You might have hEDS. I do! I used to work as a research scientist, so I’ve read a fair amount of primary literature, plus I have twenty years of experience since “shit got real”. Here is what that has generated. It’s a lot.

Commandment One: Get a Doctor
Start finding an EDS literate doctor, especially one that will listen to you. Do it. Do it now!

I know you don’t want to, but later you will thank you. Welcome to hEDS: Land of Doing What You Don’t Want to Do. Either you do it now, you do it later when things are worse from waiting, or you risk option three: being the person who never handles their medical issues and now complains about being stuck in a wheelchair. New issues will crop up over time - I’ve had surgery on my wrist and will soon have it on my elbow (Tommy John, motherfuckers!) - and either you take care of them or injuries begin to accrue. Another reason is some EDS variants, like cvEDS, can and will kill you. Getting checked out early means adding years to your life.

Look for private practices over big medical chains. If you have hEDS or any sort of hypermobility spectrum disorder (HSD), you’re going to need a doctor. I highly suggest contacting doctors by email or writing first to screen their HSD awareness. It’s not common and it’ll keep you from wasting your time/developing medical PTSD, a sadly common complaint of our people. I’m happy to help write a letter with you if you need assistance.

Commandment Two: Get a Diagnosis
Use it to learn about your condition. If you have EDS, odds are it’s hEDS, the least serious but one of the most painful variants. Common co-morbidities are postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS); I also have the latter.

Medical science has been dragging its feet on hEDS, so treatment is often a CYOA situation. I’ve found a few primary literature trends on HSD that have been useful.

First, we tend to have higher oxidative stress than the general population. I’ve found that hitting antioxidants HARD helps with pain a lot. It’s as easy as a dairy-free blueberry smoothie three to four times each week.

Second, we might have central sensitization issues on top of tissue fragility. Central sensitization at a very basic level means your brain gets better at feeling pain to the point where things that shouldn’t hurt much at all hurt instead quite a bit. What I’ve learned is, using the 0-10 pain scale where 0 is no pain, 1 is barely any pain, and 10 is so bad you’re pissing and shitting yourself on the floor, what feels like a 5 is more like a 3 in terms of actual damage. For me. Everyone is different.

Third, we still react positively to resistance training, with research showing adaptive changes in our tendons in response to a training regimen, which leads me to…

Commandment Three: Start Physical Therapy
Yes, it’ll hurt, but graded resistance exercises are key. As long as your joints aren’t fully dislocating (if you’re not sure, they’re not), it’ll help by increasing muscle strength and tone, which will help stabilize many of your joints. I started by getting a gym membership and starting with a number of exercises using the machines (better stability, no free weights) at the lowest setting for ten repetitions each. After two weeks, I’d bump the weight 2-5 pounds for smaller (upper body or lower body stabilizing) muscle groups and 5-10 pounds for larger (lower body) muscle groups. After four months of this, instead of bumping the weight, I’d increase repetitions 5 reps a week until I finally hit three sets of ten repetitions. DO NOT exceed the normal human range of motion during exercise. DO NOT increase your weight too quickly. Slow is better - the worst thing that happen from going too slow is it’ll take longer for you to progress, while the BEST thing that’ll happen from going to fast is you overdo it, strain some muscles, and are in a lot of pain for a bit. It gets worse from there. Go slow.

Anecdotal: judicious use of strength training reduced my joint hypermobility in my knees, elbows, and ankles. My ligaments tightened back up. Woot!

Commandment Four: Improve Your Mental Health
A lot of HSD folks are crazier than a sack of cats. It seems to be a trendy self-diagnosis for hypochondriacs, drama royalty, and various other hysterical personality types. I’ve known many with HSDs, both in-person and online, and the people with the worst eventual outcomes typically started with and maintained their poor mental health.

Colleagues have reported success with the Gupta Method, which I also used and found beneficial. Some of the rationale behind it is a bit shaky but the resulting message (basically, freaking out every time something feels wrong with your body is making you feel worse) was beneficial for people like me who do/did exactly that. I also use the Wim Hof method and mindfulness meditation to great success.

I also had a lot of childhood trauma I hadn’t processed. Seeing a counselor and working that out resulted in a reduction of all of my symptoms.

Commandment Five: Improve Your Physical Health
It’s exactly what you think: eat healthfully, lose excess weight, sleep enough, etc. If you have an HSD, you’ll want to reduce as much day-to-day strain on your joints as possible, so you should strive to be on the slim side. I’ve been on a ketogenic diet for the last year, running primarily on nuts and seeds, vegetables, and meats (arranged descending by average quantity), and it has MASSIVELY improved my EDS and MCAS symptoms.

That’s really the 3,000 meter overview. If you have questions, let me know!