TL;DR: what condition do I have? I have a difficult musculoskeletal/soft tissue problem that I can’t diagnose, much less remedy. Putting this here in case someone happens to have better ideas.
Doing nothing—being couch-bound and not using my hands—is the only thing that keeps my body from getting worse.
It’s been two decades of slow deterioration. Over the years, it has gradually transitioned from an annoyance to where I have to give up sports and hobbies to a major impairment on quality of life. I don’t consider myself disabled yet but I’m on my way there.
Most physical activity causes a dull ache that amplifies if I keep doing it. As such, I’ve given up everything except for two things that are hard to give up: standing up and typing. Despite remote work and heavy reliance on speech recognition software, standing and typing are hard-to-avoid activities.
The pain is systemic; it’s not fixed in one particular place. It feels joint- or tissue-based and primarily in hands/wrists, lumbar, neck (scalenes), and arms. A nagging muscle tear or groin pull that never seems to heal. Never sensitive to the touch and it doesn’t feel like nerve damage.
This pain is connected to activity. It’s not spontaneous. If I type for more than five minutes, wrist/hand pain begins until I cease the activity. If I stand for more than five minutes, lumbar and hamstrings start to hurt until I cease the activity.
After two decades of this, the tactic that helps the most is taking micro- and macro-breaks from the offending activity (e.g., minutes and days-long breaks from typing, standing, walking). If I avoid the offending activity altogether, I start to feel normal again after a few days. The progression has gotten bad enough that I have given up most aspects of an active life.
- Age: 44
- Sex/Gender: M
- Height and weight: 6’0″
- Race/Ethnicity: White
- Geographic location (eg. Canada): Texas
- No structural damage (several MRIs, x-rays).
- Spent a week in 2020 at the Mayo Clinic in Minnesota getting a huge battery of tests; they couldn’t reach a diagnosis.
- Multiple doctors and specialists have told me it’s not (and I agree with them) the following: tethered cord syndrome, arthritis, fibromyalgia, tendinitis/tendinopathy, autoimmune problems, neurological, carpal tunnel.
- The closest thing I have to a diagnosis is that it’s a connective tissue disorder. I’m missing key symptoms of all the variants of Ehlers Danlos, however; I have no hypermobility, stretchy skin, bladder issues. With Ehlers Danlos, it’s not the condition itself that directly causes the pain and problems. The condition makes your connective tissue not do its job, which makes you get injured constantly and it gets worse over time. This is the closest thing to my experience.
- I’ve had this condition for almost two decades now and it has required me to do less and less physical activity. I’m aware of the “use it or lose it” way of thinking about the body, and I’m losing it. I gave up weightlifting in 2018 because I kept injuring myself. But exercise and activity—even guided by expert physical therapists—is becoming harder to do without more injuries.
- I’ve spent multiple months with at least 5 different physical therapists over a ten year span.
- No fatigue or energy issues—I spend time on chronic pain forums and I find it hard to relate to that experience. I am an entrepreneur/educator and I love my work and I would work 5x more if my body would cooperate.
- Mental health is good because my life kicks ass: I love my partner, my work, and my friends. These things have kept me sane every time I have to give up something I love: guitar, basketball, weightlifting, certain career fields, etc. I am naturally level-headed and not prone to anxiety or depression. But it’s getting frustrating to only have reading and netflix as what I can do without worsening my situation.
- Family history doesn’t reveal much other than my mom passed away due to a very rare condition: scleromyxedema. It involves connective tissue (which seems related) but also skin issues (which is not; I have no skin issues other than psoriasis once every 3 years or so). None of my symptoms really overlap with it though.
- I got Lyme Disease in 1999.
- I’m pretty much an expert in ergonomics at this point. I work lying down most of the time and I use speech recognition tools on the phone and computer.
- Modalities I’ve tried: About 15 different physicians and specialists in traditional medical fields. I’ve tried alternative approaches as well: Pilates, Acupressure, Acupuncture, Alexander technique, ART, MBSR, Chiropractor, Dry needling, Massage, Trigger Point Therapy, Psychotherapy, Restriction diets (Coffee, alcohol, wheat, corn), Meditation, Steroids (cortisol), Ayahuasca.
This post is a bit of a shot in the dark but trying times call for creative approaches.
If you have any ideas of what I might have and how to fix it, drop me a line. my name at actionworks dot co (not dot com).