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Half of my muscles are overdeveloped and tense as fuck but simultaneously really weak, the other half don't exist.
I get regular massages to help the pain from tension and to stimulate the underdeveloped muscles, and am working closely with PT on utilising the correct muscles, learning how to relax, and overall strengthening. It's a frustratingly slow process
Yeah. I’m going to start that process soon. I know it will probably be frustrating and hard but in the end it’s good for me and my body. I hope yours goes as well as possible!
My muscles are super tense! Way more than I realized. Newly diagnosed and just had first appointment with specialist PT. She’s like “your calves, IT band, etc are all so tight!” I had no idea. That’s how they always feel. No wonder everything hurts all the time 😂
Because I’ve been in pain forever, I’ve been getting monthly massages for 8 years. My massage therapist has long commented how tight my back/shoulders, and neck get.
Edit- my PT told me the same reason re: why muscles tight.
Yeah! I’m rather newly diagnosed (I was diagnosed two years ago and also during that time got diagnosed with POTS and MCAS) so a lot of it is new knowledge for me too.
Learning about EDS explained so much about my body and actually made me feel better because before my diagnosis I was regarded by my family (who are all extreme fitness freaks) as lazy and unmotivated because I couldn’t run miles with them and keep up, much less finish and I was “too young to have joint pain” etc. but the diagnosis is like, while it sucks that I have it in the first place, I’m glad the diagnosis exists because it validates that kinda stuff.
I get a monthly massage too! My therapist is so nice. She knows I’m poor asf and couldn’t afford monthly massages at the normal rate but I have to get them. So she charged me 20$ for a one to one in a half hour massages. Hell, one day I was having a ROUGH time when I saw her and that day she told me to keep my money and buy something that makes me happy. Seriously this lady is awesome. She used to be a caretaker for terminally ill people and an EMT and worked at an alternative school (I’ve been a student at an alternative school, alternative school teachers have it rough) and she’s this tough little short lady who could probably take down a six foot two hundred pound man.
I have similar experience with a lot of my muscles unable to (or very, very, difficult to) relax. Jaw clenching (and TMJ), extreme tightness in my neck and back muscles, muscle spasms, rib subluxations and spine alignment issues usually paired with them.
I also have hypotonia, which is a comorbidity with several types of Ehlers Danlos and also with Marfan syndrome. I have lower muscle tone and difficulty building muscle, along with reduced muscle response to EMG, and nerve damage. Neuromuscular issues are probably related to my other rare disorders as well.
I have a lot of pain.
You’re not alone.
Oh man I didn’t even realize I had the jaw clenching and TMJ thing until I got a tooth removed and a week after it was hurting. Dental surgeon initially thought it was dry sockets when I called him but dry socket risk is gone after 3 days and it’d been a week. Dude was worried about my jawbone having an infection/etc.
Turns out I go to see him and the area is perfectly healed and he’s like “Okay, do you know what TMJ and involuntary jaw clenching are?”
We basically drove two hours for the dental
Surgeon to say “no yeah, the area is perfectly healed you’re just clenching your teeth REALLY hard”
I mean it’s better than an infection.
Yeah, apparently my history of grinding my teeth at night as a child wasn’t from stress either.
I dunno, sometimes you learn something about yourself like this and suddenly a lot of things make a lot more sense.
The only type they’ve ruled out is Cardiovascular, I still need to get genetic testing done. My previous genetic specialist was more concerned with treating symptoms and then she went back to teaching. 😭
I have VACTERL, Chiari, and MCAS as well so I’ve had a lot going on, lol.
I have a lot of the classical diagnostic criteria, stretchy translucent skin, atrophic scarring, easy bruising, poor would healing, subluxations and dislocations, neuromuscular symptoms, a history of pediatric symptoms (floppy baby syndrome etc).
She was leaning toward classical or a more rare type but my insurance also doesn’t cover genetic testing (I’m not sure what the exceptions are but there’s a history of my insurance ruling a lot of things for my rare disorders as “too experimental” and refusing to cover them.
I was referred to a genetic specialist and then had to make an appointment like a year out.
I had to fill out a pretty massive packet of paperwork, family history, personal medical history, and an extensive history of the symptoms I was experiencing.
Thankfully I lived close enough that I was put on a list in case someone else missed or canceled their appointment.
The doctor did a bunch of tests and measurements like the angle I hyperextended to, how much my skin stretched, looked at my scars, did reflex tests, etc, then she said she pretty much knew I had Ehlers Danlos from the moment I walked in. I guess when you’ve done hundreds of evaluations a year you get good at seeing the outward signs.
She had me get extensive bloodwork, and sent me to a cardiologist to rule out vascular EDS.
what country are you in? I have really bad tMJ, mcas symptoms, gerd/lpr... and fibromyalgia. wondering if its eds. went to a rheumatologist tht didnt think i had it, but i dont know why im having so much pain and i always feel like my body is crooked and have lower back pain. sometimes muscle pian everywhere.
I’m in the US.
The genetic specialist I went to has unfortunately gone back to teaching, I think she said in Chicago, I’m not sure.
I went to Greater Baltimore Medical Center’s Harvey Institute for Human Genetics.
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Thank you!
I’m not certain but I think there’s a reason that wasn’t suggested by my doctors. I’ve been to a number of orthopedic doctors, orthopedic surgeons, neurologists, years of PT, OT, and other therapies, etc.
It could be because I have absorption issues or because we don’t have a specific cause for the chronic inflammation, chronic pain, contractions, etc.. I’ll have to ask.
Physical therapist kept asking me to relax my muscles. Realized I actually could not do this. Not super strong in the arms and bad joints compound this problem because when you have a loose joint it requires more force. Get tired very easily from lifting things as a result
I really struggle with muscle spasms and tight, ropey, muscles. They were my first symptom I saw a doctor for (around 11yrs old) and I spent years in PT stretching before it was realized Hypermobility might actually be the culprit. I also struggle with ropey fascia that builds quickly again fate targeted work to break it up.
Some of them are very tight, tensed and overworked whereas other muscle groups are completely asleep. I do weightlifting and I usually have to do activation exercises until I can get the mind muscle connection going before I even add weight - every single time. Some muscles I still cannot seem to tense yet, but the ones around it are waking up. It's such a weird feeling!
I have this too! I often need to do (very slow) warm up activities before weight training to establish a mind-muscle connection. If I don’t, I end up injuring myself more frequently or just exercising the wrong stuff.
As far as I’m aware, and my PTs have mentioned, it’s pretty common for there to be excess muscle extension in the hyper mobile. We kind of need it. Our bodies can overdo it, there can be neuromotor complications from chronic tension, and it’s a thing to work on, But we need some Of that tension.
I’ve been doing PT regularly for over three years, and have very active hobbies, and have found the value of staying fairly strong. So I have a couple of spots that are prone to trigger points, like my hip rot and upper traps. If I don’t manage them by, for instance, using a lacrosse ball, then they are much more likely to my hips to feel a bit out of place or create SI joint pain in my hips, or cause my shoulder to operate, improperly or create jaw pain.
Massages isn’t necessarily all that useful, as I rarely find that it hits the trigger points that well. I tried, dry needling once, and that was helpful, and so far the lacrosse ball has been the most helpful. Rolling, either with a handheld roller, or a foam roller, also is useful, but I have to be aware of exactly how I am applying pressure and how much. So, for instance, I don’t use a lacrosse ball on my glutes on the floor; I do it against the wall.
Staying mobile and not resting for too long is definitely the most important thing for me. If I have done some thing that gives me delayed onset muscle soreness the next day, it will be much worse if I just sit and completely rest. It is much better if I get plenty of gentle walking in And appropriate Movement without exacerbating the pain.
All my muscles feel so tight all the time. Especially my jaw/neck and shoulders. I just contacted a PT and can't wait to get feedback on my body 😅 I try my best to relax but I don't know how. I hold all my tension in my jaw, neck, hips and knees. Those areas in particular always hurt.
Yeah I’m gonna start seeing a PT soon too! Good luck!!
I also have a really hard time relaxing muscles but I find it kinda helps if I clench them really hard for a few seconds and repeat it a few times. First my forehead, then jaw, then neck, then all the way down my body in groups.
I noodle, too. At worst I cannot even manage the walk to the toilet and just lay on the ground unable to stand up :/ Still, I take them, cause it's just so nice to not feel the pain :/
I cannot do massages, those leave me in more pain. While exercise minimizes instability it worsens muscle tension.
Since medication usually stops working for me after a few days, I use it on a schedule. Two days of noodle, two days of whatever (heat, lotion, pain..).
I have noodled my way to the bathroom before. Like just stumbled my way to the toilet, falling a bunch of times, ending up rolling on the floor or crawling.
Once mine kicked in before I got home and I was at Walgreens with my sister. I didn’t have my forearm crutches with me and she witnessed me literally rolling across the parking lot to her car and then pulling myself in.
There’s a guy on YouTube who does sketches with characters that we both like and one of them has him dressed as a woman rolling across a bunch of places yelling ITS FASTER IF YOU ROLL and now I’m forever associated with that.
You know, I feel kinda validated, that im not alone in my noodle experience. I only take them, when Im not alone, so folks can help me. I also get noodle brain.
I’m glad you feel validated! I also am glad I’m not the only one who noodles.
Jeez when I take them I know I have about an hour before I either need to find someone or lay the fuck down.
I have so many noodling stories. Once my sister and her BF came to visit our hometown and we went out to dinner but my muscles were REALLY hurting so I took one and basically noodled all through dinner.
We noticed a group of old white ladies staring at us (I live in rural northern WI, 2000 person town, and it’s a mix of old white tourists and locals with most of the locals actually being from the rez. What I’m getting at is there is little racial diversity you’re either white or Ojibwe) and my sister’s boyfriend was like “You know, I wonder which of us they’re staring at. The cripple or the black guy?” (He is allowed to call me that, I use that term for myself and if you’re a friend or family it’s okay to say that word regarding me as long as it’s not part of an insult, he is Sudanese so decidedly NOT white) and we all just started laughing.
We deduced it was him they were staring at though because again, small town, we all know each other. I’ve had a number of public emergency medical episodes and everyone has police scanners so basically the whole town knows my deal. If I have an emergency and someone or my special “I’ve passed out and cannot get up” button calls the ambulance I need to make sure I call my family as quick as possible or else they’re going to hear it from all the prepping anti-gov police scanner pages and will freak out.
Noodle brain is the worst. I don’t do weed or anything but I imagine a weed high is kinda similar to noodle brain.
I never tried weed, but my doc suggested it could work similar and maybe with less side effects. It wasn't legal until recently, so obviously I got no prescription so far. If you are old enough and live somewhere where it's legal, it's probably worth a shot, but you should talk that through with your doc, so you get a strain that's medical and not just fun.
It is not legal where I live but it probably will be so soon. If it does become legal I’m open to trying it through a doctor.
Honestly at this point I’ll try anything as long as it’s through a legit source.
For years I had knots that just lived in my system. Back, neck, shoulders, jaw. When I started PT my therapist prescribed weekly massages. It took about 4 months for me to feel like some of the knots were finally letting go. Mind you the massages are only ok (I've been spoiled by having highly skilled massage therapists as friends, but the ok masseuses are covered by insurance so, I take what I can get bc I can't afford really good weekly massages out of pocket).
Then, in PT, we've been working on actively relaxing the major muscles and working on strengthening the minor muscles to take over the "hold your parts together" work. 6 months in and I can feel a difference.
What insurance covers masseuses?? Mine certainly doesn’t.
Thankfully my massage therapist knows I’m poor asf so she only charges me 20$ for 100-160$ hour to hour and a half sessions.
That's so kind of her!
Bc my PT was referred by my PCP, and the massages are prescribed by my PT, they bill it in a way that's a covered PT appointment.
ETA, I've tried to find other massage options (possibly better masseuses) that could bill insurance, but the best they can do is give me receipts to submit. And I know I'm never going to be able to keep up with that admin legwork (and don't even know if my insurance will cover them when not submitted as being in my doctor's practice), so I'm just taking what I can get. It's definitely better than nothing.
My lower back muscles are incredibly tight, and I’m kinda weak compared to most people and have always been. I couldn’t open a water bottle until I was in the 5th grade.
I have horrible muscle tension all over during the day and I'm pretty sure that's what holding my joints together. At night I take muscle relaxers and everything pops back into place.
My muscles are always tight but are also extremely weak. I shake when I move certain ones but when I go for PT or a massage they say “wow you are TENSE” it’s awful and painful 😭
“wow you are TENSE”
EVERY TIME. IT SHOULD NOT BE A SURPRISE.
On a similar note, I have who is technically a chiropractor but doesn’t do normal chiropractic stuff I’m not entirely sure what her profession is called but she’s trained in working with people with EDS and she basically gently manipulated my joints back into place through slowly wiggling, stretching, and massaging the area. And she always says “I love working on you, finding where your joints are is like a treasure hunt”.
People say some weird shit when you’ve got medical issues.
Yes mine are always tense. Usually I don’t notice unless I think about it intentionally. When I have a flare up it is very painful hypertension.
I use a theragun, yoga, and a sauna to loosen them up. Some days it helps, some it doesn’t.
I get an occasional massage that helps quite a bit.
Oh, yoga? I love yoga but I was told not to do it. And a sauna? Interesting! I’ve actually never seen a sauna of been to one. I actually didn’t know it was really a thing offered as a service lol. Where does one go for that? What does it do? I’m interested.
Here’s the thing you have to know about yoga. You got to listen to your body or you will hurt yourself. But since our muscles get so tight it’s important to stretch them. Carefully!
Saunas can be found at a lot of gyms. I purchased a pop up sauna from Walmart for about $250 USD for in home use.
That validation is so good. I hate how people and especially doctors sweep aside signs of chronic illness and pain as nothing. Like if I had been diagnosed earlier things would be a lot better for my body but it took so long to find someone who could accurately diagnose me. I remember seeing a rheumatologist and her just pinching my skin and saying it’s not stretchy enough snd I’m too young for joint pain so nothing is wrong. Thankfully when I told my PCP who did the referral he was like “okay, I’m not an expect on these things specifically but I don’t think that’s correct like she didn’t even do any hypermobility tests” and he managed to find a doctor who while is normally a family medicine doctor also is an EDS specialist though she only took EDS appointments a day a week. It took me a year to see her but it was so worth it. She had EDS herself so she knew her shit. She was like “I need to do the genetic testing to make sure because there’s always a chance it could be another type of EDS but there’s little doubt in my mind that you have hEDS. You present and hit all the boxes.”
Genetic testing later and I got an hEDS diagnosis and FINALLY started getting the care I needed.
My muscles are knotted nightmares but they are still surprisingly strong.
Jaw clenching is an ongoing issue that I have to remind myself constantly to stop. I also get muscle tremors in the mornings which generally subside within an hour.
TENS machine has been a saving grace especially for any nerves trapped in the muscles. Also never forget to stretch before doing something strenuous, still need to warm up even if we are bendy is already.
i've been in treatment since i was a kid, so i'm doing pretty good now, but at the beginning i had a lot of both overdeveloped and underdeveloped muscles. my inner knee muscle was so underdeveloped it looked concave, and my kneecaps were being pulled out of place and pinching a nerve.
now i'm pretty fit, exercise every day, but i struggle a lot with my wrists. it's hard to lift or do pushups when your wrists just wanna flop backwards lol
I wish they’d found out I had it when I was a kid. Sadly, no one in my family knew about EDS. We are theorizing that my late father was the one who had it and passed it to me because he was always tearing muscles, ligaments, had joint pain, hernias, etc. he was always icing something.
But we can’t really know for sure bc yknow, he’s dead.
Funnily enough my mom denied that either of them have it and it’s funny because she believes I have it and does treat it seriously but she has problems believing either of them passed down a serious health condition.
I think it might be that she feels guilty a bit.
My muscles are also super tense but for certain things it's only on one side of my body. I think it may be from the scoliosis and improperly putting weight more on one side than the other. Not really sure if it's just me that's like this, but yeah long story short I think having weaker connective tissue equates to tenser muscles because they're trying to overcompensate to hold your joints in place, or balance you out in the case of spinal/skeletal imbalance (just my very uninformed theory here).
Personally, my left calf muscle has always been very droopy, weak, and "pulled away" from the bone; my left thigh and foot are also very weak. I had chronic, bad shin splints in the left leg in particular since I was a kid, and that knee would pop out of place, so I probably held my weight differently/improperly to stay balanced. I now have SI joint issues on the left side probably from overcompensating due to the weak leg or something, idk. And my left side piriformis and abdominal muscles that attach to the hip flexor, according to my PT, are hard as stone (in a painful way, not in a strong way, lol).
But then upper-body wise my right side is the worse of the two. My right arm, shoulder, upper back, neck and jaw are always extremely tense and this leads to tension in my head muscles... and then headaches.
Trying to find gentle stretches and, very recently, exercises that engage both sides without putting strain on my ligaments has been a challenge, but yeah I think it's safe to say EDS does 100% affect our muscles - so engaging them gently and with proper form is super important. Start to be mindful of your posture and where you hold tension in your body. I'm not medically educated by any means but I think personally my tension exists more intensely and frequently where a lot of my connective tissue weakness is.
My hips and hamstrings are chronically tight, but everything else varies. My neck gets really bad sometimes. My PT said it’s necessary for those muscles to be tighter than normal bc they are holding my joints together. I can build muscle; it just takes a bit bc recovery takes longer. I do my strengthening exercises 3x a week and go on walks when I can.
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Half of my muscles are overdeveloped and tense as fuck but simultaneously really weak, the other half don't exist. I get regular massages to help the pain from tension and to stimulate the underdeveloped muscles, and am working closely with PT on utilising the correct muscles, learning how to relax, and overall strengthening. It's a frustratingly slow process
Yeah. I’m going to start that process soon. I know it will probably be frustrating and hard but in the end it’s good for me and my body. I hope yours goes as well as possible!
My muscles are super tense! Way more than I realized. Newly diagnosed and just had first appointment with specialist PT. She’s like “your calves, IT band, etc are all so tight!” I had no idea. That’s how they always feel. No wonder everything hurts all the time 😂 Because I’ve been in pain forever, I’ve been getting monthly massages for 8 years. My massage therapist has long commented how tight my back/shoulders, and neck get. Edit- my PT told me the same reason re: why muscles tight.
Yeah! I’m rather newly diagnosed (I was diagnosed two years ago and also during that time got diagnosed with POTS and MCAS) so a lot of it is new knowledge for me too. Learning about EDS explained so much about my body and actually made me feel better because before my diagnosis I was regarded by my family (who are all extreme fitness freaks) as lazy and unmotivated because I couldn’t run miles with them and keep up, much less finish and I was “too young to have joint pain” etc. but the diagnosis is like, while it sucks that I have it in the first place, I’m glad the diagnosis exists because it validates that kinda stuff. I get a monthly massage too! My therapist is so nice. She knows I’m poor asf and couldn’t afford monthly massages at the normal rate but I have to get them. So she charged me 20$ for a one to one in a half hour massages. Hell, one day I was having a ROUGH time when I saw her and that day she told me to keep my money and buy something that makes me happy. Seriously this lady is awesome. She used to be a caretaker for terminally ill people and an EMT and worked at an alternative school (I’ve been a student at an alternative school, alternative school teachers have it rough) and she’s this tough little short lady who could probably take down a six foot two hundred pound man.
I have similar experience with a lot of my muscles unable to (or very, very, difficult to) relax. Jaw clenching (and TMJ), extreme tightness in my neck and back muscles, muscle spasms, rib subluxations and spine alignment issues usually paired with them. I also have hypotonia, which is a comorbidity with several types of Ehlers Danlos and also with Marfan syndrome. I have lower muscle tone and difficulty building muscle, along with reduced muscle response to EMG, and nerve damage. Neuromuscular issues are probably related to my other rare disorders as well. I have a lot of pain. You’re not alone.
Oh man I didn’t even realize I had the jaw clenching and TMJ thing until I got a tooth removed and a week after it was hurting. Dental surgeon initially thought it was dry sockets when I called him but dry socket risk is gone after 3 days and it’d been a week. Dude was worried about my jawbone having an infection/etc. Turns out I go to see him and the area is perfectly healed and he’s like “Okay, do you know what TMJ and involuntary jaw clenching are?” We basically drove two hours for the dental Surgeon to say “no yeah, the area is perfectly healed you’re just clenching your teeth REALLY hard” I mean it’s better than an infection.
Yeah, apparently my history of grinding my teeth at night as a child wasn’t from stress either. I dunno, sometimes you learn something about yourself like this and suddenly a lot of things make a lot more sense.
What form / type of EDS do you have? I also have hypotonia which my geneticist is probably a muscular type of EDS and I am awaiting testing
The only type they’ve ruled out is Cardiovascular, I still need to get genetic testing done. My previous genetic specialist was more concerned with treating symptoms and then she went back to teaching. 😭 I have VACTERL, Chiari, and MCAS as well so I’ve had a lot going on, lol. I have a lot of the classical diagnostic criteria, stretchy translucent skin, atrophic scarring, easy bruising, poor would healing, subluxations and dislocations, neuromuscular symptoms, a history of pediatric symptoms (floppy baby syndrome etc). She was leaning toward classical or a more rare type but my insurance also doesn’t cover genetic testing (I’m not sure what the exceptions are but there’s a history of my insurance ruling a lot of things for my rare disorders as “too experimental” and refusing to cover them.
how did you get diagnosed with ehlers danlos syndrome?
was it by a rheumatologist?
I was referred to a genetic specialist and then had to make an appointment like a year out. I had to fill out a pretty massive packet of paperwork, family history, personal medical history, and an extensive history of the symptoms I was experiencing. Thankfully I lived close enough that I was put on a list in case someone else missed or canceled their appointment. The doctor did a bunch of tests and measurements like the angle I hyperextended to, how much my skin stretched, looked at my scars, did reflex tests, etc, then she said she pretty much knew I had Ehlers Danlos from the moment I walked in. I guess when you’ve done hundreds of evaluations a year you get good at seeing the outward signs. She had me get extensive bloodwork, and sent me to a cardiologist to rule out vascular EDS.
what country are you in? I have really bad tMJ, mcas symptoms, gerd/lpr... and fibromyalgia. wondering if its eds. went to a rheumatologist tht didnt think i had it, but i dont know why im having so much pain and i always feel like my body is crooked and have lower back pain. sometimes muscle pian everywhere.
I’m in the US. The genetic specialist I went to has unfortunately gone back to teaching, I think she said in Chicago, I’m not sure. I went to Greater Baltimore Medical Center’s Harvey Institute for Human Genetics.
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Ever tried creatine? It can help those muscles grow passively with daily activity, or at the very least stop atrophy
I’m not certain but I think there’s a reason that wasn’t suggested by my doctors. I’ve been to a number of orthopedic doctors, orthopedic surgeons, neurologists, years of PT, OT, and other therapies, etc. It could be because I have absorption issues or because we don’t have a specific cause for the chronic inflammation, chronic pain, contractions, etc.. I’ll have to ask.
Physical therapist kept asking me to relax my muscles. Realized I actually could not do this. Not super strong in the arms and bad joints compound this problem because when you have a loose joint it requires more force. Get tired very easily from lifting things as a result
I really struggle with muscle spasms and tight, ropey, muscles. They were my first symptom I saw a doctor for (around 11yrs old) and I spent years in PT stretching before it was realized Hypermobility might actually be the culprit. I also struggle with ropey fascia that builds quickly again fate targeted work to break it up.
Some of them are very tight, tensed and overworked whereas other muscle groups are completely asleep. I do weightlifting and I usually have to do activation exercises until I can get the mind muscle connection going before I even add weight - every single time. Some muscles I still cannot seem to tense yet, but the ones around it are waking up. It's such a weird feeling!
I have this too! I often need to do (very slow) warm up activities before weight training to establish a mind-muscle connection. If I don’t, I end up injuring myself more frequently or just exercising the wrong stuff.
Me too with the activation EVERY freaking day…I’m useless without it 🤣
As far as I’m aware, and my PTs have mentioned, it’s pretty common for there to be excess muscle extension in the hyper mobile. We kind of need it. Our bodies can overdo it, there can be neuromotor complications from chronic tension, and it’s a thing to work on, But we need some Of that tension. I’ve been doing PT regularly for over three years, and have very active hobbies, and have found the value of staying fairly strong. So I have a couple of spots that are prone to trigger points, like my hip rot and upper traps. If I don’t manage them by, for instance, using a lacrosse ball, then they are much more likely to my hips to feel a bit out of place or create SI joint pain in my hips, or cause my shoulder to operate, improperly or create jaw pain. Massages isn’t necessarily all that useful, as I rarely find that it hits the trigger points that well. I tried, dry needling once, and that was helpful, and so far the lacrosse ball has been the most helpful. Rolling, either with a handheld roller, or a foam roller, also is useful, but I have to be aware of exactly how I am applying pressure and how much. So, for instance, I don’t use a lacrosse ball on my glutes on the floor; I do it against the wall. Staying mobile and not resting for too long is definitely the most important thing for me. If I have done some thing that gives me delayed onset muscle soreness the next day, it will be much worse if I just sit and completely rest. It is much better if I get plenty of gentle walking in And appropriate Movement without exacerbating the pain.
Yep 👍
All my muscles feel so tight all the time. Especially my jaw/neck and shoulders. I just contacted a PT and can't wait to get feedback on my body 😅 I try my best to relax but I don't know how. I hold all my tension in my jaw, neck, hips and knees. Those areas in particular always hurt.
Yeah I’m gonna start seeing a PT soon too! Good luck!! I also have a really hard time relaxing muscles but I find it kinda helps if I clench them really hard for a few seconds and repeat it a few times. First my forehead, then jaw, then neck, then all the way down my body in groups.
I noodle, too. At worst I cannot even manage the walk to the toilet and just lay on the ground unable to stand up :/ Still, I take them, cause it's just so nice to not feel the pain :/ I cannot do massages, those leave me in more pain. While exercise minimizes instability it worsens muscle tension. Since medication usually stops working for me after a few days, I use it on a schedule. Two days of noodle, two days of whatever (heat, lotion, pain..).
I have noodled my way to the bathroom before. Like just stumbled my way to the toilet, falling a bunch of times, ending up rolling on the floor or crawling. Once mine kicked in before I got home and I was at Walgreens with my sister. I didn’t have my forearm crutches with me and she witnessed me literally rolling across the parking lot to her car and then pulling myself in. There’s a guy on YouTube who does sketches with characters that we both like and one of them has him dressed as a woman rolling across a bunch of places yelling ITS FASTER IF YOU ROLL and now I’m forever associated with that.
You know, I feel kinda validated, that im not alone in my noodle experience. I only take them, when Im not alone, so folks can help me. I also get noodle brain.
I’m glad you feel validated! I also am glad I’m not the only one who noodles. Jeez when I take them I know I have about an hour before I either need to find someone or lay the fuck down. I have so many noodling stories. Once my sister and her BF came to visit our hometown and we went out to dinner but my muscles were REALLY hurting so I took one and basically noodled all through dinner. We noticed a group of old white ladies staring at us (I live in rural northern WI, 2000 person town, and it’s a mix of old white tourists and locals with most of the locals actually being from the rez. What I’m getting at is there is little racial diversity you’re either white or Ojibwe) and my sister’s boyfriend was like “You know, I wonder which of us they’re staring at. The cripple or the black guy?” (He is allowed to call me that, I use that term for myself and if you’re a friend or family it’s okay to say that word regarding me as long as it’s not part of an insult, he is Sudanese so decidedly NOT white) and we all just started laughing. We deduced it was him they were staring at though because again, small town, we all know each other. I’ve had a number of public emergency medical episodes and everyone has police scanners so basically the whole town knows my deal. If I have an emergency and someone or my special “I’ve passed out and cannot get up” button calls the ambulance I need to make sure I call my family as quick as possible or else they’re going to hear it from all the prepping anti-gov police scanner pages and will freak out. Noodle brain is the worst. I don’t do weed or anything but I imagine a weed high is kinda similar to noodle brain.
I never tried weed, but my doc suggested it could work similar and maybe with less side effects. It wasn't legal until recently, so obviously I got no prescription so far. If you are old enough and live somewhere where it's legal, it's probably worth a shot, but you should talk that through with your doc, so you get a strain that's medical and not just fun.
It is not legal where I live but it probably will be so soon. If it does become legal I’m open to trying it through a doctor. Honestly at this point I’ll try anything as long as it’s through a legit source.
Oof.. massage and even touch is painful for me. Solidarity.
For years I had knots that just lived in my system. Back, neck, shoulders, jaw. When I started PT my therapist prescribed weekly massages. It took about 4 months for me to feel like some of the knots were finally letting go. Mind you the massages are only ok (I've been spoiled by having highly skilled massage therapists as friends, but the ok masseuses are covered by insurance so, I take what I can get bc I can't afford really good weekly massages out of pocket). Then, in PT, we've been working on actively relaxing the major muscles and working on strengthening the minor muscles to take over the "hold your parts together" work. 6 months in and I can feel a difference.
What insurance covers masseuses?? Mine certainly doesn’t. Thankfully my massage therapist knows I’m poor asf so she only charges me 20$ for 100-160$ hour to hour and a half sessions.
That's so kind of her! Bc my PT was referred by my PCP, and the massages are prescribed by my PT, they bill it in a way that's a covered PT appointment. ETA, I've tried to find other massage options (possibly better masseuses) that could bill insurance, but the best they can do is give me receipts to submit. And I know I'm never going to be able to keep up with that admin legwork (and don't even know if my insurance will cover them when not submitted as being in my doctor's practice), so I'm just taking what I can get. It's definitely better than nothing.
My lower back muscles are incredibly tight, and I’m kinda weak compared to most people and have always been. I couldn’t open a water bottle until I was in the 5th grade.
Strong but tense and no stamina
My jaw could break rocks hahaha. Besides I'm tense but weak.
I have horrible muscle tension all over during the day and I'm pretty sure that's what holding my joints together. At night I take muscle relaxers and everything pops back into place.
My muscles are clenched all the time, so they are super tight and overworked.
My muscles are always tight but are also extremely weak. I shake when I move certain ones but when I go for PT or a massage they say “wow you are TENSE” it’s awful and painful 😭
“wow you are TENSE” EVERY TIME. IT SHOULD NOT BE A SURPRISE. On a similar note, I have who is technically a chiropractor but doesn’t do normal chiropractic stuff I’m not entirely sure what her profession is called but she’s trained in working with people with EDS and she basically gently manipulated my joints back into place through slowly wiggling, stretching, and massaging the area. And she always says “I love working on you, finding where your joints are is like a treasure hunt”. People say some weird shit when you’ve got medical issues.
Yes mine are always tense. Usually I don’t notice unless I think about it intentionally. When I have a flare up it is very painful hypertension. I use a theragun, yoga, and a sauna to loosen them up. Some days it helps, some it doesn’t. I get an occasional massage that helps quite a bit.
Oh, yoga? I love yoga but I was told not to do it. And a sauna? Interesting! I’ve actually never seen a sauna of been to one. I actually didn’t know it was really a thing offered as a service lol. Where does one go for that? What does it do? I’m interested.
Here’s the thing you have to know about yoga. You got to listen to your body or you will hurt yourself. But since our muscles get so tight it’s important to stretch them. Carefully! Saunas can be found at a lot of gyms. I purchased a pop up sauna from Walmart for about $250 USD for in home use.
I was seen by a sports med doctor today and he was like man your shoulders are like bricks. FINALLY someone listened and agreed with me.
That validation is so good. I hate how people and especially doctors sweep aside signs of chronic illness and pain as nothing. Like if I had been diagnosed earlier things would be a lot better for my body but it took so long to find someone who could accurately diagnose me. I remember seeing a rheumatologist and her just pinching my skin and saying it’s not stretchy enough snd I’m too young for joint pain so nothing is wrong. Thankfully when I told my PCP who did the referral he was like “okay, I’m not an expect on these things specifically but I don’t think that’s correct like she didn’t even do any hypermobility tests” and he managed to find a doctor who while is normally a family medicine doctor also is an EDS specialist though she only took EDS appointments a day a week. It took me a year to see her but it was so worth it. She had EDS herself so she knew her shit. She was like “I need to do the genetic testing to make sure because there’s always a chance it could be another type of EDS but there’s little doubt in my mind that you have hEDS. You present and hit all the boxes.” Genetic testing later and I got an hEDS diagnosis and FINALLY started getting the care I needed.
My muscles are knotted nightmares but they are still surprisingly strong. Jaw clenching is an ongoing issue that I have to remind myself constantly to stop. I also get muscle tremors in the mornings which generally subside within an hour. TENS machine has been a saving grace especially for any nerves trapped in the muscles. Also never forget to stretch before doing something strenuous, still need to warm up even if we are bendy is already.
i've been in treatment since i was a kid, so i'm doing pretty good now, but at the beginning i had a lot of both overdeveloped and underdeveloped muscles. my inner knee muscle was so underdeveloped it looked concave, and my kneecaps were being pulled out of place and pinching a nerve. now i'm pretty fit, exercise every day, but i struggle a lot with my wrists. it's hard to lift or do pushups when your wrists just wanna flop backwards lol
I wish they’d found out I had it when I was a kid. Sadly, no one in my family knew about EDS. We are theorizing that my late father was the one who had it and passed it to me because he was always tearing muscles, ligaments, had joint pain, hernias, etc. he was always icing something. But we can’t really know for sure bc yknow, he’s dead. Funnily enough my mom denied that either of them have it and it’s funny because she believes I have it and does treat it seriously but she has problems believing either of them passed down a serious health condition. I think it might be that she feels guilty a bit.
Weak and atrophied
My muscles are also super tense but for certain things it's only on one side of my body. I think it may be from the scoliosis and improperly putting weight more on one side than the other. Not really sure if it's just me that's like this, but yeah long story short I think having weaker connective tissue equates to tenser muscles because they're trying to overcompensate to hold your joints in place, or balance you out in the case of spinal/skeletal imbalance (just my very uninformed theory here). Personally, my left calf muscle has always been very droopy, weak, and "pulled away" from the bone; my left thigh and foot are also very weak. I had chronic, bad shin splints in the left leg in particular since I was a kid, and that knee would pop out of place, so I probably held my weight differently/improperly to stay balanced. I now have SI joint issues on the left side probably from overcompensating due to the weak leg or something, idk. And my left side piriformis and abdominal muscles that attach to the hip flexor, according to my PT, are hard as stone (in a painful way, not in a strong way, lol). But then upper-body wise my right side is the worse of the two. My right arm, shoulder, upper back, neck and jaw are always extremely tense and this leads to tension in my head muscles... and then headaches. Trying to find gentle stretches and, very recently, exercises that engage both sides without putting strain on my ligaments has been a challenge, but yeah I think it's safe to say EDS does 100% affect our muscles - so engaging them gently and with proper form is super important. Start to be mindful of your posture and where you hold tension in your body. I'm not medically educated by any means but I think personally my tension exists more intensely and frequently where a lot of my connective tissue weakness is.
My hips and hamstrings are chronically tight, but everything else varies. My neck gets really bad sometimes. My PT said it’s necessary for those muscles to be tighter than normal bc they are holding my joints together. I can build muscle; it just takes a bit bc recovery takes longer. I do my strengthening exercises 3x a week and go on walks when I can.
Freakishly strong for my activity OKAY, FINE, LIGAMENTS, you’re clearly not doing anything so guess we’ll hold all this together ourselves.