I am a daughter, a sister, a niece, a cousin and a friend. I experience many of the same issues and dilemmas (and probably more) as my friends do. I know what it’s like to want to be able to go out and drink. I know what it’s like to have crushes and to spend hours on the phone to a friend discussing boys and clothes and completely stressing out about the smallest of issues. Because regardless of my illness, I am human. Because my life is about more than just pain. It is definitely one part of my life, but it is not my whole life.

2. Maintaining stable mental health is equally as important to me as my physical health.

Physical pain is one thing. Mental pain is another. And together, they can make life hell. Having fibromyalgia means that I will always experience physical pain and I am prepared to have flare-ups as a result of sometimes putting my health second. (Just to be clear, I am in no way putting myself in danger by doing this.) I feel the most alive when I am with my friends. I love to go out to nice restaurants and I love to spend time in bustling shopping centers or explore the city. These are just a few of the things that make me happy and I believe I deserve to be happy so I will continue to keep doing them. I believe that just because my physical pain isn’t going away any time soon, that doesn’t mean I have to have mental anguish, too.

3. I don’t want my pain to take more away from me.

Five years ago, when I got my first nerve palsy and my Ehlers-Danlos syndrome was diagnosed and I began to understand what pain really meant, I lost a lot. I used to be the best swimmer in my school, I was a dancer, I was top of my class academically. Since then I have had to stop the sports I love to do. I also have lost the ability to write so I have to have a scribe and I struggle immensely to be able to concentrate and retain information like I used to be able to do. But I won’t let my pain take me away from my friends and family. I will go out for dinner, I will go get coffee, I will go shopping, I will go to school, because I will not let my whole life be taken over by pain that is out of my control.

4. I don’t want to be treated differently.

There have been countless times when I have spoken about my pain to someone close to me, and all of a sudden I go from a friend or relative to someone who is ill. I am in no way ashamed of having fibromyalgia and I want nothing more than to be able to open up and educate those around me, but what I don’t like is being treated like I am less than someone else because of it. So to the majority of people, I want to appear “normal.” All the people who I need to support me know the truth about what I am like behind closed doors, but to everyone else, I choose to keep my illness hidden so that no one looks at me like I’m different again. I don’t want people to feel sorry for me, I don’t want their pity. Honestly, that’s the last thing I need.

5. It gives me a sense of control.

I am a control freak. I like to have everything in order and organized so I feel like I can be in control. As my fibromyalgia has gotten more severe, I have found the inability to control flare-ups one of the hardest things to deal with. But when I push through pain, I feel a sense of control, rather than feeling as though the pain controls me.

6. Chronic pain means it is lifelong, so I can’t wait for it to get better.

The word “chronic” changed a lot about the way I treated my pain. Not that it is less important or easier in any way, in fact I’d say it is a hell of a lot more difficult than acute pain, but because it isn’t going away any time soon. For me, this meant I wasn’t going to wait for the pain to get better, because it won’t. Instead, I decided that I would enjoy my life as much as I can while I can.

I’m not saying that doing this is easy. It’s far from it. Every day this technique of coping with pain becomes increasingly more difficult, but while I still can, I will continue to live life to the best I can despite pain. This way I know that if pain eventually begins to take over, I can confidently say that I have lived life to the best that I know how.

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Thinkstock photo by Grandfailure

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