My History
Fibromyalgia - is a chronic condition that causes pain and tenderness throughout the body. It can also cause fatigue, sleep issues, and cognitive problems.
Alexithymia - is a personality trait that makes it difficult to identify, understand, and express emotions. It's also known as "emotional blindness"
When I met my now-wife, we frequently discussed how my emotional responses differed from what most would consider "normal." It took time to find the right word for what I was (or wasn't) feeling.
After research and therapy sessions, we discovered Alexithymia. Finally having a name for it brought more questions than answers.
But it goes far beyond simply not recognizing or describing them. It fundamentally alters one's experience of life. Yes, emotions are still present. Yes, they still influence my decisions (I believe). I still experience stress and anxiety, including thoughts of impending doom or catastrophizing scenarios. This is particularly challenging when I can't explain how these thoughts make me feel.
I believe this may have contributed to, or even caused, my current fibromyalgia. When emotions become overwhelming, regardless of the emotion or its cause, I tend to have a sort of breakdown. To avoid this, I strive to minimize situations that might trigger it. Overwhelming situations make me want to succumb completely to the effects of Alexithymia. When I do, I become completely detached from the world around me.
I exert significant effort to try and feel my emotions. I constantly push myself to understand the emotions of others. I expend more effort than anyone realizes to "fake" emotional responses so I appear normal. Social situations are incredibly draining. When alone, I usually become completely detached from the world around me. For example, I find it easy to suppress laughter during "try not to laugh" challenges, even though I recognize the content as "funny" intellectually. "Funny" is just a word to me, not a descriptor of an intense internal feeling. This applies to all emotions.
I admit, anger seems to be the easiest emotion to feel and express. I'm angry that I'm different, even if I don't fully understand the nature of that anger. I certainly don't know how to describe or express it appropriately in the moment. I simply become overwhelmed and want to release it. This constant state of readiness for the next overwhelming situation has likely contributed to chronic bodily tension. I'm constantly second-guessing myself – am I overreacting? Underreacting? Displaying the wrong emotion? It's all incredibly exhausting and overwhelming.
Alexithymia has also been linked to the autism spectrum. This "discovery" wasn't exactly comforting. that explains a few things, I suppose.
Now that I've explained Alexithymia, I can describe how my pain began.
I don't know the exact cause of my fibromyalgia. However, my journey started with a severe case of pneumonia, which left me ill for two weeks. Shortly after, I developed shingles at the age of 34. While not unheard of, shingles at that age is still considered relatively uncommon.
Following shingles treatment, I remained symptom-free for about six months. Then, I began experiencing significant pain in my right ribs during physical activity. This pain exceeded what could be attributed to normal exertion and often left me doubled over. Medical professionals attributed it to recurrent shingles, despite the absence of a rash. Since there was no rash, they deemed it untreatable and sent me home. This episode of pain lasted for approximately three months before disappearing as suddenly as it began.
I enjoyed another six months of pain-free living and was able to return to work. Unfortunately, this respite was short-lived.
A new, excruciating pain emerged in my lower back. Initially, it was localized to a small area on the left side of my spine, about three-quarters of the way down. Even minor movements caused intense agony throughout my back. Relaxation offered no relief.
Over time, the pain lessened in intensity but spread. It extended upwards to my shoulder blades, creating a sensation as if fingers were reaching under them and pulling them away from my back. My wife observed strange markings on my skin, which she documented with photos. Despite these observations, none of the doctors seemed concerned. These markings resembled varicose veins but were dynamic, changing in appearance as my pain fluctuated. They were never in the same location, always appearing on my back and near my shoulder blades, but shifting positions with each occurrence. My wife and I believe these markings might represent inflamed and visible nerves. We suspect they may be causing nerve damage, but this theory remains unconfirmed by medical professionals.
I developed severe touch sensitivity on my upper back and shoulder blades. My mid-back and rib areas feel constantly bruised and injured. My lower back feels perpetually strained, as if I had severely pulled a muscle or tendon. The pain did not remain confined to my back. It began radiating down both legs from my buttocks. My ankles, feet, legs, knees, and hips have become increasingly painful. Nighttime brings excruciating leg pain, as if my legs are being pulled apart. My arms and hands were next. I experience an occasional tingling sensation, similar to hitting your funny bone. My wrists, arms, hands and fingers feel like they need constant popping, accompanied by significant joint pain.
Furthermore, the pain has now extended to my neck, causing severe neck aches that frequently trigger debilitating migraines. Almost all of my muscles in my body are tense and constantly full of knots, resulting in persistent pain.
Throughout this ordeal, I've been prescribed a variety of pain medications, including nerve blockers, to manage the pain. However, these medications offer limited relief. Even the maximum dose of gabapentin fails to adequately dull the pain. Tramadol and baclofen, intended to ease muscle tension and relaxation, have also proven ineffective in alleviating the persistent pain. I've even been prescribed buspirone for anxiety in an attempt to reduce stress levels and, consequently, lower my pain levels, as stress and anxiety can exacerbate my condition.
Sleep has become increasingly elusive. Even now, I sit awake in pain while my wife sleeps peacefully behind me. I am incredibly grateful for my wife's unwavering support. She has been far more understanding than I could have ever imagined. She stands by me even when I feel like an utter failure. My condition makes it impossible for me to maintain employment. Thanks to her, I am able to stay home and manage household responsibilities while she provides for our family. Of course, this is a significant financial burden in today's economy. She strives tirelessly to make ends meet. My loving daughter and son also do their best to help, although as children, their attention can easily be diverted, and they have their own priorities to contend with. My daughter is preparing for college soon, and my son is unfortunately required to spend most of the year with his biological father. (Sadly, I'm only his stepfather.)
I believe this accurately describes my current tribulations.
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