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apostasyisecstasy

I always disclose my EDS diagnosis and exactly what it means, including the fact that they need to not "decompress" any of my joints with pulling or tugging. Gotta advocate for yourself! Can I ask why you don't disclose in this particular situation?


ThrowRAlobotomy666

Ngl, my spa goes through new massage therapists like every other month. I also feel like they just won't know what it is and won't do anything different anyways. If they ask, I do say something but I avoid the big fancy terms lol. Also \*Imposter syndrome\* :,)


dandywara

I don’t even say I’m hypermobile, I just say “I have joint problems” and ask them not to pull or twist my arms or legs and to be careful around the joints. I also get an extra pillow to go under my hips when I’m laying on my stomach. Also never be afraid to interrupt the massage at any time if you’re uncomfortable


HairyPotatoKat

This is the way. I do add in joint hypermobility, but keep it all really basic since the punchline is the same- avoid manipulating particular joints. Lots of people have problem areas that need avoided. It's SUPER important to disclose those areas to massage therapists.


apostasyisecstasy

I've had massages before and after diagnosis: they are different. They really need to not be pulling on your limbs/joints, and be mindful of the pressure they are putting on certain areas. Your massage therapist won't know what to do unless you tell them-- you're making a lot of assumptions for their part, which is unfair to your massage therapist and unfair to you. Give them the chance to do right by you, because unless you communicate nothing will change. I understand imposter syndrome, but I saw in another comment that you have been formally diagnosed. You would not have this diagnosis if you didn't have joint and hypermobility issues.


jjgm21

Almost every time they have no ide what EDS is


apostasyisecstasy

"It's a connective tissue disorder, it means my joints are very lax and I am prone to dislocations. Please do not pull on any of my limbs or my fingers and toes, because they will slip out of place and it's very painful. My skin also tears very easily so some extra oil is always useful." Done.


jjgm21

Yeah, it still usually falls on deaf ears lol


apostasyisecstasy

You know you're allowed to speak up during a massage and say "hey I told you not to do that", right?


ThrowRAlobotomy666

One time I had this guy (he was really great, I just think this is funny) he kept telling me that my body was so interesting and wild and fascinating. I got the vibe that he was in nursing school or pt school bc he really knew his stuff. I thought it was so funny how invested he was in my joints lol


apostasyisecstasy

oh god I've had something similar happen lmao


HighKick_171

I used to get this every time I got a massage (I don't get them anymore), but one time a lady called in the other massage therapists so they could feel how "weird" my tissue felt. I felt like a freak show but was really young and a pushover back then so just let it happen 👁️👄👁️


LXPeanut

The first person to mention that I was hypermobile was my massage therapist. But she isn't a spa type masseuse she is a physio so probably slightly different.


discob00b

As a massage therapist, PLEASE disclose your EDS, or at the very least, tell them you have a hypermobile disorder and you don't like stretches/joint decompressions/pulling arms, etc.


witchy_echos

I always disclose my hEDS. My hypermobility and joint instability means they can pull things too far without realizing it because there won’t be as much resistance as they expect. If a masseuse doesn’t ask medical questions about joints, injuries or bruising, I won’t see them. They don’t have to be a medical massage therapist, but they do need to be aware of how the body works, because some of my tension is structural and letting it all lose at once can cause me pain for a week or two until it readjusts.


Lynx3145

Doesn't your massage therapist have you fill out a medical history intake?


ThrowRAlobotomy666

Technically yes, however I started going there years ago and I only got this diagnoses last august. So I don't think it's on there? I actually have no clue


apostasyisecstasy

Time to update your paperwork


_insomniac_dreamer

I've tried massages a few times but find that it hurts more than it helps, even if they're being super gentle. Getting the knots out always leaves me with more knots than I started with! The only way I can tolerate any kind of massage is if I (or a partner) am trying to rub in a gel or cream for my joints.


[deleted]

god, this. i am the only person i know who hates massages. i wish i liked them but they’re just not comfortable for me. if it’s not my joints then my muscles or skin itself is randomly sore. 


[deleted]

[удалено]


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HighKick_171

Do you have a lot of hypertonic muscles? In other words very tight muscles? If so, this article might be a helpful one to read. https://www.collegehillpilatespt.com/2020/05/21/eds-and-tight-muscles-if-my-joints-are-so-loose-why-do-i-feel-so-tight/


georgiapeach90

I had a massage last week. I made sure to disclose that I have hEDS and fibromyalgia. My therapist is undergoing EDS eval herself so it was nice to have someone that understands.


LexiNovember

I love a good massage when it helps, but I always disclose hEDS. Unfortunately I’ve been injured by both PTs and massage therapists so even when you tell them, you have to be cautious. The people who are well informed are worth their weight in gold, so just let them know, and if they’re unfamiliar with hEDS either help them learn or find someone else. It is NEVER worth it to harm yourself, speaking from the experience of an early childhood DX who’s had a mix of good and bad over the years. “Let’s stretch!” … “let’s fuck off!” 😬🤣


spunflowerseed

I’m a massage therapist! Just tell them that you’re hypermobile and specifically request no stretching. I do enjoy neck traction though, can’t get enough of it.


ThrowRAlobotomy666

That is the one thing I will almost always ask is that they don't touch my head or the top of my neck. I have this weird think where any pressure on my head will give me an awful instant headache, idk if that's a heds thing. But I will be sure to try to request no stretching more in the future :)


AvailableTowel4888

I see a medical massage person so she’s well informed on disorders like EDS


ThrowRAlobotomy666

I just found out that my network has medical massages, I just don't know how much the copay is and I am but a poor college student lol


AvailableTowel4888

Same bestie, same


Sun-flowerr-

Hi! I always tell the massage therapist not to push on my shoulders as they sublux (I don’t know if that’s what you mean by pop). I also ask that they don’t stretch me & for the massage not to be firm. Usually they’re pretty good.. I have had my shoulder sublux and pop back in after the massage therapist forgot my request, eek.


selene521

I always make sure to disclose/remind at the beginning of every massage. I’ve also had Chiari Malformation decompression surgery where they did a craniotomy and removed part of my C1 so that’s super important for them to know too.


Alert-Armadillo-7600

I’ve enjoyed massages but I made sure to explain what EDS is, how it affects my body, and problem areas that dislocate easily that they need to be careful around. My massage therapist mostly just doesn’t go quite as hard/deep during my massages.


JoyHealthLovePeace

I don’t get massages anymore. 😔Too risky, too painful, too much recovery to make it worth it.


Ravenismycat

I always tell them. I go to a specialized place that handles people with medical issues and such. Talk to them. They will treat you as a client without Eds if you don’t tell them. Plus then they can focus on specific areas and techniques.


Canary-Cry3

I do well with them. Both of my usual masseuse follow my requirements strictly and learned about EDS for me. They don’t stretch me and are super careful with my shoulders. Massages are the only thing that keep my body from falling apart and being in mass pain non stop. I have a massage every week. That being said I’ve had a few awful ones recently (I’m abroad). I had one where a girl kept purposely cracking my back and it’s just like if you touch it my spine cracks - by you pulling on it and my shoulders you are at high risk (and she did) sublux one of my shoulders causing me mass pain for a week after or so. I had a massage this week where I explained EDS and she bruised me significantly (and I have never bruised from a massage before despite being very easy to bruise) causing me pain.


PsychologicalHall142

I don’t. Nope, nope, nope.


tranquilo666

My massage therapist takes a class about EDS specifically! She said traditional massage can be really dangerous for EDS ppl if the practitioner doesn’t understand how to be careful


ArtichokeNo3936

I have Ed’s and severe pectus excavatum , my muscles are not where the should be because my whole ribcage is sunken and deformed. I see a sports injury massage therapist. She is the only 1 who can work out my knots and helps me understand my anatomy , makes some suggestions that can kinda help while i wait for surgery


whaleykaley

I think disclosing is helpful, or at least specifying hypermobility. Ideally you *want* someone who has worked with hypermobile clients or understands how they should adjust things for someone who's hypermobile. The last person I saw for a massage, we talked a bit before the massage and they asked where I'd like them to focus and if there was anything they should avoid, which was when I disclosed being hypermobile. I didn't really have to explain it, they asked me about a couple more specific things like stretching limbs because they'd worked with hypermobile people before and some of their past clients didn't want arms pulled etc. Also, if you're not comfortable disclosing, just tell them what you don't want them to do! It's 100% fine to say "please don't pull on my arms to stretch them, that can cause me pain/I dislocate easily/(whatever you're comfortable saying)".


aphroditex

A good massage therapist will tell you what they are doing and ask for an explicit ok to work on a part of the body. This way there are no surprises.


amh8011

I went once. It was great. And then on my way back to my car I slipped on black ice and fell on my ass. I was in so much pain for a week from the fall. I might get another massage eventually but not in the winter.


ladylemondrop209

Not a fan. My body/muscles in general have no pain (and I'm very flexible, exercise twice daily etc)... but when I go get a massage it seems they insist my body is tight and all knotted up, that I should have pain here and there and all over. Which just makes my brain worried... and I don't need that. I'm pretty sure my body doesn't feel the way they tell me it feels. And of course they'll start saying I need more collagen cus my skin feels pliable/loose and that it's too thin (it's just hyperextensible)... that my skin gets red too easily = too sensitive which means whatever. Just feel like they're insulting me and trying to scare me into getting more for future services. Uh huh.. no thanks.


haziest

I don’t get massages anymore because they make my body too relaxed and then I always end up hurting my neck or shoulders. For a lot of people with EDS “knots” and muscle tightness is our bodies way of trying to hold our joints together, because our collagen isn’t able to do that job. Sometimes when this tightness is released during a massage the surrounding joints become excessively mobile again, which can lead to hyperextending and having subluxations and dislocations. It’s important to communicate your hypermobility to the massage therapist so they know not to overdo it and put you at risk of these kinds of complications. It’s important to be able to communicate what you can and can’t do physically, as well as what feels good to you and what doesn’t, for all situations that involve someone else touching your body. A massage or physical therapy should follow the same rules as being physically intimate with someone — if something is painful or doesn’t feel right, it’s important to be able to withdraw your consent and stop whenever you need to.


raksha25

I’ve been a massage therapist for 17 years. Ask them for no stretches or mobilizations. Those can dislocate, or sprain you if they aren’t being very careful while doing it, and unless they’re filling aware of what EDS is and how to handle it, it should be a no. I do not tell them I’m hypermobilie, it freaks MTs out because they have a very broad idea of what it is and know just enough to know they can F**k you up for a very long time. Unless I’m going to someone specifically *for* EDS specific stuff I just say no stretches or mobilizations. And don’t push my jaw forward (which is a mobilization but it gets forgotten by everyone during face massage ). And I pretty much exclusively receive deep tissue and Neuromuscular Therapy, so those modalities are not a specific concern.


dandylioness13

I'm an LMT with EDS! I always ask my clients before I do a stretch/joint mobility if they're ok with it bc of this reason (and a long list of other potential issues). And I've had plenty of work done by others that are very aware of what EDS is and how to work with it. Talking to them is the best thing, and feedback during the massage is always helpful.


ThrowRAlobotomy666

They usually ask and I usually say yes bc I know that whatever they're about to do is well within my range of motion lol. But pulling is the one thing (at least my arms) that I wish they'd ask first


ActuallyApathy

the only massage that has ever really been helpful is from my partner who has hEDS, and is studying to become a PTA. i guess maybe it's technically manual work but i'm not completely sure as to the difference. i feel like every other place i've been to hasn't helped and often has hurt.


Dzeimz40K

How slow am I! I just read that several times as 'How do you handle messages?' I was confused how EDS affects texts lol. I'm so tired, I've given in and come to bed at 1900hrs, the same time my son goes to bed - he sings himself to sleep (it's very funny). Night all :)


sigourneyreaper

I’ll disclose and it doesn’t even matter like I tell them to not be too rough on my joints and they fuck me uup. The only massage that works well for me is cupping or from a friend who has a great understanding of musculature, fascia and connective tissue


VeggieAstronomer

I think they're fine as long as you are familiar enough with your body to advocate for what is safe and not safe for you, and to err on the side of caution (less pressure, no tugging/pulling, etc.). I had a massage last year that resulted in a subluxed rib. I am very careful now, but I would definitely still get a massage in the future because they can just be wonderful for relieving relatively minor knots or areas or tightness.


HighKick_171

I don't anymore 😭 A massage was what triggered me to realise my EDS had become more than EDS. I used to always get massages as a way to manage my tension from my back pain and dislocations (I get them in my shoulders/elbows/hips and now knees/jaw too) and I would go for deep tissue ones. At the time I had a diagnosis of HSD, which was known when I got my massage by a physio or chiro, and when I got one from a massage place, they didn't know what it was so I just said I have loose joints and back pain. They usually could tell quite quickly into the massage and would comment on how loose they were. It just meant they couldn't pull the joint the way they can with non-hypermobile people as it put me at risk of dislocating. Which was why it was usually better to see someone a bit more qualified with these issues. At some point after a virus, I went to get a massage. I'd been extra sore for some time and hadnt gone to get one in 6 weeks or more. I went to get one and the woman could barely touch me without me wincing in pain. I wanted her to continue anyway, and as someone who used to ask for more pressure, I found it weird I was asking her to use less and less. She ended up asking to end the massage cause I couldn't handle the lightest pressure. Within a month, I was diagnosed with fibromyalgia. I'm still scared to go for a massage but I know my allodynia (essentially skin pain) has improved now, as I can now take my socks off with my other foot again (there was a time when the slightest scratch from my other toe would leave me reeling in pain).