Myths about hypermobility spectrum disorder and hypermobile Ehlers Danlos syndrome #shorts

These 3 myths are particularly harmful and limiting and can lead to people feeling helpless, hopeless, trapped, fearful, depressed, and anxious. Not exactly what we want, right?!

hEDS/HSD is not progressive, medically speaking. This can be a confusing for some. I understand why some people feel this doesn’t align with their lived experience. It’s important to differentiate between symptoms and comorbid conditions which can flare up, or get worse versus a medical condition that progressively worsens over time. These two things are not the same.

Lifting weights and strength training is wildly helpful for hypermobile joints. Now, I will add that it absolutely depends on HOW it’s being done and it’s essential that the starting point matches the ability level of the individual appropriately. But understand that with the proper instruction and guidance almost everyone with hypermobility will benefit from gradually and consistently strength training. Our muscles provide natural and essential support to our hypermobile joints. This type of exercise can help with everything from pain to subluxations and dislocations to sleep, stress, and dysautonomia. I’m so tired of people being told that lifting is too dangerous for them. Jumping into a crossfit class without building up to it could be dangerous, yes. But working with someone who understands hypermobility and gaining strength in a safe way is so essential.

There’s no cure for hEDS/HSD. This is correct. It’s not even fully understood why or how these conditions are occurring in some people. But that does NOT mean there’s nothing you can do. You can treat the symptoms without having a cure and this can result in a massive improvement in how a person feels and functions. Some interventions may be medical and done under the supervision of your medical team and some are lifestyle modifications you can make yourself.

A lot of negative feelings could be put to rest by understanding how much power we have and how much ability there is to improve.

#hypermobility #hypermobile #heds #eds #hsd #hypermobiltyspectrumdisorder #hypermobileehlersdanlos #hypermobilityspectrum #hypermobilejoints #pots #dysautonomia #mcas

[cosmicredfield]

It is progressive. And it says that everywhere lol. Its just a matter of how it affects a person due to severity or the type just like a cancer hss many types and severities, but its still progressive. Im completely disabled at 26 now by hEDS. So are various people i know.

[rachelderrenkamp]

It is progressive. I use to be an athlete and had to give that up and my nursing career. People have different types and severities. I'm hyper mobile and it's awful. I'm now disabled at 44. Only listen to your EDS specialist. I was going to follow these ppl until I came across this video with misinformation. Sorry guys!

[nanetteisontheinternet]

As someone with hEDS, while all of this is *technically* true a lot of it is misleading. hEDS is not classified as a progressive disease sure but for many people it will get worse with age. “You shouldn’t lift weights” again technically saying this is a myth is mostly right but for many patients lifting certain weights or doing certain exercises will trigger flare ups or dislocate/sublux joints. Weight training is certainly beneficial for many but can be very dangerous for others when not under strict guidance of a medical professional/physical therapist. By saying “you shouldn’t lift weights” without more context this could lead people with hEDS to think it’s okay to just jump into weight training without guidance or building up to things. And saying “there’s no cure, so nothing you can do about it” is a myth is very misleading because the first part is absolutely true (with the current medical technology we have now), there is no cure. Yes there are treatments but you can’t actually do anything to change the fact that you have EDS and I think it could be easily misunderstood to be otherwise. Some rephrasing like “hEDS is a 100% progressive disease” is a myth and “there’s no treatment” is a myth would really be nice for clarity is all I’m saying.

[kristimorgan]

So it’s NOT progressive? I’m so confused. of my doctors, specialists, nurses, and therapists agree that it IS indeed progressive. All of the literature says it’s progressive. What are your sources that hEDS being progressive is a myth/lie?

[hele]

But what will help me with joint instability and dislocations? Is exercise not the answer?

[puddincakes]

Ugh I found out a few months ago that I have this, and I used to be an athlete, but now I am super overweight. Every time I have tried to get a trainer and get back into working out again, it’s been a struggle between pain and having to stop due to getting sick and struggling to reschedule. Now I’m not sure if a personal trainer would be knowledgeable about hypermobility enough to help me. I have a PT that specializes in it in the meantime, but they’re having me go super slow, and my doctor told me to do cardio like walking and swimming. Don’t think that rate would help me lose much weight haha. So I feel like a restrictive diet is practically my only option, but not sustainable either.

[GardarionWalker]

I have MFS and EDS, is there a possible cure for this.

[thatoneramdomautistic]

As a hypermobile teen (not sure about hEDS), I've given up soccer due to CONSTANT injuries. I can't fucking walk without spraining my ankle.

[alexrivera]

Ok so what if you don't want to look like a steroid plum am skinny and am verry happy like this I don't want or need any bulky muscles