19 ‘scary’ parts of fibromyalgia that we do not speak

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

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

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

See what our community has shared with us:

  1. ” The anxiety of planning in advance events, travel, outings, meetings, anything because of unpredictability. I deal with this by carefully placing one foot in front of the other, one day at a time, sometimes an hour at a time, still planning to do the things that make me happy. “- Sarah N.
  2. ” I see how I’ve been down in two years and I’m terrified of how bad I’ll be in two more. Frightened by the future, I know I’m going to 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 deal when the time comes. I’m torn between working right now to pay it off early, but potentially worsening … or risking being able to work for longer. “- Lesley B.
  3. ” Never know if the pain you feel is actually your fibro or something else. I write a lot of my pain as fibro and then I 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 alone. The idea that I used to be an independent person who could do everything by myself. Sometimes I can not even take a shower without my husband’s help. I also have problems with things like counting money or changing. I’m afraid of how much worse it could be … how much of me I’m going to continue to lose. The more of my independence I will lose. I’m so afraid of losing myself completely in this disease. “- Char B.
  5. ” My greatest fear is for my future. I can not take care of myself. I’m poor. This government intends to cut my already inadequate benefits. I do not have children to take care of me. I really do not know what I’m going to do in the future when my current situation ends. “- Pamela M.
  6. ” I think the most frightening part is the fog of the brain. There are times when I can not remember whether I told a friend something important or not. There are times when I can not remember whether I took my medicine or not. There are times when I do not remember if I ate, if I did a mission, what I did last week, etc. I try to keep a daily planner, but sometimes that does not help. The worst is when I go somewhere – not just to the kitchen, but to, say, the grocery store – and I completely forget what I went to do there. “- Stacy S.
  7. ” Feeling my symptoms getting worse over the years. This year I had to resort to using a walker and a scooter to accompany my family on vacation. I did not feel ashamed. I felt scared of the future. “- Standards.
  8. ” Trying to continue, even when you’re exhausted to the point of collapse and agony, because you still need to live, work, and earn a living. Do not be afraid to ask for help from friends and family and even financial help. Only this little bit of help takes away some of the pressure (mentally, of course, physical pressure is always present!). “- Christie L.
  9. ” It scares me when I do not remember what happened this morning I still … until today? I try to visualize my day so far, but I can not remember anything. Not Knowing common words. Not Knowing the name of household objects and asking what day is about six times a day! “- Georgina BS
  10. ” The poverty that comes with the inability to work . ” – Jennifer B.
  11. ” Mist of the brain for sure. When in a bad episode, I briefly forgot how to do things I learned as a child, how to count the time or count the money … which is very scary considering I’m a primary school teacher and I have to teach these concepts to the little ones! Things like this do not last long, but when they do, I just ask whoever I am, whether students, friends or even strangers, so please be patient with me for a moment. So I take a deep breath and remember that my brain is a bit sleepy! It’s not a hard and fast strategy per se, but I think being honest with people and asking them to be patient works great because they usually give support. “- Shelby C.
  12. ” Doctors do not care and do not take us seriously. The thoughts que the deep pain of bones will never disappear. That your spouse will leave you because everything is” too much “Especially the financial strain. That people think you’re pretending For medical attention do not believe in your level of pain, because you should be crying and screaming at that level. “- Heather N.
  13. “The effect this has on family and intimacy is lost.” – Lisa HM
  14. ” The scariest aspect is to think I’m doing very well on errands, but suddenly I do not remember Which street I live on. I had not Realized how bad the fibro fog was que day. After que, I made sure my home was programmed on my phone and GPS, just in case. “- Dawn D.
  15. ” Never be able to plan or commit to anything. Not knowing when the next trigger will be for an outbreak and how long before it comes out. “- Lisa MG
  16. ” All this! Researching and attempting coping strategies just to go through an outbreak. Having to deal with the constant inner battle of living with a chronic condition that does not give up. It’s scary  not  being able to get away from it … I struggle myself by saying to myself, ‘I’ll get over an outbreak and see tomorrow. It can always be worse, but today you are alive. ‘”- Louise P.
  17. ” The scariest thing for me is that in a year I went from someone who could take care of themselves and their children, of having to help the children take care of me. Days of not being able to get up and take a shower. What will the next year bring? “- Leighann J.
  18. ” The most frightening part is the unpredictability of the appearance and severity of the symptoms. I find it very difficult to plan in advance for fear that my symptoms will dim the day and ruin it for my husband and son. “- Virginia RK
  19. ” The uncertainty of the future and not knowing the day to day how you will feel … Not knowing how your pain will present itself or affect you every day!” – Emma T.

If you struggle with fear and anxiety because of fibromyalgia, you are not alone. Below are stories from our community about how to deal with several of the most common sources of fear that fibro warriors face.

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