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What Bothers Us The Most About AS?

Lately, I’ve been experiencing an SI joint flare-up. I’ve had the fatigue, the difficulty moving around, the all-over pain, and just about everything else. I started to wonder what other people go through when they have a flare-up. I took to Instagram to ask what bothers others the most about AS, or chronic illnesses in general.

The fatigue

Ever since I started experiencing symptoms, I’ve always found that the fatigue is the worst symptom of all. I got a lot of answers back from people saying the exact same thing. Not only is AS physically draining, but it’s mentally draining too.

I find even when I’m not in a flare that the fatigue still plagues me. Doing too much of anything some days will leave me exhausted and wanting to do nothing but lie in bed. Sometimes something as simple as watering the garden, or cleaning the bathroom can take my entire day’s worth of energy away.

Being so tired all the time can make you feel depressed and generally low. It’s upsetting that a simple task that anyone else can do and move on with their day debilitates us and has us going for a nap or to watch TV again. Sometimes I just want to function like a normal person and be able to do what I need to do every day.

The pain

The all-day, everyday pain is an obvious one. Who wants to be in pain literally 24/7, with little to no relief? No one. No one wants that.

Chest pain

With AS, we experience SI joint (hip) pain, lower back pain, chest pain, amongst other things. I experienced costochondritis for the first time a few months back. Costochondritis is when the rib cage or sternum becomes inflamed. I didn’t know what was going on, it felt like someone was stepping on my chest. It had the pressure of anxiety, but with added pain with every movement.

I talked to a few people from the AS community and found out that quite a lot of people have had costochondritis lead to their diagnosis of AS. Something I had no idea about, but learned about and experienced 2 and a half years into my AS journey.

Hip pain

Hip pain is another type of pain we deal with. Sometimes it attacks my outer hip, sometimes my pelvis, sometimes both. It makes it very difficult to walk and even bend down to pick something up. When it’s really bad, I use my cane. It gets very frustrating very quickly with the lack of mobility I sometimes have. I hate asking for help, but sometimes it’s impossible to do something like get up to warm up my hot pack, and that’s when I have to ask for help. No one wants to have to depend on someone else for basic tasks, but that’s something that those of us with AS have to deal with regularly.

Other symptoms

The pain and fatigue were the most mentioned when I asked which symptoms were the worst. I would have to agree, but I’m curious if there are any others that I haven’t mentioned that affect your day to day life. Feel free to leave a comment and start a discussion about which symptoms bother you the most!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lisa Marie Basile moderator
    2 weeks ago

    Thanks for this! In the beginning, the pain was my worse than the fatigue. For some reason, I’ve gotten weirdly “friendly” with my pain. It’s like my twin, always following me around. I can predict it. But the fatigue is so ever-lasting, so hard to ignore or work around, that I think that’s the worst.

    I wonder often how our lives have changed because of our experiences. I also wonder if we’d be as empethetic/compassionate if we didn’t experience this?

  • Steff Di Pardo moderator author
    2 days ago

    I totally agree Lisa! I’m sadly friends with my pain now. The fatigue is just so ruthless.

    I wonder that too, that’s a great point! I would like to think we would still be as empathetic… but at the same time… you don’t truly get it until you get it.

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