Living with Fibromyalgia: The Unpredictability of Symptoms

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I can completely relate to the variety and severity of symptoms day to day. When the triggers for what makes us feel worse seem to be so random at times. And being afraid to make plans for the next day or even the afternoon because you don’t know how you will feel in a few hours or the next day. It’s exhausting to be guessing and feeling held prisoner by fibro. It is so easy to doubt ourselves and the severity of our symptoms when we feel one way today for nothing different and feel terrible the next day and keep flip flopping back and forth. Your pain and other symptoms are real and valid. Your guilt is completely understandable, but you did not choose to have fibro and feel this way. And you are you doing your best to do all the things while feeling terrible and trying to feel better at the same time. That is a lot all at once. It is okay and healthy to grieve the things you have lost and the changes in your life. I agree with the suggestion above for coaching. Docs don’t know about fibro and some don’t even believe in fibro because it doesn’t show up on a lab test or get much if any attention in med school. But it is very real and there is A LOT that can be done to feel better. There are health coaches who specialize in fibromyalgia who can help and lots of great resources as well. I am happy to share some of them with you if you would like. In 3 years I went from almost completely bedridden barely able to walk the 10 steps to the bathroom or complete a logical sentence and a lot of other symptoms with pain 8/10 on a good day. And now 3 years later I am 90% functional compared to before I got sick. And still improving. I even finished grad school even with my fibro fog. It is really hard and at first feels impossible to learn to love our fibro bodies. But I have come to appreciate my fibro because it forces me to use my time and energy wisely. I stopped saying yes to things that didn’t bring me joy. I started putting myself and my health physical and mental first instead of last. And so much more. I listen to my body instead of pushing myself to burn out. And I am so much more aware of my body my mind my time and my energy now. And I appreciate the little things my body can do now that I didn’t appreciate before like being able to take my puppy for a walk or walk a flight of stairs. I’ve been where you are and I’m happy to listen and talk about how you are feeling now. And I hope my story brings you some hope that things can get better and life will not look like you thought but your dreams are still possible. If you want to talk about how I got where I’m at now dm me anytime.

Thanks to everyone ❤️ it feels really humanizing to read everything you’ve said. Also, I’m open to talking if anyone wants to get to know each other more or vent about life.

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It’s so overwhelming at times, and I totally relate to the guilt surrounding your partner and family. I was diagnosed with fibro only 7 months after I got married. It’s so hard to feel like I’m not gaslighting myself, and it’s confusing to have different levels of pain and functionality on different days. I totally get the feeling of not knowing what your dreams and goals are. I feel like chronic illness has taken everything from me. Something that helps me is the spoon theory, and reminding myself that I’m going to have different levels of days, but that doesn’t make my pain any less real. I hope you’re able to find some positivity and support, and I’m here if you want to chat :)

Oh man, everything you said makes sense to me! I feel very similarly about my fluctuating conditions—on my worst days I’m so guilty for not being able to do things, and on my better days I’m still carrying that guilt. It is valid to have these conflicting thoughts and feelings, especially in a world that doesn’t highlight the experience of chronic pain. We are not taught how to manage and live a life that is outside of the “norm”, even though most people do not even fit that. I’m in the same position you are now, where my conditions have kind of put me at a place where I can’t do what I thought I could. And it feels like you’re just in limbo, waiting until the severity breaks, so you can maybe get back to what you want to do. But it’s hard, because a lot of things have to be different or take longer, so how do you plan for that? It’s definitely fed into my depression and anxiety, to live with an ever-changing body that doesn’t seem to want to get along with my goals. My first step is to seek reassurance and find the things I am good at, so I can look for ways to keep those at the forefront of my mind. And then, seeking out coaching has been my next step to organize and reach my goals. These are very active solutions to a problem that is much deeper, though, and sometimes you just need to take the time to feel what you’re feeling. To grieve some losses so that you can make room for something new. I hope that you find some respite from these heavy feelings and thoughts. You deserve to feel in control of your life, and supported. Your perspective holds so much value, and you will create the path that you need to. The creativity of a neurodivergent mind is such a huge strength when you’re faced with ever-changing health. But it’s still tough to keep up with, and it’s okay to need a break from pushing so hard. You’re allowed and encouraged to just exist.

Upon rereading the op I just wamt to add that I also understand the pain of not being able to work on your career and shit cause I had my son 6 years ago and have been at the same job the whole time with no advancement in sight, I can't even take care of my basic needs how am I supposed to even think about finishing school 😥

Thank you for putting this into words, I've been trying to for days but I can never seem to pull the right words together and I give up. I had a really bad week last week and yesterday I spent most of the day in bed, not really because I couldn't get out of it but because my family kept getting too loud and touching me and I didn't want to snap at them because they're just being kids ya know? But my house is in shambles, we just put the kitchen back in order from battling ants and dishes and laundry are so piled up I can't even begin to think about doing them. I wish better days for you and everybody else who relates to us.

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Hi! I don’t think you rambled…I thought you described what you’re going through very well. You pretty much described my daily experience with Fibro and migraines. After working 2 jobs most of my life, 21 years ago the Fibro got so bad I was approved for Social Security Disability by a compassionate Judge. I was on Disability for 20 years, until I turned 65 on my last birthday - now I’m on straight SS. It is a long, unending journey that for me has just gotten gradually worse over the years. Plus now I have a lot of other medical issues to deal with. It’s hard to stay positive and look forward to the future when you’re in pain all the time. I plan to try to get back to doing things like Tai Chi to help with moving meditation. Trying to find small things every day to make me happy. But there is always the guilt that I’m not pulling my weight at home and can no longer be intimate with my husband. My joy is my little constant companion, Zoey, a mini long-hair Dachshund. I love animals and they give me so much joy. I enjoy watching reels on Facebook and Instagram of my favorite animals. Just the simple things. I hope you feel better and find a way to bring some joy into your life. Life is so short and goes by so fast. Be well and live your best life possible. ❤️