Do you have hEDS

See a doctor.

Seriously. They can help. Not all of them, and they can be a real barrier to getting the help you need. And it takes time to work through them.

I had one asshole actually tell me “well I guess you’re gonna have to learn to live with it”. I’m lucky to not be in jail, I came very close to knocking that doctor’s head off.

Now I have a moderately sympathetic doc, I’ve learned how he views things, and the way I have to present information so he can justify the treatments and meds he prescribes.

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!

I have hEDS. Moist heat pads are my go to after injury. That sounds gross but I feel like it helps the heat penetrate. A hugely helpful thing was a script for a muscle relaxer though. I get muscle spasms around the joints that slip the most (probably my body trying to hold everything together lol). My friend who also has EDS swears by a passionflower/cbd gummy for muscle relaxing, so maybe try that until you can get a prescription.

Physical therapy helps, too, and you can probably find one who will do video appointments.

Canes are pretty cheap, and they make collapsible ones. My hip and knee heal a lot faster when I use a cane after a dislocation. I don’t really care for braces, but my friend really loves them, so ymmv. I much prefer using kt tape for stabilization. There’s lots of guides on placement online. Just make sure you keep some oil on hand for when you’re ready to remove the tape. Hypermobilty often comes with very sensitive skin that tears easily

Please see a doctor. You shouldn’t have to live in constant pain. A doctor should be able to get you on a pain management plan and help you live your life. They may also be able to help with the anxiety.

All the online stuff says that the most effective treatment for hypermobility consistent low-impact joint exercises and minimal excess body weight.

This is amazing, I genuinely teared up. Thank you so much, everyone.

A bit of context: I’m AuDHD and non binary and sadly I already have so much medical PTSD, both from physical doctors and from psychiatrists and mental health professionals. Some didn’t listen, some attributed everything to anxiety, from some I suffered actual conversion therapy. I’ve been told so many times by so many doctors that my pain was not real and it was all in my head. I had to diagnose myself with AuDHD because no one ever recognized it, and I found a psychotherapist who has hEDS and suggested I might be hypermobile. I risked ending up in a mental health hospital more than once for stuff I did not have because I wasn’t diagnosed with Autism and ADHD. I also have extreme social anxiety and if I do go to a doctor, I just can’t remember anything about the stuff they ask and afterwards I forget what they tell me, so it ends up being completely useless.

That said, I appreciate all of the answers so much, and I think I will try and look for a doctor who isn’t an idiot and at least knows what transgender means, but first I need to understand more about the syndromes and which ones I have so I don’t get screwed, so if you have resources (even more technical ones) I’d love to look at them.

Thank you thank you thank you. I feel less alone.

Boswellia+Curcuma or (pharmaceutical grade) lavender essential oil, collagen+hyaluronic acid, mineral supplements all help me personally.

In general I would recommend getting extensive blood work done to see if you have any nutrient deficiencies or other easily detectable abnormalities. That is a low-effort objective first to help relieve a lot of issues, that doesn’t require you to visit a million doctors.

Even if you live as healthily as can be, it’s possible you can’t properly uptake or process some nutrients, for whatever reason. So it’s alway good to check it out.

For example a variation of the MTHFR gene can lead to abnormal folate levels and cause hypermobility. But it could also be due one of many other causes, many of which you could sus out with blood work.

Most people are deficient in something or another anyway, like Vit D, Bs, Iodine, Minerals, etc. So it never hurts to check it out. Even if it doesn’t help you with this issue, it might help you in other ways.