Doctors Thought My Chronic Pain Condition Was Flaring Up. It Ended Up Being Gout.

As told to Nicole Audrey Spector

In 2009, I was diagnosed with complex regional pain syndrome (CRPS), a condition that causes chronic pain flare-ups and cannot be cured. The pain, hot and horrid, can be crushing. And it knows no boundaries, occurring throughout my body.

The following year, I started experiencing a new kind of pain — something even more intense, primarily affecting the joints of my feet. I could hardly walk at times. This new pain, combined with what I was familiar with from the CRPS, was so unbearable that there were times I wished God would take my life. Death would be preferable to this endless agony.

Because I have CRPS, my primary care provider (PCP) just assumed this new pain was related to that. Doctors threw pain medications at the problem. I didn’t want to be reliant on opioids, but there seemed no other way for me to cope with being alive.

The pain pills not only made me feel blurry, they were hurting my kidneys, which was extremely worrisome. But what really forced me to go off the pain meds was what my grandson said. He told me (and I’ll say it without the curse words he used) that I was impossible to be around and that I caused everyone to walk on eggshells in my presence because I was so irritable.

This was devastating to hear and I broke out in tears.

After that talk, I ditched the pain pills and sought out other ways to cope. My mission was to at least take my mind off the explosions of pain.

I found a mental escape through art, specifically, in making jewelry. Though this activity helped take my focus off the pain, it didn’t make me feel any better physically. Life was still so hard.

Meanwhile, my symptoms were getting worse. My feet would literally bend backward. My toe swelled to the point where I couldn’t wear shoes. I can’t even describe the pain. It was worse than anything I’d experienced in the past, including kidney infections, broken bones and even cancer.

All this agony had to be directly tied to the CRPS, right? That’s what the doctors told me.

Then I met with a rheumatologist. He asked me whether I knew anything about gout, an inflammatory form of arthritis that can cause severe pain, redness and swelling.

I didn’t know much about gout and didn’t have any family history of it. I imagined it as an old man’s disease.

The doctor gave me a blood test to measure my uric acid levels, which were higher than they should be. When uric acid builds up in your blood, it causes urate crystals to build up in your joints or surrounding tissue and, I later learned, anywhere that blood flows.

That’s gout.

The rheumatologist suggested that I go on medications to manage the gout flare-ups, but I resisted. I wanted to treat gout naturally. I looked into some alternative remedies and tried things like tart cherry juice, which can, in some cases, help treat gout to some extent. I also made some dietary changes to help quash the pain. Unfortunately, nothing really made a difference.

My pain, a raging fire inside me, did not cease. I went on in misery for another six months, determined to not go on any medication.

One day I decided that I’d had enough. I met with a new rheumatologist who said that all these natural remedies for gout were just snake oil and that, for many people, the only effective way to prevent gout flare-ups is to take prescription medications. I finally opted to give the medications a try.

One of them was to address the inflammation I had during a flare-up, and the other was to lower my uric acid levels, the underlying cause of gout. After taking the uric acid–lowering medication for a bit, the gout flares disappeared. Over time, I was able to stop taking the anti-inflammatory, and now I just take the medicine that controls my uric acid levels.

After two years of dealing with the horrible effects of gout, I am now symptom-free. Of course, I still have CRPS, so I can’t say I’m pain-free, but at least the gout is under control.

I’m now a moderator of a gout support group, where I fiercely and unapologetically advocate for clinical treatment of gout and aim to shatter myths around snake oil remedies that don’t get to the root of the problem, uric acid.

Gout is a serious disease. It can affect your heart, liver and kidneys — all organs you can’t live without. I urge anyone who has or thinks they may have gout to skip the PCP and head straight to a rheumatologist or gout specialist.

Why should they do that? Because gout may not be well understood by many PCPs. There’s a dangerous gap in knowledge that must be filled. It is my mission to fill this gap as best I can and to inform others that gout is real, gout can be deadly and gout cannot be successfully fought with, say, cherries (though wouldn’t that be nice?).

I’m still not a huge fan of taking medication to manage gout, but I know it’s necessary for me to live a life worth living. I’d rather have quality of life than pain that knocks me right out of commission. Now, I can enjoy my friends and family. And there are no more complaints from my dear grandson about my behavior because I’m so much happier now.

This educational resource was created with support from Horizon Therapeutics.

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