I have an unknown/suspected connective tissue disorder, Ã la Elher Danlos. I was looking into genetic testing for it this spring, but clearly that’s being put off. I’ve had a history of joint mobility issues, bruising, POTS, etc. My horse ended up having down time for a year and in the process of bringing him back to work, I developed severe back pain that progressed to all over joint and muscle pain. I was barely functional. I tested negative for Lupus, RA, Lyme disease. My PCP referred me to a PT and in the process of the initial interview the PT asked if I’d ever heard of Ehler Danlos, etc. I knew I likely had some sort of issue but it was always manageable with lifestyle changes so I never pursued it. Turns out things really do start falling apart in your thirties!
I started with debilitating pain in August 2019. Finally got into the PT in October, missed lots of appointments for travel, but really got to work on it by the end of the month. Still literally crying on my couch from pain in the evenings in November but by December I was barely clicking and nearly functional. Today I’m 95% normal and rarely click. It takes a major lifestyle change between exercising perfectly every day, knowing how to control my body at all times without slouching or creating more issues, slowing my riding progress and massage therapy.
These days I have a set in stone PT regime I do 5 days a week. I learned it under a PT interested in connective tissue issues. My work out rules are strict. I absolutely, 100% can’t do any old exercise. I 100% do not work through joint pain. Muscle strain and pain is good. I have to bulk up my muscles to take over the job for my shoddy ligaments and tendons. You have to stress muscles to build them. If my bicep muscle hurts, feel the burn! (Within reason - it’s gone within 30 minutes of my exercise.) If my biceps tendon groove is burning in my shoulder, I immediately stop and change what I’m doing. My knees aren’t ever allowed to hurt, but my thighs should burn a little. A tiny, intermittent shake during one step in an exercise is okay at first. If I’m trembling at any weight or exercise, I have to stop. I’m already unstable. I can’t add extra lateral movement to any exercise. If I fatigue my muscles, the joints, tendons, and ligaments have to take over, but the entire point is they can’t and then I’m at serious risk of doing permanent damage.
My exercise plan is such, that I know if I wake up in pain, I will actually feel better after exercising. What you’re describing is really worrisome. I steadily exercise my muscle groups one by one, with perfect control. No jamming my joints straight or folded, no bopping around. I build my weights up by half a pound to a pound over weeks. I really limit lunges and squats and they are always slow and controlled, focusing on perfect form rather than fierceness, speed, or excessive numbers. My progress is slow. Overdoing it can result in a tear. I overdid my knee two months ago and got lateral knee pain all day long, even with decreasing my knee exercises. Totally quit my knee exercises until I was without pain for two weeks, then slowly started back in to my lowest stress knee work. I’m still not back to weights at this stage but my knees are stable again and I can lightly jog with my frolicking dogs and feel no pain. Haven’t experienced that in years.
All that to say: slow done, progress should be in dribbles. Focus on perfect work rather than intensity or the goal. You will get there, but not if you hurt yourself in the short term
My advice, when the world is normal again: a PT with Ehler Danlos experience and a massage therapist. It is harder to recover than to build up properly the first time. Just like with horses!
