State of the Brock, Aug 2021

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

Last updated: 10/15/21

Summary, and then details, of my severe chronic pain condition, my best understanding at this point in time. At this point, symptoms and treatment are evolving frequently.

Summary

I have had severe chronic pelvic pain since August 2016, which in recent years has spread to most of my lower body. I don’t have a well understood condition as a diagnosis, just “neuralgias” and “syndromes”, probably most significantly Ehlers-Danlos Syndrome — hypermobile type (hEDS). I’m increasingly disabled, most recently struggling with everyday things like doing the dishes.

As of August 2016, age 30, I had occasional, mild pain in my genitals and hands.

At that time, I developed pudendal neuralgia/pelvic pain, meaning pain in the classic area between my belly button and my mid-to-lower hamstrings.

Later, every 3-6 months or so, something new would start hurting, in this order: My neck and shoulders, my hips (stopped with meds, as did the hand pain), the soft area behind my knees, my feet, my hips again (despite meds, outside, bursas), my knees (medially, opposite that hip pain), my hands again (despite lots of meds).

Pain is a lot worse on the left, better during activity, but worse after activity. Without amitriptyline, pregabalin, and diazepam, I would be bed bound.

I’m currently — October 15th, 2021 — evaluating various possible pathologies with Dr. Fraser Henderson, a neurosurgeon well known for EDS and rare diseases. Also preparing for a spinal cord stimulator trial, DRG stimulator specifically.

Less likely to do an endoscopic surgery to repair minor annular tears in my lumbar spine, after interviewing patients for whom similar work has been a cure, but as I have no existing perceived low back pain or a positive epidural injection response, and as I have widespread joint pain elsewhere, I am pretty worried about attempting that.

Details

I have muscle pain and sensitivity. Depending on what meds I’m on, I also have the same issues in my upper body, but they’re so far better controlled.

The original site of my pain was my genitals, since age 20 in 2005, and from there it more recently spread into the classic pelvic pain areas (suprapubic area, upper hamstrings, adductors, buttock, tailbone, occasionally between tailbone and bottom of lumbar spine — hard to tell). Later, the area behind the back of the knees and the feet involved, and later still, the hip joints.

There’s a different pain throughout the joints of my wrists and hands that flares with activity. This may have more to do with a lifelong tic and osteoarthritis there, or it could be related to lax collagen.

My biggest issues are sitting and wearing most types of clothes below the belly button, although lately any position and even walking can be extremely challenging.

I am told I have fairly advanced osteoarthritis in my hips and SI joint for my age.

5 years in, I’m still trying to paint a better picture of the reasons for my pain, although it’s been suggested a hypermobility spectrum disorder, congenitally shorter pedicles, unusually thick ligaments on MRI, an unusual straight spine, occult tethered cord, and/or spinal degeneration play a role. Following anecdotal experiences of a couple patients I’ve met, and the recent work of Drs. Goldstein and Kim in San Diego, I’ve been pursuing spinal injections and other procedures, considering an endoscopic annular tear repair of my L5/S1 and L4/L5 discs. I am very concerned about undergoing such a procedure since no injection or other procedure I’ve ever had done has provided substantial relief for any amount of time, and generally I get worse over time, with procedures lately appearing to speed up the progressions.

A long list of tests and procedures has failed to point to any well-understood systemic issue. I have failed pelvic floor PT (5 months once a week), as well as an advanced comprehensive ortho PT program, DCT for Pelvic Pain (9 months 2hrs daily). And the later spread in symptoms seems universally assumed to be due to central nervous system sensitization.

I have a significant degree in hypermobility, 6/9 on the Beighton scale, and striae around my hips and knees. Known mold exposure. I have a history of autoimmune disease on my mother’s side, and my mom and sister have mild hypermobility.

Other diagnoses that I’ve been given include fibromyalgia and mast-cell activation syndrome. These days, I consider them unlikely to play a role or be actionable.

Current goals:

• Make a decision on lumbar disc treatment, which could possibly slowly help and/or add more severe back pain and sciatica to my woes.
• Find a medication regimen that could allow me to work again as a software engineer.
• Prevent any further progression.
• Reverse central sensitization.
• Improve diagnosis and clear further potential root contributors.
• Be able to sit, stand, walk, and drive comfortably — any of that longer than a few minutes, with minimal pain.

Current major treatments:

• Pharmacology — see below.

Current medications:

• amitriptyline — 30mg nightly — seems to neuromodulate and help my neck, helps me sleep well.
• pregabalin — 150 2x / day. This helps mask some of the sensitization in my feet and neck.
• diazepam 5mg / baclofen 5mg in a single suppository — nightly. Helps with sitting. Helps with pain all over. It used to prevent my issues from progressing during 2018, but it either lost that effect on me, or never had it (coincidence).
• vitamin D — 5 UI/day
• vitamin B12 solution — 10mg/day — general nervous system health.
• Thorne B-Complex #12–1 cap/day
• molybdenum — 0.5mg/day

More:

The pain is generally in my muscles, ligaments, bursas, fascia, and skin. Used to be dominant slightly left of center, but now also has a strong right side, on the outside near the hip bursa, probably related to a couple treatments I tried.

In my pelvis, the most affected areas are my suprapubic area (fascia over the bladder and prostate), perineal region, anal sphincter, my genitals, my levator ani muscle.

The neck, shoulders, and elbows, also in pain, respond well to oral NSAID’s and corticosteroid injections (elsewhere in the body).

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

The locations, distribution, and numerous nerve blocks point more to issues at the central nervous system level than anywhere else, though a root cause remains elusive.

Sitting is almost impossible. An orthopedic cushion used to give me some relief by minimizing pressure on some of the hypersensitive area, but lately has been less useful. Without pregabalin: Standing (in one place) also near impossible. Leaning back against most surfaces would even be painful. Walking can be very tough, and especially seems so in the mornings. Using a computer for any amount of time longer than 15 minutes has occasionally been really difficult, as has holding a phone, due to hand and neck pain.

Because of the spontaneous pain at rest and severe sensitivity to touch at the worst sites, wearing most types of underwear, socks, pants, and shoes is usually intensely painful, particularly without pregabalin.

All of the above is significantly improved by diazepam, but less so of late.

I also have:

• IBS (mostly diarrhea), controlled well with magnesium supplements
• ear ringing, loud-sound sensitivity
• Raynaud’s Syndome on my hands in colder temperatures (since 2020)
• a scalp rash, aggravated by animal fats, in particular red meat (since 2017)
• mild unprovoked genital arousal (occasionally severe — under stress)
• All these ares were sensitized in different progressive episodes at the timeline described further below.

From lab work, the following microorganisms appear to be present in my body:

• HHV 3 (Herpes zoster),
• HHV 5 (CMV),
• HHV 6,
• and chlamydophila pneumoniae, all of which I have IgG antibodies to.

Lyme tests have been inconclusive. Bartonella elizabethae was perhaps detected, but herbal treatments for it had no effect (IGeneX 3/2020, IgG positive, IgM negative)

The proximate triggers for a progressive episode, when the sensitivity enters a new area of my body, are two. One is either:

• anxiety or a spell of bad sleep
• an otherwise excited state of neurotransmitters in my CNS, caused by either ingesting a substance like psilocybin or LSD, or by a neurochemically traumatic event like a minor wisdom tooth extraction surgery
• intense physical activity, like sprinting up a mountain or a brief soccer game, or like weightlifting as part of physical therapy
• repetitive or prolonged mechanical stress on e.g. the tissue around the back of my knees (from standing a lot at work) or
• spinal injections or other procedures (epidural lysis of adhesions)
• or even simply time

I’ve scored only in the low-to-moderate range of anxiety in all behavioral test I’ve taken.

Mycotoxin testing has shown me to have had exposure, but the timing, on and off at the space in question, hasn’t correlated much with the timing of my symptoms. See mycotoxin testing details in previous “State of the Brock” summaries.

No tick bites or rashes in recent memory. A lot of hiking as a teenager in Bulgaria though.

Severe exercise intolerance. For about 24 hours after volleyball, low-intensity basketball exercises (not games), or rock climbing, I have severe flares.

Also flares after glutathione, low-dose naltrexone, or cholestyramine (toxin binder).

Low-dose naltrexone seems to only make me worse at any dose. Three attempts made so far, initially with a botched protocol, but the last time simply when reaching 0.2mg/day.

Diet: I historically ate a ton of salads, and when things really got going, I did eat a lot of sugary snacks too. All manner of elimination diets, keto, and more have failed to produce much benefit. Chocolate, alcohol, and spicy food trigger worse symptoms.

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

• Spring 2006 — 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. I thought 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.
• July 2016 — The pelvic pain got especially severe seemingly overnight. 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. Possibly lifting some heavy stuff after a year of limited exercise. In the days just after the pain really got going, I was just working at a desk. A few days prior, I’d been on a beach near Half Moon Bay. I carried something heavy for a long distance, but don’t remember issues on the spot. A few weeks earlier I had had a weed edible. 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. Since then, if not controlled, this leads to my rapidly losing weight. Developed a scalp rash.
• 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. Later, I thought diazepam stopped my progression 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.
• December 2019 — Started taking diazepam regularly again based on the mast cell stabilization theory. A mycotoxin test by Great Plain Labs showed multiple metabolites in my urine, and the provocation protocol for it, liposomal glutathione and sauna, caused a major flare. Dieting, taking toxin binders, and learning DNRS. Feeling stable.
• February 2020 — Realized I was in a flare reacting to, most likely, cholestyramine. Stopped all binders. Was prescribed fish oil, Parasym Plus, and Mirica, to beat back the flare, which worked at least partially.
• March 2020 — Had home evaluated for mold, found mold, began remediation of home and possessions, and moved out. A Neuroquant MRI later did not show a mold-exposure-like profile, but did show an unusually high gray to white matter ratio. The reading was, “a pattern that is consistent with traumatic injury, although it’s also seen in normal people”. Smells funny like all the “unusually advanced osteoarthritis” that kept popping up on all my spinal MRI’s.
• April through July 2020 — Various IV and oral mold treatments failed to produce any results: IV phosphatidylcholine, IV ozone, ketogenic diet for a couple months.
• August 2020 through March 2021 (ongoing) — Extensive physical therapy program with Dynamic Contraction Technique for Pelvic Pain. No improvement whatsoever. Stronger back and legs feel nice, but pain is all the same.
• February 2021 — Pain progression into knees as a result of PT, strength training, and possibly wisdom tooth surgery. Some normal light pain in knees in the weeks leading up to the event, given the exercises undertaken, nothing sharp. But as all prior cases — no indication that the pain would turn weird and would stay permanently.
• April through August 2021 — Pain progression into hip joints, right buttock, occasional sciatica-like pain down the right posterior thigh in a more focused line, right down the middle, vs the diffuse nature of my pain in general. This last pain when pregabalin starts to wear off, and shows up during activity vs rest.

Text update log:

• 08/19/21: Wrote the first version.
• 09/09/21: Added the summary section at the top.
• 10/15/21: Reworked summary to reflect recent work with Dr. Henderson, like hEDS diagnosis and ruling out tethered cord, and DRG stimulator trial plans.