I Have hEDS. Now What? Part 1
By the time someone gets an hEDS or HSD diagnosis, they've usually spent years trying to figure out what is going on with their body. The diagnosis answers that question, but it leaves the next one wide open: now what?
Over the past four years of working with people with hypermobility, hEDS, and HSD, I've gathered a lot of answers to that question. Some come from published evidence, some from conversations with other providers in the field, and some are more anecdotal, based on what I've seen and heard in practice. This post pulls them together as a starting point.
Seeing another specialist can be important. But more often, small changes at home make more of a difference than another scan, a new prescription, or a handful of supplements.
As most of you will already know, hEDS is a connective tissue condition that affects far more than the joints. There's no genetic test for it yet, so it's diagnosed clinically. HSD is the diagnosis for people with symptomatic hypermobility who don't meet the hEDS criteria. The day-to-day management for hEDS and HSD is largely the same. There's no cure and no single treatment for either, but many of the symptoms that come with them can improve.
This is the first of two posts. Part 1 covers where to start: finding someone to coordinate your care, reviewing your medications, physical therapy, everyday habits, pain, fatigue, and mental health. Part 2 covers the conditions that often come along with hEDS, like POTS, MCAS, and GI symptoms, plus the red flags that point to something beyond hEDS.
Start small.
Feeling better with hEDS takes time, usually more than anyone would like, and big overhauls tend to collapse the first time you have a bad week. Small changes stick.
Five to ten minutes of exercises a day is a great place to start for many people. Once that feels routine, add a little more, and then pick the next thing. The whole strategy is to add one small change and stick with it for an extended period of time before adding another.
Pick a point person
You'll probably end up with a long list of specialists. Without someone keeping track, care gets fragmented and recommendations start to contradict each other. A primary care provider who is curious and willing to learn is usually the best hub, even if they aren't an hEDS expert.
Keep your own records, including your diagnosis note, test results, a current medication list, and a one-page summary of your conditions, and bring them to every new appointment. Before each visit, rank your symptoms by how much they disrupt your life and start with the top one. Not every referral has to happen at once.
Review your medication list
By the time you get an hEDS diagnosis, you may have seen a long list of specialists, and each one may have added a prescription. Every medication has side effects, and some of what you're living with may come from your medications, not your hEDS.
A common pattern: a medication causes a side effect, the side effect gets treated with another medication, and the list keeps growing. It's called a prescribing cascade, and it can be difficult to undo.
Ask your primary care provider or a pharmacist for a full medication review. Bring everything: prescriptions, over-the-counter meds, and supplements. For each one, ask:
Why did I start this, and who prescribed it?
Is it still working? How would we know?
Is the reason I started it still relevant?
What side effects can it cause, and do I have any of them?
Does it interact with anything else I take?
Do the benefits still outweigh the side effects?
Don't stop anything on your own. Some medications need a slow taper, and stopping suddenly can be dangerous. Change one thing at a time so you can tell what actually helped.
Physical therapy
Yes, I know, we've all heard this. PT is the foundation of hEDS care, because your connective tissue doesn't hold your joints as firmly as it should and the muscles around them have to pick up the slack. The focus is on strengthening and stability rather than stretching.
A good hEDS PT program works on proprioception (your sense of where your joints are in space), balance, and posture. It teaches you to move in the middle of your range instead of locking your knees or hyperextending your elbows. It usually builds from the center out: core and trunk first, then shoulders, hips, knees, and ankles. Exercises start with your hand or foot fixed, like a wall push-up or a squat, before moving to exercises where the limb moves freely. Reps go up before weight does.
Keep the intensity moderate: if you can't hold a conversation, you may want to ease off. A flare after a session usually means the load went up too fast, not that exercise doesn't work for you. Avoid positions that cause instability, subluxations, or lingering pain.
Not every PT has worked with hypermobility, so ask before you book. How many hypermobile patients have you treated? Do you focus on stabilization or stretching? What do you do when someone flares? If the answers are vague, move on.
This may take months before you see true improvements, but don't give up. Ten minutes per day beats an hour once a week.
Everyday life
Pacing is one of the most useful skills you can learn, and one of the hardest to practice. Break tasks into shorter blocks, alternate harder tasks with easier ones, and stop before you hit your limit, not after. The boom-bust cycle (doing everything on a good day, then paying for it for three days) is one of the most common reasons people feel worse over time.
Use braces, splints, and taping selectively, for specific activities or flares. Worn all day every day, they can actually weaken the muscles PT is trying to build. Ring splints for fingers that bend backward, thumb and wrist braces, and ankle or knee supports are all fair game. Supportive shoes and orthotics help if your feet or ankles are part of the problem. Compression garments can help with joint awareness, not just POTS.
Small tools make a big difference: wide-grip pens and utensils, an ergonomic keyboard and mouse, jar openers, reachers. An occupational therapist can look at how you sit, work, lift, and sleep, and suggest changes that keep your joints supported instead of stretched to their limits all day.
Mobility aids like a cane, forearm crutches, a rollator, a wheelchair, or a scooter can help you conserve energy and keep doing the things you care about. Any support should be chosen for what you need to function, not handed out just because you have an hEDS diagnosis.
For exercise beyond PT, low-impact options work best: walking, swimming, water exercise, a recumbent bike, rowing, or Pilates with an instructor who understands hypermobility. The best one is the one you'll actually do. Keep moving in general, since long stretches of rest or immobilization usually make things worse, not better.
Pain
Pain in hEDS usually comes from more than one place: joints, muscles, nerves, headaches, or widespread pain. Each responds to different approaches, so it helps to work out with your care team which kind you're dealing with.
Non-medication tools come first, with PT and OT as the foundation. Heat helps muscle spasm, and cold helps a fresh injury or soreness after activity. Approach massage, myofascial work, and acupuncture with caution: they help some people, but done without care for hypermobile tissue, they can easily make things worse.
Over-the-counter pain relievers have a place, but NSAIDs affect platelets, so check with your doctor before using them regularly if you bruise or bleed easily. Long-term opioids carry serious risks, including dependence and addiction. They also slow the gut, which can make GI symptoms worse. If you have mast cell symptoms, both NSAIDs and opioids can trigger reactions.
For widespread pain that feels amplified (sometimes called central sensitization), jumping straight into strengthening can backfire. Settling things down first with pacing, gentle movement, and approaches like cognitive behavioral therapy or pain education usually works better. If pain still limits daily life, a physiatrist, a physician who specializes in physical medicine and rehabilitation (PM&R), can be a good fit. Multidisciplinary pain programs that combine PT, psychology, and medical management often help more than adding medication.
Fatigue
Fatigue in hEDS often has drivers you can work on. Before accepting exhaustion as just part of the deal, look at the usual suspects: untreated POTS, poor sleep, pain, deconditioning, medication side effects, and things like iron deficiency, anemia, thyroid problems, low vitamin D, or other nutritional deficiencies. Ask your doctor about basic labs.
Rebuild activity gradually instead of resting more. One exception: if you crash a day or more after exertion, talk to your doctor before ramping up. With that pattern, called post-exertional malaise, pushing through can make things worse, and staying within your energy limits usually works better than steadily building up. That means staying active, but below the level that triggers a crash.
If you snore loudly, someone has noticed you stop breathing at night, you wake up with headaches, or you're exhausted no matter how much you sleep, ask about a sleep apnea evaluation. If jaw or neck problems make a CPAP mask hard to tolerate, say so. Fit and setup can often be adjusted.
Mental health
Anxiety and depression are common in hEDS, and some of that comes from years of pain and being dismissed, which would wear anyone down. Some may be more directly connected to the condition, and research is ongoing.
A therapist who understands chronic pain or chronic illness can help with pain, fear of movement, stress, and adjusting to life with a chronic condition. That support should go alongside evaluation and treatment of your physical symptoms, not replace it. Pain psychology is a tool for living with a nervous system that's been on high alert for a long time.
Where to start
You don't have to do all of this at once. Pick one thing, maybe ten minutes of PT exercises or a conversation with your primary care provider about your medication list, and build from there.
Part 2 covers the conditions that often come along with hEDS, including POTS, MCAS, and GI symptoms, plus the red flags that point to something beyond hEDS.
This post is educational, not medical advice. Every case of hEDS is different. Talk to your doctors before changing your treatment, medications, diet, or exercise.
Learn more
New to this? Start with this guide to the types of Ehlers-Danlos syndromes or hEDS vs HSD post.
Questions? Feel free to reach out.
Education and resources
The Ehlers-Danlos Society: Information about hEDS, HSD, diagnostic criteria, and symptom management.
The Hypermobility Syndromes Association: Practical guidance for living with symptomatic joint hypermobility.
Norris Lab: Research updates on the biology and genetics of EDS and related hypermobility disorders.
ClinicalTrials.gov: Searchable registry of studies involving EDS, HSD, POTS, and related symptoms.
References
Chung, Tae Hwan, and Satish R. Raj. "Postural Orthostatic Tachycardia Syndrome (POTS): A Review." JAMA, 2026. doi:10.1001/jama.2026.14809.
Hakim, Alan. "Hypermobile Ehlers-Danlos Syndrome." GeneReviews, University of Washington, Seattle, updated 2024.
Malfait, Fransiska, et al. "The 2017 International Classification of the Ehlers-Danlos Syndromes." American Journal of Medical Genetics Part C, vol. 175, no. 1, 2017, pp. 8-26.
Reychler, Gregory, et al. "Physical Therapy Treatment of Hypermobile Ehlers-Danlos Syndrome: A Systematic Review." American Journal of Medical Genetics Part A, vol. 185, no. 10, 2021, pp. 2986-2994.
Yew, Kenneth S., Kara A. Kamps-Schmitt, and Robyn Borge. "Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders." American Family Physician, vol. 103, no. 8, 2021, pp. 481-492.
