State of the Brock, October 2019

Also see: Brock’s Clock: What This Site Is About.

Last updated: 10/23/19

Executive summary of my severe chronic pain condition, my best understanding at this point in time. Note that as of the time of writing this, symptoms and meds are changing on a daily basis.

I have pain throughout my pelvis, on the back of my knees, in my feet, in front of my elbows on the inside of my arms, in my hands, and in my neck and shoulders.

3 years in, there isn’t a diagnosis that’s a good fit for my case, but some that have been brought up are chronic pelvic pain (initially) and fibromyalgia (eventually). I’m partial to the term “central nervous system sensitization”, which I’m not aware of being used as a clinical diagnosis in the mainstream US medical system.

The pain is generally in my ligaments, tendons, bursas, fascia, and skin.

In my pelvis, the most affected areas are my genitals, perineal region, my pelvic ani muscles, my ischial bursas, my suprapubic area.

Of these sites, I have allodynia in the skin of my perineum, along the left levator ani muscle, on the back of the knees, on my feet, in front of my elbows, and in my hands.

The neck, shoulders, and elbows respond well to oral NSAID’s and corticosteroid injections. Those components are probably a reflection at a central nervous system level of my ischial bursitis. (Hat tip to Dr. Molly Magnano for sussing that out)

The pain in all these areas can be 7–8 / 10 in intensity, with the biggest issues today being the sensitivity in my perineum, my feet, and my hands.

The pain is now significantly worse on the left side of my body at all levels.

Sitting is almost impossible. An orthopedic cushion gives me some relief by minimizing pressure on some of the hypersensitive area. Standing (in one place) also near impossible. Walking can be very tough, and especially seems so in the mornings. Using a computer for any amount of time longer than 15 minutes is becoming really difficult, as is holding a phone.

In addition to spontaneous pain at rest and severe sensitivity to touch, at the allodynia sites, I get an inability to tolerate moderately warm or moderately cold temperatures, so wearing most types of underwear, socks, pants, and shoes is usually intensely painful.

I also have IBS (mostly diarrhea) and ear ringing; sudden loud sounds are extraordinarily startling on a bad day and feel painful.

All these ares were sensitized in different progressive episodes at the timeline described below.

I believe there’s genetic predisposition for the sensitization. As of Oct 2019, a possible contributor could’ve been finasteride 1mg nightly, which I stopped for good a couple weeks ago. The proximate triggers for a progressive episode, when the pain enters a new area of my body, are anxiety and a spell of bad sleep. Not sure if both have to occur together. And I’ve scored only in the low-to-moderate range of anxiety in all behavioral test I’ve taken. So because I’ve historically been able to handle works stress well emotionally, and the progression in pain always seems to happen with a delay of a week or two after the spell of anxiety and sleep issues, the SINGLE MOST IMPORTANT THING I CAN DO is to completely avoid those conditions until I understand the sensitization mechanism better and am confident I can control it with medication or otherwise. Some kind of histamine reaction has been suggested by a couple of functional doctors I saw recently.

Two unusual reaction to substances that may provide clues: I’ve been unable to titrate to a helpful dose of low-dose naltrexone (tried twice). It actually seemed to accelerate the progression of my symptoms through poor sleep quality and/or anxiety. Magnesium glycinate affects me diarrhea-dominant IBS by fixing the consistency with 400–600mg daily, and any more causes constipation.

Diet-wise, I usually eat a ton of salads, and when things really got going, I did eat a lot of sugary snacks. Chocolate, alcohol, and spicy food are the only triggers of worse symptoms I’ve found, and generally mildly noticeable on any given day. It’s unclear if over a longer period of time, some of those cause a progression in symptoms, but that has been suggested.

I’m currently most actively looking for ways to permanently reverse central sensitization, better diagnoses, mast cell activation syndrome evaluation, and competent advice on all that.

Here’s an abbreviated progression of symptoms below. You can also see a detailed list, including meds and procedures, at the Major Event post.

• Occasional pain that started in my penis and testicles at age 20. For many years would occur only while stressed and seated and thinking hard. This was probably muscle pressure or something I pulled while weight lifting in my freshman year of college.
• Ca. 2014-2015 — The pain increased in magnitude, became more permanent and triggered by small amounts of stress while sitting. Loud sounds began being perceived as painful. Also diffuse pain in the joints of the hands with typing at a computer. The causes were stress at work and in my family and personal affairs. Here, I’ll note that I’ve had a lifelong tic of kind of squeezing my fists when really focused or day dreaming. At the same times I probably subconsciously tighten my core and my pelvic muscles.
• The pelvic pain got especially severe seemingly overnight in July 2016. Spread throughout pelvis, including the levator ani, maybe one of my adductor group muscles, around the coccyx, above my pubic bone around my bladder, as well as to the ischial and hip bursas. Allodynia in the original site in the perineal area. The apparent cause for this progression must have been mild work stress and possibly a night or two of problematic sleep — but certainly not a regular, endemic sleep quality problem. In the days just after the pain really got going, I was just working at a desk. It’s possible I spend a day the weekend before on a beach near Half Moon Bay. A few months earlier, in early spring, I’d been on a hike in New York and New Jersey. Don’t remember any infections, bites, or food issues.
• December 2016 — Developed IBS. Unclear why then. Since then, if not controlled, this leads to my rapidly losing weight.
• March 2016 —Developed neck and shoulder pain. I now believe this is a reflection in the CNS of pain in my ischial bursas. Unclear why then. This pain is controlled well with prescription NSAID’s or steroid injections. Alternatively, for about two years, it was alternatively kept at bay by taking 30mg amitriptyline nightly.
• Took diazepam regularly for a while and didn’t progress much in 2017. The diazepam was prescribed as a muscle relaxant, even though we weren’t sure at the time whether muscle tone was a driving force at all compared to sensitization. Today, I believe that diazepam period stopped my progression at the time by suppressing any anxiety and ensuring extra good sleep.
• March 2019 — The allodynia spread to the back of my legs behind the knees. There was work anxiety followed up by a poorly managed attempt to get relief with low-dose naltrexone (LDN). Going up on it too quickly from 0 towards 4.5mg gives me, and many others, anxiety and terrible sleep, especially if taken at night like most practitioners prescribe.
• July 2019 — My neck and shoulders pain started creeping back up, despite me being on the same amitriptyline dose I’d been in for years. Less clear why exactly then, but probably brought on by poor sleep while sharing my bed with a partner over a few weeks.
• September 2019 — The allodynia spread to my feet and my arms and hands. Two weeks prior, this was preceded by about a week of poor sleep, including one night of only 2 hours of sleep. Then things got even worse when I made a second ill-advised attempt to use the LDN prescription.

Current medications:

• 30 mg amitriptyline nightly, sometimes another 10mg during the day — seems to neuromodulate, helps me sleep well
• 6–12 mg tizanidine per day, 2–4g 3x / day — relaxes my pelvic muscles and alleviates the pelvic pain a bit
• 50mg pregabalin 2x / day, currently tapering up to target dose of 150mg 2x / day — we’ll see what this does, if anything
• recent shots of methylprednisone (into both ischial bursas) — gave me relief in the back of my pelvic floor and in my arm, neck, and shoulders. When this wears off, I may have to go back to regular NSAID’s like Etodolac most recently.
• diazepam 5mg / baclofen 5mg into a single suppository — as needed. Helps a lot with sitting when I’m unable/unwilling to use my orthopedic cushion.
• Magnesium glycinate — 400–600mg/day — happens to prevent my IBS diarrhea (which is confounding to almost everyone because magnesium is used to prevent constipation)
• Vitamin D 10 UI/day (was 4–6 IU till recently— was just told fibromyalgia patients feel better when they’re on the higher side of the suggested Vitamin D range for the general population.
• Turmeric — 5g/day — hoping it helps with neural inflammation
• Vitamin B12–2mg/day — general nervous system health? I’ve been low on this, and everyone tells me to take it so I do.

Current goals:

• Prevent any further progression.
• Reverse central sensitization.
• Improve diagnosis and clear further potential root contributors, like food sensitivities.
• Be able to sit, stand, walk, and drive comfortably — any of that longer than a few minutes with minimal pain.

Text update log:

• 10/7/19: Added note clarifying rapidly evolving status of symptoms and meds.
• 10/23/19: Edits for clarify, added note about histamines, link to full major event log, cut some details from short symptoms timeline.
• 10/29/19: Added some dietary notes.