When Fear Sets in Because of My Chronic Pain


With many chronic illnesses, I live with chronic pain.

Living with chronic pain, I feel a variation of pain, likely all day, every day and I have learned to cope with it, going about my day as my body allows. I also know when I’m going to pay for a day or two, crossing that invisible line, because I run errands or want to get out and have some fun. Then there are times the pain is different, stronger and/or lasting longer than “normal” and fear sets in. It’s a quiet fear that crosses my mind and I don’t talk about it in fear of sounding like a hypochondriac to someone who can’t relate.

Having ankylosing spondylitis (AS) and Ehlers-Danlos syndrome (and a few other contributors), I have a multitude of issues, but my pain is primarily in my spine and fused sacroiliac (SI) joints. The AS has made a mess of my spine causing the chronic pain and fused SI joints. I’m always in some variation of pain and really feeling it by 3 p.m. each day. But, I can manage day-to-day and get through the days I’m paying for having fun, thanks to rest, my medication along with all the little things that help.

Then there are times when the pain is different. It’s stronger and lasting longer than normal. I tell myself it must be a flare-up coming on, it’ll pass. Previous experiences cross my mind and a part of me gets scared, the fear has set in. How long will this flare last? How bad is it going to get? Will I end up going to the ER again? As the days continue to pass with no improvement, the fear builds. How much longer can I fight this on my own? How weak am I going to get before I decide I need to go to the ER? A typical bad flare should have ended days ago, is this only a flare?

As I write this, I am just over a month into what I thought was a flare. And maybe it will end up being the worst flare I’ve ever had. But, I have developed multiple symptoms that my doctor thinks is a pinched nerve and my fear has changed course as I await seeing my pain management doctor this week. Has something in my spine changed and progressed enough to know, as AS does? Will they fast track finding the diagnosis as they did getting my appointment? Will I regain feeling and adequate blood flow in my toes? Is it going to end up surgical? Will I walk again without pain shooting from my back down my legs? When will I be able to sleep again?

I know deep down my amazing team of doctors will find the answer and not stop until they do. Just as they have in the past. I know they will ensure my pain returns to manageable, no matter the path it takes, even if it requires surgery. I know I will get better.

Today and every day following, I’ll fight the pain as I always do. I will survive the severity, taking it one day at a time. I’m a warrior, that’s what I do! But that fear will always be in the back of my mind every time the chronic pain changes in some way.

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