I mentioned in this blog post, The measure we use for life — Brainless Blogger (re-blog of brainlessblogger.net/2019/05/27/the-measure-we-use-for-life/) that I would do a follow-up post.
Bit of background on my chronic pain journeys. Yes, I said journeys. Over the years, I have had multiple chronic pain journeys with relief lasting anywhere from months to years.My current chronic pain issue is AS – Ankylosing Spondylitis (AS) and Me. I do have a side issue of ocular migraines, but that’s more irritating than painful at this stage in my life.
Starting in high school, I had massive headaches that were initially undiagnosed. Turns out to be several different things going on at once or developing shortly after an issue gets resolved. First, chronic recurring ear infections; next, migraines; and lastly, sinusitis in no particular order as I believe sinusitis was the second diagnosis after the ear infections were fixed. It took a while to diagnose each condition as doctors wrongly assumed their diagnosis was the only cause. Thankfully, I have a high pain tolerance as these and new chronic pain conditions would be issues on and off for decades.
The ear infections were eventually stopped after putting tubes in my ears. Unfortunately, they would flare up about every 5 – 6 years although my last flare up was in 2005. That was cured by a second ear surgery to remove the infection. The first ear surgery was around 2000 – 2001 and was done by the same ear surgeon who did the second one.
Sinusitis was diagnosed around 40 years ago if memory serves. It was done after being admitted to the hospital for headaches, cause unknown. The only thing that cured this problem was moving out of state to Kansas in 1983. I later moved back to Mississippi several times, but the sinusitis never came back.
Migraines started at some point, but it’s long enough ago I don’t remember when I was diagnosed. It was around the mid-1990s when the migraines went from the painful ones to ocular migraines. In my case, the ocular migraines are pain-free, but irritating.
Blood pressure headaches – these started at some point, but I don’t know when. They are intermittent, and present in atypical ways. These are always in the front left side of my head. According to some medical experts, that is not typically where they occur. They come and go although I can go a long time without a blood pressure headache.
The most recent chronic pain was misdiagnosed as bursitis or tendonitis numerous times before an MRI correctly diagnosed it as AS. These episodes tended to flare up about every 5 – 10 years. Weird thing was I saw a neurosurgeon who should have caught it back 15+ years ago.
One of my rules of thumb is to avoid Sunday trips to the Emergency Room (E. R.) as those tend to be long drawn-out visits most of the time. In January 2018, I made the trip to the E. R. because the pain was that bad. The bursitis / tendonitis diagnosis was the initial suspect although the chest pain moved me to the head of the line. They ruled out heart attack, referred me to my Primary Care Physician (PCP). He ordered an MRI, told me it was neck arthritis, and sent me to a neurosurgeon with the recommendation of cracking me open like a walnut (my words, not his). I had to get the MRI from the hospital and that’s when I saw the AS diagnosis. I opted against the neck surgery at that time (roughly early 2018).
In a strange occurrence that I didn’t understand at the time, my car broke down in mid-March 2018. I couldn’t afford to fix it and still can’t. After about a month of being car-less, I was about to get a bicycle which is my main mode of transportation most days. The advantage is the bike riding (around 4 – 5 miles/day; 5 – 7 days a week) has reduced my pain level from excruciating to bearable. That means I can forgo some of the serious painkillers.