19 “fearsome” parts of fibromyalgia that we do not talk about

When most people hear the word “fibromyalgia,” they can immediately associate it with certain physical symptoms, such as chronic pain, fatigue, or brain fog. But as people with fibro know, the disease is complex and can affect your life in different ways.

One of the many side effects that fibro can cause is fear. Living with an unpredictable chronic illness that causes a variety of unmanageable symptoms can naturally affect your mental and emotional health. Many can naturally be scared and worry about their health and their future with fibromyalgia.

To help others better understand why people with fibro may experience feelings of fear, we asked our Mighty community to share a “scary” aspect of the fibromyalgia they experience and to know how to deal with it. If the following sounds familiar, keep in mind that you are not alone.

This is what our community shared with us:

  1. “The anxiety of planning for the future for events, trips, departures, meetings, all because of unpredictability. I solve the problem by carefully placing one foot in front of the other, one day at a time, sometimes one hour at a time, while planning to do what makes me happy. – Sarah N.
  2. “I see how much I’ve been down for two years and I’m terrified to see how bad I’ll be in another two years.” Afraid of the future, I know I will have to stop working or reduce the amount of work hours if I continue to get worse, but I have a mortgage to pay and it is frightening to think about how we will manage when the time comes. I am divided between working now to pay early, but potentially getting worse … or risking work longer. – Lesley B.
  3. “I will never know if the pain you’re feeling is actually your fibro or something else. I write a lot of pain in the form of fiber and then I think: if I’m wrong? Any new symptoms, I inform my doctor, just in case. But I’m still worried. Amanda G.
  4. “Losing my ability to function alone. The idea that I was an independent person capable of doing everything on my own. Sometimes I can not even shower without the help of my husband. I also have problems with things like counting money or money. I’m terrified to see how much worse it could be … how many of me I’ll keep losing. How much more of my independence will I lose. I am so afraid of losing myself completely in this disease. – Char B.
  5. “My biggest fear is for my future. I can not take care of myself I’m poor. This administration intends to reduce my already inadequate benefits. I do not have children to take care of me. I really do not know what I will do in the future when my current situation ends. – Pamela M.
  6. “I think the most terrifying part is brain fog. There are times when I do not remember if I said something to a friend or not. There are times I do not remember if I took my medication or not. There are times when I can not remember if I ate, if I did a race, what I did last week, and so on. I try to keep an agenda, but sometimes it does not help. The worst part is when I go somewhere, not only in the kitchen, but in the grocery store, for example, and I completely forget what I did there. – Stacy S.
  7. “Feeling that my symptoms get worse over the years. This year, I had to use a walker and a scooter to keep up with my family on vacation. I did not feel ashamed. I was afraid for the future. – Rules.
  8. “Try to continue even when you are exhausted to the point of collapsing and suffering pain because you still need to live and work to live. Do not be afraid to ask for help from friends and family, or even financial help. This little impulse relieves the pressure a little (mentally, physical pressure is always present!). – Christie L.
  9. “It scares me when I can not remember what happened this morning … have I eaten today? I try to visualize my day until now but I do not remember anything. Not knowing ordinary words. Do not know the name of the objects in the house and ask what day we are about six times a day! – Georgina BS
  10. “The poverty that comes with the inability to work. I had never been afraid before. – Jennifer B.
  11. “Brain fog insurance. When I’m in a bad episode, I briefly forgot how to do the things I learned in my childhood, such as telling time or counting money … which is very scary, since I am a teacher of elementary school and I have to teach these concepts to little children! Things like that do not last long, but when they happen, I just ask whoever it is, whether students, friends or even strangers, wait a few moments with me. Then I take a deep breath and remember that my brain is only sleepy. It is not a hard and fast strategy in itself, but I think that being honest with people and asking them to be patient works really well because they are generally supportive. – Shelby C.
  12. “The doctors do not care about us and do not take us seriously. Thoughts that deep pain will never go away. That your spouse leaves you because it is “too much”, especially the financial burden. Let people think you’re trying to get attention. Health professionals do not believe in your level of pain because for them you must cry and scream at this level. – Heather N.
  13. “The effect this has on the family and the lost privacy”. – Lisa HM
  14. “The scariest thing is to think that I’m doing well enough to buy, but suddenly I do not remember the street I live on.” I did not realize how bad the fibro fog was that day. After that, I made sure the house was programmed into my phone and my GPS, just in case. – Dawn D.
  15. “You can never plan or get involved in anything. Not knowing when the next trigger of an outbreak will be and how long it will take before I leave. – Lisa MG
  16. ” All that! Search and try coping strategies only to overcome a crisis. Having to deal with the constant internal battle of living with a chronic disease that does not give up. It’s scary    not being    able to escape … I manage to say: “I’m going to have an outbreak and I’ll go see tomorrow.” It can always be worse, but today you are alive. ‘”- Louise P.
  17. “What scares me most is that in a year I was someone who could take care of herself and her children to ask their children to take care of me Days without being able to even get up and shower. What will bring next year? “- Leighann J.
  18. “The most frightening part is the unpredictability of the appearance and the severity of the symptoms. It is very difficult for me to plan ahead because I fear that my symptoms will darken my day and spoil it for my husband and son. – Virginia RK
  19. “The uncertainty of the future and the fact of not knowing day by day how you are going to feel … You do not know how the pain will affect you or how it affects you every day!” – Emma T.

If you suffer from fear and anxiety due to fibromyalgia, you are not alone. Below are stories from our community on how to handle many of the most common sources of fear of fibro warriors.


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