As told to Nicole-Audrey Spector
In 2009, I was diagnosed with Complex Regional Pain Syndrome (CRPS), a condition that causes flare-ups of chronic pain and cannot be cured. The pain, hot and horrible, can be overwhelming. And it knows no boundaries and happens throughout my body.
The following year, I started experiencing a new type of pain, something even more intense, mainly affecting the joints in my feet. Sometimes I could barely walk. This new pain, combined with what I knew about 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 in painkillers to solve the problem. I didn’t want to rely on opioids, but there didn’t seem to be any other way to survive.
The painkillers not only made me feel fuzzy, but they made my kidneys hurt, which was extremely worrying. But what really made me stop taking painkillers was what my grandson said. He told me (and I will say this without the profanities he used) that it was impossible to be there and that I made everyone walk on eggshells in my presence because I was so irritable.
It was devastating to hear and I burst into tears.
After that discussion, I gave up the painkillers and looked for other ways to cope. My mission was to at least stop thinking about the explosions of pain.
I found a mental escape through art, especially in jewelry making. Although this activity helped me focus on the pain, it did not make me feel better physically. Life was still so hard.
During this time, my symptoms were getting worse. My feet were literally curving backwards. My toe swelled to the point that I could no longer wear shoes. I can’t even describe the pain. It was worse than anything I had experienced in the past, including kidney infections, broken bones and even cancer.
All this agony had to be directly linked to CRPS, right? That’s what the doctors told me.
Then I met with a rheumatologist. He asked me if 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 had no family history. I imagined it as an old man’s illness.
The doctor gave me a blood test to measure my uric acid level, which was higher than it should be. When uric acid builds up in your blood, urate crystals build up in your joints or surrounding tissues and, I later learned, anywhere blood flows.
It’s the last straw.
The rheumatologist suggested I take medication to manage the gout flare-ups, but I resisted. I wanted to treat gout naturally. I’ve researched alternative remedies and tried products like tart cherry juice, which can, in some cases, help treat gout to some extent. I also made some dietary changes to help ease the pain. Unfortunately, nothing really made a difference.
My pain, a fire raging within me, has not stopped. I continued in misery for another six months, determined not to take any medication.
One day I decided I had had enough. I met a new rheumatologist who told me that all these natural gout remedies were just snake oil and that for many people the only effective way to prevent gout flares was to take prescription medications. I finally decided to try medication.
One was to treat 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 a little medicine to reduce uric acid, the gout flare-ups disappeared. Over time, I was able to stop taking the anti-inflammatories and now I only take the medication that controls my uric acid levels.
After two years of battling the horrible effects of gout, I no longer have any symptoms. Of course, I still have CRPS, so I can’t say I’m not suffering, but at least the gout is under control.
I am now a moderator of a gout support group, where I fiercely and unapologetically advocate for clinical treatment of gout and aim to bust the myths around snake oil remedies that don’t address the root of the problem, uric acid.
Gout is a serious illness. 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 avoid PCP and go straight to a rheumatologist or gout specialist.
Why should they do this? Because gout may not be well understood by many doctors. There is a dangerous gap in knowledge that must be filled. My mission is to fill this gap as best I can and inform others that gout is real, that gout can be fatal, and that it cannot be successfully fought with, say, cherries (but wouldn’t that be nice?).
I’m still not a big fan of taking medication to manage gout, but I know it’s necessary for me to live a life worth living. I would rather have quality of life than pain that puts me out of commission. Now I can enjoy my friends and family. And my dear grandson no longer complains about my behavior because I am so much happier now.
This educational resource was created with support from Horizon Therapeutics.
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