19 'Scary' Parts of Fibromyalgia We Don't Talk About

When most people hear the word “fibromyalgia,” they might immediately associate it with some of the physical symptoms, like chronic pain, fatigue or brain fog. But as those with fibro know, the condition is complex, and can affect your life in so many different ways.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

One of the many side effects fibro can cause is fear. Living with a chronic, unpredictable condition that causes a wide range of symptoms which are tough to manage can naturally affect your mental and emotional health. Many may understandably feel scared and anxious about their health and their future with fibromyalgia.

To help others better understand why those with fibro might struggle with feelings of fear, we asked our Mighty community to share a “scary” aspect of fibromyalgia they experience, and how they cope with it. If the following sound familiar to you, know you’re not alone.

Here’s what our community shared with us:

1. “The anxiety of planning ahead for events, trips, outings, meetings, anything because of the unpredictability. I deal with it by carefully putting one foot in front of the other, one day at a time, sometimes one hour at a time, still planning to do the things that make me happy.” – Sarah N.
2. “I look at how downhill I’ve gone in two years and I’m terrified at how bad I’ll be in two more. Scared about the future, I know I’ll have to stop working or reduce hours if I keep getting worse but have a mortgage to pay and it’s scary to think about how we’ll manage when the time comes. I’m torn between working my a** off now to pay it off early but potentially making myself worse… or risking being able to work longer.” – Lesley B.
3. “Never knowing if the pain you feel is actually your fibro or something else. I write a lot of my pain off as fibro and then think, what if I’m wrong? Any symptoms that are new, I report to my doctor, just in case. But I always worry.” – Amanda G.
4. “Losing my ability to function on my own. The idea that I used to be a capable independent person who did everything on my own. Sometimes I cannot even shower without help from my husband. I also have problems with things like counting money or change. I am terrified of how much worse it could get… how much of myself am I going to continue to lose. How much more of my independence will I lose. I am so scared of completely losing myself in this disease.” – Char B.
5. “My biggest fear is for my future. I can’t take care of myself. I’m poor. This administration intends to cut my already inadequate benefits. I have no children to care for me. I truly don’t know what I’m going to do in the future when my current situation ends.” – Pamela M.
6. “I think the scariest part is the brain fog. There are moments when I can’t remember if I told a friend something important or not. There are moments I can’t remember if I took my meds or not. There are moments when I can’t remember if I ate, if I did an errand, what I did last week, etc. I try to keep a day planner, but sometimes that doesn’t help. The worst is when I go somewhere – not just to the kitchen, but to, say, the grocery store – and completely forget what I went there to get.” – Stacy S.
7. “Feeling my symptoms getting worse as the years go by. This year I had to resort to using a walker and a scooter to keep up with my family on vacation. I didn’t feel embarrassed. I felt scared for the future.” – Norma S.
8. “Trying to keep going even when you’re exhausted to the point of collapse and in agony because you still need to live and work and make a living. Don’t be afraid to ask for help from friends and family and even financial help. Just that little bit of help takes some of the pressure off (mentally of course, the physical pressure is always there!).” – Christie L.
9. “It scares me when I can’t remember what happened this morning… did I eat yet today? I try and visualize my day so far but I can’t recall anything. Not knowing ordinary words. Not knowing the name of household objects and asking what day it is about six times a day!” – Georgina B.S.
10. “The poverty that comes with the inability to work. I was never afraid before.” – Jennifer B.
11. “Brain fog for sure. When in a bad episode, I’ve briefly forgotten how to do things I learned as a child, like telling time or counting money… which is very scary considering I’m an elementary school teacher and have to teach these concepts to little ones! Things like that don’t last long, but when they do happen, I just ask whoever I’m with, whether it’s students, friends or even strangers, to please be patient with me for a few moments. Then I take a deep breath and remember my brain is just a little sleepy! It’s not a hard and fast strategy per se, but I find being honest with people and asking them to be patient works really well because they’re usually supportive.” – Shelby C.
12. “Doctors not caring, and not taking us seriously. The thoughts that the bone-deep pain is never going to go away. That your spouse will leave you because it’s all ‘too much,’ especially the financial strain. That people think you’re faking it for attention. Medical professionals not believing your pain level, because to them, you should be crying and screaming at that level.” – Heather N.
13. “The effect it has on family and intimacy that is lost.” – Lisa H.M.
14. “The scariest aspect is thinking I’m doing pretty well on errands but then suddenly not remembering which street I live on. I hadn’t realized how bad the fibro fog was that day. After that, I made sure home is programmed into my phone and GPS, just in case.” – Dawn D.
15. “Never being able to plan or commit myself to anything. Not knowing when will be the next trigger to a flare-up and how long before I come out of it.” – Lisa M.G.
16. “All of it! Searching and trying out coping strategies just to get through a flare-up. Having to deal with the constant internal battle of living with a chronic condition that doesn’t let up. It’s scary not being able to get away from it… I cope by telling myself, ‘I’ll get through a flare-up and get to see tomorrow. It can always be worse but today you’re alive.’” – Louise P.
17. “The scariest thing for me is that in a year, I’ve gone from someone who could care for herself and her kids, to having to have the kids help care for me. Days of not even being able to get up and shower. What will the next year bring?” – Leighann J.
18. “The scariest part is the unpredictability of the appearance and severity of symptoms. I find it very hard to plan ahead for fear that my symptoms will overshadow the day and ruin it for my husband and son.” – Virginia R.K.
19. “The uncertainty of the future and not knowing day to day how you will feel… Not knowing how your pain will present itself or affect you each day!” – Emma T.

If you struggle with fear and anxiety because of fibromyalgia, you’re not alone. Below are stories from our community on coping with several of the most common sources of fear fibro warriors face.

14 Products People With Brain Fog Swear By

3 Ways I Cope With Anxiety Due to the Unpredictability of My Illness

Why We Need to Talk About the Fear That Comes With Chronic Illness

My Fears as Someone With a Progressive Illness

17 Apps That Can Make Life Easier When Brain Fog Takes Over

The Scariest Part of Having Fibromyalgia