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.
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