I get that it’s good for us to move, no matter how, the length of time, or distance. I love to walk, and in my pre-fibromyalgia life, I walked for miles with no problems. Now, not so much. I did recently buy myself a Fitbit so that I would be more intentional about moving by keeping track of my steps. I live for the fireworks that go off when I make my quota! I know healthy people who walk 10,000 steps daily — my current goal is 950. And even with that small target, I get post-exertional malaise.
Webster’s Dictionary defines malaise as:
Wondering what post-exertional malaise is? Basically, it’s when you do more than your body is capable of, and you end up with an energy deficit. That could mean overdoing things physically, but also socially or mentally. I notice it if I’ve walked too far or if I’m writing or working on a project. It’s chronic fatigue on steroids. I am pretty useless for the rest of the day. Have you experienced this?
I find that when I overdo it — and it doesn’t take much — I have increased pain and decreased energy for days afterward. It’s so frustrating trying to stay healthy when our bodies continue to fight against us.
I don’t know how many of you suffer from incredible exhaustion after a bath or shower, but it’s so debilitating for me. That kind of complete exhaustion is what I experience after walking for about 10 minutes. I can’t believe I used to be able to walk a mile to work in high heels and not even be tired when I got there. That seems like a lifetime ago. We need to learn and maybe relearn to pace ourselves. I’m not saying that we shouldn’t push the boundaries a bit, but rather we need to be aware of our limits and respect them.
If you have chronic fatigue syndrome along with your fibro, this is a more complex issue. I think that because we are ill, we tend to be more fully aware of our limitations; when we are healthy, we can push the boundaries with little consequences in relation to loss of energy. What are your thoughts?
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Hello Robin! Thank you for posting this. I identify with all you are saying. I had to stop wearing my fitness tracker though, as it was putting undo pressure on me and I definitely pushed my physical, fibro limits to reach ridiculous step goals! I’ve learned to base my activity on how I feel each day instead of counting numbers. This approach works for me and I find that my recumbent bike is the most comfortable and safe way to move my body, ease discomfort and yet still improve my cardiovascular health. Good luck on your pursuits and although I know how difficult it is to not compare yourself to your past self, embrace who you are today for you sound like a strong, determined person who acknowledges her limits. That’s all we can do!
Thank you Lisa!! We all need to do what works for us 😊 I have a recumbent bike at my brother’s house. We downsized and now it won’t fit in our smaller space, but I miss it
Lisa,
Thank you for sharing this information it is helpful to know others feel the same way.
I just wish we could get our family and friends to realize this. I had worked up to almost 3 miles until one day I got about 10 minutes into it and could not take another step – that was a year ago and I haven’t come out of that flare yet. I am trying to just get out everyday but feel like such a looser because everyone expects me to do the whole walk. It’s been this way for almost 40 years – some remissions last a year or more but it seems it hits harder every time it comes back. All this to say I understand where you are. If you don’t have it you just can’t understand it.
It sounds like we’re living the same life!
Thank God there are more like me; I’m not loony !! Every morning I think I’ll never be able to get out of bed ever again or have fun or even an OK time. Please don’t take away my pain meds……….
I totally empathize!! 💜
Robin,
I so relate to your statement, “I know how difficult it is to not compare yourself to your past self, embrace who you are today for you sound like a strong, determined person who acknowledges her limits”. In the past I have joined several gyms and the competition was high. I tried to keep up with other members and ended up hurting myself. Ended up at the doctors and rehab for 6 months. My doctor suggested to learn to except the Fibromyalgia and go at my own personal pace. So yes we have to embrace who we are today.
I can relate to all the above comments. That awful feeling of being constantly fatigued, generally unwell and bouts of depression. I hate not spending quality time with my young grandchildren. Fortunately my husband family and friends are very understanding. My husband is visually impaired, so we need to support each other. I try to get through each day as best I can, rest when I need to and be as active as I can be when I feel like it. It seems to be getting worse, the older I get. I truly empathise with you all.
Hi Margaret! I’m glad you and your husband are there for each other. I feel like my fibro gets worse as I get older as well, not sure if it’s the fibro or just getting older