‘Scary’ Parts of Fibromyalgia We Don’t Talk About

Fibromyalgia is frequently misinterpreted as a pain disorder, but it actually comprises a broad range of symptoms that can have a significant impact on everyday living. Beyond chronic pain, many people experience fatigue, sleep disturbances, and cognitive issues like brain fog, which can make concentration difficult. The emotional toll can be significantly scary too, with anxiety and depression commonly accompanying the physical symptoms.

Living with fibromyalgia can have an impact on relationships, work, and even self-identity, as it can be challenging to navigate a world that may not fully understand the condition. Managing it often requires a holistic approach, incorporating not just medication but also lifestyle changes, therapy, and support systems. It’s a complex journey that varies for each individual. How have you been experiencing it?

We asked our fibromyalgia community to share their scary aspect of fibromyalgia they experience, and how they mange it. Let us know if this resonate to you and feel that you are not alone in this fight. Most of the people relate brain fog, costochondritis, unpredictability and unsupportive friends and family members to be their scary part of fibromyalgia.

Fear and anxiety are common companions for those living with fibromyalgia. The unpredictability of symptoms can create a constant sense of uncertainty, leading to worries about the future, the ability to manage daily tasks, and concerns about relationships and work. This emotional strain can be just as challenging as the physical symptoms.

People often grapple with feelings of isolation and frustration, especially when others may not fully understand their condition. It’s crucial to acknowledge these feelings and seek support, whether through therapy, support groups, or online communities. Building coping strategies, such as mindfulness, exercise, or creative outlets, can also help manage anxiety and improve overall well-being.

Here’s what our community shared with us:

1. Not being able to say what you are trying to say and the pain keeps getting worse the older you get. I’m 69 and my friends say you aren’t that old, they don’t understand that I feel 100 year old and some days worse. -Rebecca K.
2. The scariest aspect for me was as a whole how was I going to live a somewhat normal life if one at all long side my fibro, after 12 years I had to learn to live a new me and just manage my life different but in the beginning that seemed an impossible hell … and most annoying thing is no one who does not have it or something similar will ever truly understand it or psychological effects not just physical toll it takes on u .. You’d be forever explaining I just don’t now and understand no one will get fibro and the many symptoms and how that effects u .. my fibro pages and its many followers helped me through that feeling alone period and just learned that I have to live a life bit different from other people managing and limiting my tasks and jobs, prioritizing were a must as we have limits we can’t push too much from week to week day to day but it was a process to get there a grieving the old u to a new u managing sleep is a Biggy if u can good sleep routine works wonders but is hard as can become revolving door of pain no great sleep then your energy is low every day. – Destiny D.
3. The pain can be really scary but the thing that scares me the most about Fibromyalgia is the brain fog. I can see changes in the way I think and they are happening fast. I haven’t found a way to cope with this yet as it has hit me hard and quickly. – Angela W.
4. Knowing that if I didn’t have work to go to, I would give up. Having that responsibility keeps me focused and no choice in the matter. I think I’d feel a lot worse if I didn’t have a job to do. Jacob S.
5. Not being able to compute some feelings in my body, the over simulation of my sensory paths.360 on my taste buds.. I could only eat fruit/ sweet and sour things for months. I’ve never been a fruit person, always a veg person. My skin not feeling my own. The overwhelming tiredness. Hypersensitivity to noises and bright lights. And the biggest one…. people/ friends/family not understanding or wanting to understand. – Michele O.
6. The unpredictability of it. It concerns me when I go out if I can manage to get back to my house from a walk or manage to complete the shopping, etc. – Anita M.
7. Feeling like you have the flu every morning and body is burning hot! Not being able to walk far because of pain… the thought of having to go to work knowing your going to be in pain all day heart palpitations, dizziness, breathlessness, shivers no taste the list goes on… Menna L.
8. Having to ask anyone for help. I’d rather struggle on my own in horrific pain than burden anyone else. I just try to keep it all in and keep going with a fake smile like everything is just dandy. I’ve had fibro for about 20 years and for some reason the last two years it has gotten a lot worse. – Vickie F.
9. I usually rub around my sides, under my breasts and it seams to ease the pain, there is a muscle that goes around you and it tightens, try just moving your arms around also. It depends on how severe they are. Just a few suggestions. – Sharon D.
10. It might sound silly, but needing mobility aids is scary for me. I used to be fit as a fiddle, doing karate, biking everywhere, climbing trees. Typical kid. Then I got ill, had surgeries and boom fibro came along for the ride. It took me years to accept that I Needed something more than a stick. I still don’t like to accept it. – Janet W.
11. I have pretty much given up driving out of town because I never know how I will feel. My husband drives, I ride with a friend, and I drive later in the day only if I feel I am having a good day. – Ashley P.
12. The one thing that gets to me the most is being un reliable, it’s hard to plan anything in life because I don’t know what pain level I’ll be that day. I handle it it by going with the flow because I can’t do anything about it. – Sharon O
13. It’s the severe pain mystery where it shows up somewhere and stays for a short time or year+. Those pains defy diagnosis but are very real. When they leave, and it can be immediate, there is no trace of them or why the pain stopped. – Amy L.
14. At first it was terrifying, but now I actually know my body. I am in pain 100% of the time. The range of pain changes, but it’s always there. I know that if I do something one day, I will be in a bad pain flare the next day. So I don’t plan to do things 2 days in a row. And when the exhaustion hits, I just stay in bed and let my body heal. – Ericka W.
15. My memory loss and brain fog. I feel like I’m losing memories and will never get them back. – Amzy L.
16. Brain fog. It’s so scary. I panic if someone asks me a question I’m not expecting. I forget what I’m saying. I forget people’s names. Apart from the pain and unpredictability brain fog is the pits!. – Hilary F.
17. Magnesium malate daily helps with muscle pain, improve sleep, reduce joint pain, lowers stress and boost mood. Hope this helps someone. You got to make yourself think positive our words have power so be kind to yourself. – Lorrie H
18. The fibromyalgia fog particularly at work, I feel like a complete numpty when I used to be so competent. Also not knowing if you will be able to make something you have arranged, hate letting people down. – Sue T.
19. All of the above, but scary has to be costochondritis (sp.) Those muscle spasms in the rib cage are so painful it’s debilitating. – Susan L
20. Costochondritis I call this my scary pain because I feel I’m taking a heart attack, I just need to stop what I’m doing and shallow breath put heat on my chest, until it eases off . – Donna D.

Also Read:

• When Little Things Become Big Struggles Because of Chronic Pain
• 7 Drug-Free Solutions of fibromyalgia
• Developing a Daily Routine For Fibromyalgia Relief

Finding a community or a trusted friend who understands can make a significant difference. How do you feel about addressing the emotional aspects of living with fibromyalgia?