Karen Shares How She Handles Ongoing Chronic Pain

DISCLAIMER: The views of this writer are there's alone. At Hope Instilled we do not recommend or endorse any medications and/or treatments. Each person is different and each treatment brings differing results. What works for one might not work as well, or at all, for another.

My life with chronic pain...Fighting chronic pain is a full time lifelong job and when our brains are bombarded with pain signals, it takes up needed space and energy from other matters. It is limiting in a very multifaceted way. I had endometriosis at 13. I was considered a hypochondriac as a child and never slept well but was always tired. Twenty years ago, I was finally diagnosed with Fibromyalgia, after having three kids. Then I got whiplash (parasailing) and developed severe occipital neuralgia which also triggered chronic migraine. Meds stopped working and I spent over half my days in the dark. My spine started to degenerate in my 30s. I fell and broke my left ankle which became RSD/CRPS. That is some agonizing pain!! Tendinitis years later became RSD in my wrist also. I got frozen shoulder on top of it all for 14 months. I’ve been told I’ve got autoimmune issues (mixed connective tissue) but I stopped caring about a diagnosis (after 2 decades) and focused on self-care.

I get steroid epidural injections multiple times a year for lower back to treat nonstop nerve pain in hip and leg. I continue even after I had a CSF leak from injections, which was a horrifying 911 scenario that took me months to recover from. I had to lay flat and in pain for 3 months. I learned how stress affects the body and pain. And how heat helps me. And that I’m very fragile. And that I must deal with memories, worries, conflicts etc., in a very calm way to help ease my suffering. I learned that Botox for migraine helped. I take tramadol, lyrica and cymbalta. Ambien flexeril and frova. Weed helps pain more than opioids. I now live in south Florida in winter because I can only hibernate in bed in Ohio winters. I am triggered by planes, loud events with flashy lights like sports arenas and concerts. Being too close to a marching band once triggered the worst migraine. Autumn is the toughest season, flaring all of my permanent chronic conditions. I learned to not wish away my pain but to accept that I will hurt, and just hope to hurt less somedays. I stay home and still a lot of the time to simply protect myself.

My three adult daughters all struggle with chronic pain (very genetic) and/or mental illness issues including forms of anxiety and depression. I maintain that managing one’s mind and emotions is crucial, and limiting things that are triggers. None of this can work if you feel negative, angry or defeated. I cannot control my anger about injustices in the world, but I can control how my body reacts. Once in a while, I go into a head to toe flare-up and there’s nothing worse but still, I always know it will calm. I make plans because I’m optimistic. I’m disappointed when I have to cancel them. Friends and family can only understand to a point, never having had to fight those levels of pain. Don’t hold it against them. It never goes away but always know better days will come. Worse ones too. I’m a very matter of fact person so I believe that helps my fight. I certainly hope that people communicate their pain and feelings since pain management can only do so much.