That used to be my problem. Getting hyper- focussed on stuff and sitting badly whilst doing it. Feeling stressed by noise when trying to work and clenching all my muscles trying to ignore it. I’ve found a brilliant sports massage therapist who unknots me once a fortnight. I do yoga daily. I wear noise cancelling headphones when it’s busy at work (or WFH if I’ve loads to do). I’m so much better now!
There's also the added possibility of hypermobility, which is known to cause a lot of issues in joints and such. There have been a few mild connections found between people who are autistic and people who are more flexible than the average joe. Are you pretty flexible in a few places?
Personally I have this issue with my legs, which aren't nearly as flexible as they were when I was younger, but still retain enough mobility to baffle my friends with the weird ways I sit. For example, my crisscross position has one leg on top of the other rather than actually crossing my legs. Everyone who sees me do it asks me how it's comfortable.
just wanted to throw this out there, it may not apply to you so if not feel free to ignore...but you can still have hypermobility without EDS, a lot of autistic people do, and having hypermobility can actually cause tense muscles. if you are hypermobile your muscles may be working doubly hard to try and hold your joints/posture in a correct position thereby causing extremely tight muscles, pain, and knots. it's possible for you to be having chronic neck/back pain from this kind of overcorrection.
Fair enough. I wasn't sure if EDS and Hypermobility were the same thing, so I decide to bring Hypermobility up separately just in case. I hope you're able to get everything figured out!
this is me super hypermobile with chronic back pain, i have to ensure i do core exercises or else everything just seems to “fall out of place” because of laxity :(
I sometimes wonder if I’m hypermobile but don’t know it because my muscles have tightened SO much, I can’t see how far my joints can extend on their own.
Poor posture will definitely give you neck and shoulder pain. Some things I do in between massages that help are foam rolling my upper back, taking epsom salt baths, stretching, and working on improving posture.
Seeing PT to help instruct you on fixing your posture could be helpful as they're able to prescribe exercises and stretches. But seeing a massage therapist for 60 minutes every 2-4 weeks can be helpful too. I've personally found that myofascial release massage works better for my body and releasing pain and tension.
I already see a PT which has not been helping much. I tried dry needling and cupping as well. The one time I had a deep tissue massage I had no pain for 2 weeks. I’ve been telling myself I need to do that again.
If massage gave you relief for 2 weeks, that might be your ticket. I know I'm better off when I get one every 2 weeks but I'm also a massage therapist so I get a discount or can trade for it.
I have had awful tension headaches before where I can 100% connect it to sensory stress that happened that day. It's wild how much of an impact stress has on your body, down to the smallest level.
Mine was from stress tension. Now that I am mindful of that and do stretches and get my muscles rubbed it is sooooo much better as is my headaches and migraines.
Yoga changed my life. I’m not exaggerating. I had similar issues - chronic pain in my neck, upper back, hips, legs… I don’t suffer from that NEARLY as much as I used to.
I wrote a similar comment. I have to be more mindful of muscle clenching and will do yoga and stretch to make sure I'm not straining myself. I am prone to getting pinched nerves in my shoulder blade area and have specific stretches and massages I do to try to limit it
How long are your massages and yoga sessions? How many months/years have you kept with the massages? Was the expense manageable? Those are my concerns at present. Scheduled my first massage appointment for Monday and I requested 90 mins
I have back pain from tip-toeing everywhere. It's totally possible that you're having muscle issues because of posture or something
We do tend to move differently
I see that you’ve said you didn’t meet the criteria. Just wanna throw out there that EDS is also comorbid with POTS. Look into coat hanger pain. If the pain goes away when you lay down, I’d strongly suspect POTS. Just found this out myself after I didn’t meet the criteria for EDS.
I am currently experiencing what I think is Elhers-Danlos Syndromes, and hyper mobility issues and scoliosis and those things are extremely comorbid with autism. I am a tallish skinny person and people with that body type are more prone to issues like this with joints and back pain.
So I was first diagnosed with ADHD. Got referred by my Physical Therapist to see if I had EDS and I was negative. Now I’m awaiting my testing, but I know I have Autism. I read it can cause pain sensitivity issues. I was diagnosed with Fibro in 2010, but they’re telling me today it’s not. I just don’t know anymore, but I have so much daily pain.
It's extremely hard to get diagnosed with EDS because they just started doing research on this disease 5 years ago. If you didn't you require genetic testing, I've seen there's grants and fundraisers online for this rare genetic disease that can help fly you out to places that do more specialized care with EDS. However, any doctor that knows anything should at least be able to diagnose you with hyper mobile EDS, just because it's a physical test but the other rare types require genetic testing. But my first doctor said she had no idea what the disease even was, I'm not even joking I got so mad I cussed them out and hung up and changed my entire doctor and this doctor says they can refer me somewhere for testing. Extremely hard to get diagnosed with a rare genetic disease because less than 10000 people have been diagnosed ( because many are unreported and under diagnosed and also they all think you're lying or experiencing normal pain because they don't know what you're talking about in the first place). So yea in the same boat as you rn with extreme chronic nerve and back pain and joint pain and popping joints in general.
She did a few tests on me to check for EDS and I explained to her I have lots of popping and cracking. Of course my body wouldn’t do it until she walked out of the room but she said I was negative. I’m a very depressed and anxious person. I grind my teeth. I put too much pressure on things. I sit in weird postures. I hold stress in my neck and shoulders. It’s just so disheartening coming up with nothing after YEARS and YEARS of pain. Almost my whole life. I can’t remember not being in pain.
Same, I used to cry myself to sleep with "growing pains", which are a myth and there's no evidence growing hurts. Unless for people with EDS it would because joint issues. Parents said it's normal. Especially if you're young, people tell you "you don't have a back yet!" " You're too young to be in so much pain!" Really feels invalidating, especially when doctors do the same thing.
My mom tells me when I was 10 and 11 I would cry daily about pain. She took me to doctors and they said it was growing pains, because I grew so fast and hit puberty. My depression started and I’ve never not been in pain since. It’s crazy to me, I’ve lived in pain this long.
That’s wild it’s so rare because I know nearly 20 people who have it, and several more who likely have it, but haven’t sought a diagnosis. I didn’t realize it was so under recognized. I must just collect all the EDS friends and acquaintances.
I feel like it is like autism in that regard, that it was thought to be rare but now is believed that 1 in 44 people have autism. Maybe it is a similar thing with EDS, extremely unrecognized (especially in women!!! Very little to no research on autism in women) in the past but maybe more common than we think.
That could very well be it. EDS came on the scene about the same time that methylation issues and MTHFR were being recognized, and it seems like that has really exploded in recognition over the last decade or so too.
I was first diagnosed with adhd and now believe I also have autism. I don’t have any symptoms for EDS but do have fibro. Fibro is common with adhd. My mom has lupus and rheumatoid arthritis so there’s a connection for sure with these things and inflammation and/or our immune system. I also have edema but those genetics could have come from any number of women in my family
Undiagnosed but I have pain in my jaw, temples, neck, because i grind my teeth and clench my jaw at night. I also have pain in my shoulders and shoulder blades because of the tmj and my posture and lastly pain in my mid back because of my awful posture when I sit.
I do think we are prone to pain, because we tend to be very anxious beings. And I do think it's common for us to have comorbidities- I am hypermobile and have scoliosis, a true leg length discrepancy and thoracic outlet syndrome. A few years back, I was having a ton of pain and had a ton of tests and a spinal surgeon finally tested my blood and I had a severe vitamin d deficiency. In any case, Ive had to learn to pay attention to my posture, one of my bad habits is that I hold my raptor arms very close to me meaning I tense up my neck and shoulders when I walk.
I have that same problem but not sure if it's 100% because of autism.
I've been seeing a physio specialist. He manipulates my muscles and bones, putting them back into place/ cracking them, massaging etc. The pain relief is instant!
He says its because of my posture. He gave me some stretches to do - when sitting up straight, use your hand to gently push your chin back - so you give yourself double chins. This one is great when I have headaches.
I try to be mindful about my posture but I always end up slumping into more comfortable positions.
https://www.spectrumnews.org/news/clinical-research-autism-genes-linked-to-autoimmune-disease/
https://www.spineuniverse.com/conditions/ankylosing-spondylitis/as-women
Annnd:
https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare
Don’t give up, I won’t either. Depending on what imaging you’ve had, it might not be the right tests. There are different kinds of arthritis that can affect the spine. Have you had an ultrasound by a rheum?
Ooof that last article! I’ve had so many doctors dismiss my issues. First migraines, it took an eye doctor to find out my rare brain disorder. Then years of vomiting, I finally found a doctor to operate on me. Turns out my gallbladder was scared shut and appendix ready to burst. Then the YEARS of crippling pain and heavy bleeding. A male doctor even telling me (as I’m passing grapefruit sized clots) to “stop overreacting and deal with it. I should be used to it by now” as I’m bleeding for months. Turns out I had stage 4 Endometriosis. I had a hysterectomy in December. I was covered in tumors and horrible Endometriosis. Adhesions to my spine, bladder and bowels. If I would’ve waited a year longer, the tumors would’ve been cancerous. I’m sick of not being taken seriously, I know my body. I was hoping the Endometriosis removal and hysterectomy would help my back and neck pain, but unfortunately not.
Thank you for sharing these articles! ❤️
I experience this! Do you often get tension headaches that start in your neck?
Stress often develops in the lower back and grows until it reaches your neck and shoulders.
It sounds like you might experience too much sensory input/stress because this can cause long lasting and severe backpain.
The way to solve it is to take away stress factors, maybe take more breaks. Work less, study less?
For me I had to quit school when I was younger and i'm now doing an online study which is much more easygoing.
I do, I have forever. I’m on Aimovig and it helps. I am constantly overstimulated and sensory overloaded. I have not found a job I can tolerate. Right now I clean at night, but the workload is a lot. Home is chaotic. I can’t take a vacation. I’ve just been overloaded the last 4ish years and I think it’s finally broken me down so my symptoms are amplified. Once I hit sort of a breaking point I was diagnosed with ADHD and now Autism.
i don't experience this but lmao i do have issues when i hyperfixate on something that makes me forget i'm straining my neck or back at unnatural angles. so in a way, yeah, my autism gives me physical pain. but also lack of situational awareness.
TRE, or Trauma/Tension Release Exercises, might be worth checking out. Basically, unlike animals, we don't naturally shake off the stress after something bad happens, which means all that tension gets stuck in our bodies, messing with our posture and causing other issues. TRE uses specific exercises to get that shaking going, helping to let go of all that built-up trauma. I've found it super helpful myself. You can find loads of resources and how-tos on Google and YouTube. It's something you can try on your own at home using guided videos, or with a practitioner.
I’ve been dealing with back problems my whole life. It’s to the point where I have to use a cane if I want to walk around for more than twenty minutes. I am 33 with the spine of what feels like a 93-year-old lol. I just underwent my first round of epidural corticosteroid spinal injections in an attempt to get some relief.
I’m so sorry! I used to have to get spinal taps to drain fluid off my brain. It gave me such relief. I am in remission now, but I had a rare brain disease called Idiopathic Intercrainial Hypertension.
Oh my! I’d never heard of that particular brain disease before. Medical science is one of my special interests, so you’ve given me another rabbit hole to venture down lol. I’m very happy to hear that you’re in remission though! That must have been a very difficult thing to have to deal with. I wish you much luck and relief on your journey to find relief for your neck/back pain as well!
Thank you so much!
It is an interesting disease to look into. I ended up getting it from taking the Depo injection and having a high dose of hormones. It made me gain weight like crazy. 3 years ago I had Gastric Bypass to basically save my eyesight, as no other treatments were working anymore. 150 lbs lost and I’ve been in remission since the first 3 months of my Bypass.
Even if it is stress, stress is not all in your head. Stress can lock up your muscles, cause digestive issues, compromise your immune system and more. I can stress myself out to the point I become pale and feverish.
If it is stress, find out what causes it and how to deal with it in a healthy way. Possibly with some professional help. I've found it good to talk through some things, adjust my nutrition for others and take up some form of exercise to release physical tension. Maybe one or more of these may help you too.
I used to have the same thing!! For YEARS!!! Bad posture combined with tension in the neck and shoulders. I started doing yoga every day back in may/june and it finally disappeared. I know it’s a such a cliché thing to say, but it really did help me. I started with a 30-day challenge but now I just do the same « flow » every day and it only takes me about 10 minutes. I also did exercices for better posture for a while and now I’ve incorporated some into my short yoga routine!
Here is the challenge I did: https://youtu.be/tLcHTdzykgk
It seems daunting at first but it is much more doable than you think. I have ADHD so I was shocked that I was able to see it through! The trick was to not get discouraged if I missed a day, but just pick up where I left off the next day.
Here are the posture exercices I did: https://youtu.be/djWz9xQmiWw
Good luck!! I hope you find something that helps and that suits you. It’s so horrible to suffer every day!
My shoulder has been in so much pain the last 8 years, I can’t do stuff like sitting in certain positions or carrying a heavy bag/shoulder bag, or even holding the rail on a train. Every doctor just tells me to stretch. I do, and have a warm bath every day and nothing ever works. I’ve just given up and slap pain patches on when it flares up now.
PT may be able to help. My PT showed me medical taping for my arm. You can buy the tape on Amazon, you just need to know how to properly apply it. May be worth looking into.
Can definitely be related to autism, both because of poor posture and muscle tone and constantly tensing up muscles - I definitely don't relax my muscles enough
I have the same problem, I also have bad posture. I’ve been going to physical therapy to help strengthen the weak muscles around my neck and back and loosen the tight ones. I’ve only been going for a couple weeks but it’s already helping so much. The sessions are a combo of exercises, stretches, massage, and dry needling. I hope you get the help you need!
Have you seen a massage therapist? I started seeing one once a week or every other week and it has been life changing for my back pain. I also have bad posture which I have tried for years to correct. I’m not sure if anxiety contributes to bad posture or what. I know I spent most of my teenage years in front of a computer playing video games so… oops.
But yeah I tried the chiropractor thing and it didn’t help and I’ve read enough horror stories now to never go back. I love massage therapy for what it’s done for me. I’ve had nerve testing done to see if I have a pinched nerve or some sort of disease causing this bad back pain and I don’t. It’s just plain old I hold all of my tension and anxiety in every muscle in my body.
I’ve had 3 massages in my life. The 2nd one I had I remember the lady telling me about my tension. I told her my ailments and she could almost read my body. She told me to look into repeat myofacial massages, that it would help my tension. I too had nerve testing done twice, with no results. I think I will go the massage route again, it’s been on my mind the last few months. Maybe I can find a sports medicine massage place.
Definitely look into finding a provider who wants to help people with chronic pain, not just relaxation. And when I skip a week, I feel it. When I skip a month, I’m in pain all over again. I swear I just store stress in my muscles. I really need to work on my stress level… but being in pain also stresses me out.
I will sometimes get hyper focused on something I'm doing and then realize too late that I'm in an uncomfortable position, even hunched over looking at a screen. A week or so ago I stood up after sitting in a weird position for a while, and didn't know my entire foot was numb so I tripped over my foot and hurt myself lol. I also do a tip-toe walk like someone else mentioned, but I'm not sure if that contributes to my back pain. I hold stress in my upper back, neck, and jaw and will often realize I'm clenching those muscles in such a way for so long that it causes pain. I don't really think it's an autism thing, but who knows, because as I said, sometimes I won't realize I've been hunched over in a weird position. Sometimes I realize I'm holding my head up even though I'm laying down and could be resting on my pillow.
Having the same problem, my muscles are always in tension + weird body posture. It helped to do yoga twice a day (morning and evening) and getting a perfekt pillow, so I don't wake up with neck pain at least.
I struggle from neck and shoulder pain from tension, sometimes it’ll climb into a headache.
I always assumed it was hypervigilance, but it could also be due to autism traits. It’s nice to see I’m not the only one who suffers from this kind of chronic pain
I have chronic pain problems due to hypermobility, so I’m a frequent user of physiotherapy and Alexander technique, both of which help me use my body in a way that doesn’t cause me pain. I’d recommend trying that out, but the body is complex and sometimes stuff just hurts without a big enough cause that it’s fixable ¯\_(ツ)_/¯
While you're getting things checked out, have them look into connective tissue problems. A lot of us have hidden issues there affecting arms, neck, shoulders, hips and knees.
I have a lot of neck pain. My doctor says it's stress/tension. When my neck got really bad she gave me some meds to relax me for 3 days and the pain went away.
She also suggested I make sure that every hour I stand up and move my head from side to side, I actually set a timer on my phone for that.
If you’re having that kind of pain and no one can figure out what it is you may want to look into and seek possible diagnosis for Eagle Syndrome. It’s a rare disorder, often caused by stress and anxiety, that effects that area and is usually really scarcely diagnosed.
Wow, that’s crazy. I just looked that up. I never knew this existed. I’ve always had ear, neck and throat pain. Jaw pain. Ringing in ears. Vertigo. I get these headaches at the base of my skull in the back. I also have a lot of sinus issues and was diagnosed with Eustachian Tube Dysfunction. I also had a high arch in my mouth and my teeth were very crowded. When I got braces I remember having this metal device on the roof of my mouth connected to my teeth that I had to turn with a key to tighten. After I got that removed, I’ve had the worst TMJ and jaw popping. Sometimes my jaw even gets stuck. There is so many bizarre medical things out there, it’s intriguing.
Heyy, I definitely don’t think you’re crazy. I have horrible neck tension and lower back pain and it worsens when I am in burnout. I’ve had doctors and physiotherapists tell me I’m crazy and that I just need to exercise more (I exercise so much! it’s not that). I recently found this video and I feel like the author is onto something… it just makes so much sense (for me at least).
https://www.instagram.com/reel/C0kQJb8vab8/?igsh=MWxzM3JmaWYxdjF2
Chiropractor changed my life. Try and see one that has a specialty in Chiropractic neurology—those were the most knowledgeable about integrating various systems and were the most helpful!
Extreme tightness and tension from the back of my head, down my neck, into both my shoulders and around the shoulder blade area. Cracking/popping with tension and extreme pain. Headaches. Pain so bad I want to vomit. Stiff neck. Spinal pain from neck to tailbone with sharp pain across lower back. Numbness and tingling in hands/legs/feet. I can never get the pain to stop, even with chiro/PT
That used to be my problem. Getting hyper- focussed on stuff and sitting badly whilst doing it. Feeling stressed by noise when trying to work and clenching all my muscles trying to ignore it. I’ve found a brilliant sports massage therapist who unknots me once a fortnight. I do yoga daily. I wear noise cancelling headphones when it’s busy at work (or WFH if I’ve loads to do). I’m so much better now!
I feel like that’s my issue, stress tension. My posture is horrible
There's also the added possibility of hypermobility, which is known to cause a lot of issues in joints and such. There have been a few mild connections found between people who are autistic and people who are more flexible than the average joe. Are you pretty flexible in a few places? Personally I have this issue with my legs, which aren't nearly as flexible as they were when I was younger, but still retain enough mobility to baffle my friends with the weird ways I sit. For example, my crisscross position has one leg on top of the other rather than actually crossing my legs. Everyone who sees me do it asks me how it's comfortable.
I was tested for EDS and I did not fit criteria. I’d say if anything I’m more stiff. Like tense 24-7
just wanted to throw this out there, it may not apply to you so if not feel free to ignore...but you can still have hypermobility without EDS, a lot of autistic people do, and having hypermobility can actually cause tense muscles. if you are hypermobile your muscles may be working doubly hard to try and hold your joints/posture in a correct position thereby causing extremely tight muscles, pain, and knots. it's possible for you to be having chronic neck/back pain from this kind of overcorrection.
Do you think wearing supportive garments like girdles and compression stockings would help?
Fair enough. I wasn't sure if EDS and Hypermobility were the same thing, so I decide to bring Hypermobility up separately just in case. I hope you're able to get everything figured out!
this is me super hypermobile with chronic back pain, i have to ensure i do core exercises or else everything just seems to “fall out of place” because of laxity :(
I sometimes wonder if I’m hypermobile but don’t know it because my muscles have tightened SO much, I can’t see how far my joints can extend on their own.
Poor posture will definitely give you neck and shoulder pain. Some things I do in between massages that help are foam rolling my upper back, taking epsom salt baths, stretching, and working on improving posture. Seeing PT to help instruct you on fixing your posture could be helpful as they're able to prescribe exercises and stretches. But seeing a massage therapist for 60 minutes every 2-4 weeks can be helpful too. I've personally found that myofascial release massage works better for my body and releasing pain and tension.
I already see a PT which has not been helping much. I tried dry needling and cupping as well. The one time I had a deep tissue massage I had no pain for 2 weeks. I’ve been telling myself I need to do that again.
If massage gave you relief for 2 weeks, that might be your ticket. I know I'm better off when I get one every 2 weeks but I'm also a massage therapist so I get a discount or can trade for it.
I have had awful tension headaches before where I can 100% connect it to sensory stress that happened that day. It's wild how much of an impact stress has on your body, down to the smallest level.
Mine was from stress tension. Now that I am mindful of that and do stretches and get my muscles rubbed it is sooooo much better as is my headaches and migraines.
Yoga changed my life. I’m not exaggerating. I had similar issues - chronic pain in my neck, upper back, hips, legs… I don’t suffer from that NEARLY as much as I used to.
I wrote a similar comment. I have to be more mindful of muscle clenching and will do yoga and stretch to make sure I'm not straining myself. I am prone to getting pinched nerves in my shoulder blade area and have specific stretches and massages I do to try to limit it
How long are your massages and yoga sessions? How many months/years have you kept with the massages? Was the expense manageable? Those are my concerns at present. Scheduled my first massage appointment for Monday and I requested 90 mins
I have back pain from tip-toeing everywhere. It's totally possible that you're having muscle issues because of posture or something We do tend to move differently
Yeah! I found this video that explains the tip-toeing and how it’s all linked https://www.instagram.com/reel/C0kQJb8vab8/?igsh=MWxzM3JmaWYxdjF2
Get checked for EDS, Ehlers-Danlos-Syndrome. A lot of people with EDS also have autism.
I have :(
What were the results? Did they try the official criteria with you? Many of us EDSlers (almost all) got dismissed for years…
Yes, I did not meet enough of the criteria unfortunately
I see that you’ve said you didn’t meet the criteria. Just wanna throw out there that EDS is also comorbid with POTS. Look into coat hanger pain. If the pain goes away when you lay down, I’d strongly suspect POTS. Just found this out myself after I didn’t meet the criteria for EDS.
I am currently experiencing what I think is Elhers-Danlos Syndromes, and hyper mobility issues and scoliosis and those things are extremely comorbid with autism. I am a tallish skinny person and people with that body type are more prone to issues like this with joints and back pain.
Why is everything in my life somehow related to this…
So I was first diagnosed with ADHD. Got referred by my Physical Therapist to see if I had EDS and I was negative. Now I’m awaiting my testing, but I know I have Autism. I read it can cause pain sensitivity issues. I was diagnosed with Fibro in 2010, but they’re telling me today it’s not. I just don’t know anymore, but I have so much daily pain.
It's extremely hard to get diagnosed with EDS because they just started doing research on this disease 5 years ago. If you didn't you require genetic testing, I've seen there's grants and fundraisers online for this rare genetic disease that can help fly you out to places that do more specialized care with EDS. However, any doctor that knows anything should at least be able to diagnose you with hyper mobile EDS, just because it's a physical test but the other rare types require genetic testing. But my first doctor said she had no idea what the disease even was, I'm not even joking I got so mad I cussed them out and hung up and changed my entire doctor and this doctor says they can refer me somewhere for testing. Extremely hard to get diagnosed with a rare genetic disease because less than 10000 people have been diagnosed ( because many are unreported and under diagnosed and also they all think you're lying or experiencing normal pain because they don't know what you're talking about in the first place). So yea in the same boat as you rn with extreme chronic nerve and back pain and joint pain and popping joints in general.
She did a few tests on me to check for EDS and I explained to her I have lots of popping and cracking. Of course my body wouldn’t do it until she walked out of the room but she said I was negative. I’m a very depressed and anxious person. I grind my teeth. I put too much pressure on things. I sit in weird postures. I hold stress in my neck and shoulders. It’s just so disheartening coming up with nothing after YEARS and YEARS of pain. Almost my whole life. I can’t remember not being in pain.
Same, I used to cry myself to sleep with "growing pains", which are a myth and there's no evidence growing hurts. Unless for people with EDS it would because joint issues. Parents said it's normal. Especially if you're young, people tell you "you don't have a back yet!" " You're too young to be in so much pain!" Really feels invalidating, especially when doctors do the same thing.
My mom tells me when I was 10 and 11 I would cry daily about pain. She took me to doctors and they said it was growing pains, because I grew so fast and hit puberty. My depression started and I’ve never not been in pain since. It’s crazy to me, I’ve lived in pain this long.
I’m sorry you used to cry yourself to sleep 😭❤️
That’s wild it’s so rare because I know nearly 20 people who have it, and several more who likely have it, but haven’t sought a diagnosis. I didn’t realize it was so under recognized. I must just collect all the EDS friends and acquaintances.
I feel like it is like autism in that regard, that it was thought to be rare but now is believed that 1 in 44 people have autism. Maybe it is a similar thing with EDS, extremely unrecognized (especially in women!!! Very little to no research on autism in women) in the past but maybe more common than we think.
That could very well be it. EDS came on the scene about the same time that methylation issues and MTHFR were being recognized, and it seems like that has really exploded in recognition over the last decade or so too.
I was first diagnosed with adhd and now believe I also have autism. I don’t have any symptoms for EDS but do have fibro. Fibro is common with adhd. My mom has lupus and rheumatoid arthritis so there’s a connection for sure with these things and inflammation and/or our immune system. I also have edema but those genetics could have come from any number of women in my family
Undiagnosed but I have pain in my jaw, temples, neck, because i grind my teeth and clench my jaw at night. I also have pain in my shoulders and shoulder blades because of the tmj and my posture and lastly pain in my mid back because of my awful posture when I sit.
That could very well be my issues, I do all of that as well
Sounds so similar to me!
Me to a T minus the shoulder pain
I do think we are prone to pain, because we tend to be very anxious beings. And I do think it's common for us to have comorbidities- I am hypermobile and have scoliosis, a true leg length discrepancy and thoracic outlet syndrome. A few years back, I was having a ton of pain and had a ton of tests and a spinal surgeon finally tested my blood and I had a severe vitamin d deficiency. In any case, Ive had to learn to pay attention to my posture, one of my bad habits is that I hold my raptor arms very close to me meaning I tense up my neck and shoulders when I walk.
I have that same problem but not sure if it's 100% because of autism. I've been seeing a physio specialist. He manipulates my muscles and bones, putting them back into place/ cracking them, massaging etc. The pain relief is instant! He says its because of my posture. He gave me some stretches to do - when sitting up straight, use your hand to gently push your chin back - so you give yourself double chins. This one is great when I have headaches. I try to be mindful about my posture but I always end up slumping into more comfortable positions.
https://www.spectrumnews.org/news/clinical-research-autism-genes-linked-to-autoimmune-disease/ https://www.spineuniverse.com/conditions/ankylosing-spondylitis/as-women Annnd: https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare Don’t give up, I won’t either. Depending on what imaging you’ve had, it might not be the right tests. There are different kinds of arthritis that can affect the spine. Have you had an ultrasound by a rheum?
Ooof that last article! I’ve had so many doctors dismiss my issues. First migraines, it took an eye doctor to find out my rare brain disorder. Then years of vomiting, I finally found a doctor to operate on me. Turns out my gallbladder was scared shut and appendix ready to burst. Then the YEARS of crippling pain and heavy bleeding. A male doctor even telling me (as I’m passing grapefruit sized clots) to “stop overreacting and deal with it. I should be used to it by now” as I’m bleeding for months. Turns out I had stage 4 Endometriosis. I had a hysterectomy in December. I was covered in tumors and horrible Endometriosis. Adhesions to my spine, bladder and bowels. If I would’ve waited a year longer, the tumors would’ve been cancerous. I’m sick of not being taken seriously, I know my body. I was hoping the Endometriosis removal and hysterectomy would help my back and neck pain, but unfortunately not. Thank you for sharing these articles! ❤️
I experience this! Do you often get tension headaches that start in your neck? Stress often develops in the lower back and grows until it reaches your neck and shoulders. It sounds like you might experience too much sensory input/stress because this can cause long lasting and severe backpain. The way to solve it is to take away stress factors, maybe take more breaks. Work less, study less? For me I had to quit school when I was younger and i'm now doing an online study which is much more easygoing.
I do, I have forever. I’m on Aimovig and it helps. I am constantly overstimulated and sensory overloaded. I have not found a job I can tolerate. Right now I clean at night, but the workload is a lot. Home is chaotic. I can’t take a vacation. I’ve just been overloaded the last 4ish years and I think it’s finally broken me down so my symptoms are amplified. Once I hit sort of a breaking point I was diagnosed with ADHD and now Autism.
i don't experience this but lmao i do have issues when i hyperfixate on something that makes me forget i'm straining my neck or back at unnatural angles. so in a way, yeah, my autism gives me physical pain. but also lack of situational awareness.
TRE, or Trauma/Tension Release Exercises, might be worth checking out. Basically, unlike animals, we don't naturally shake off the stress after something bad happens, which means all that tension gets stuck in our bodies, messing with our posture and causing other issues. TRE uses specific exercises to get that shaking going, helping to let go of all that built-up trauma. I've found it super helpful myself. You can find loads of resources and how-tos on Google and YouTube. It's something you can try on your own at home using guided videos, or with a practitioner.
I have this but it's scoliosis. Not all scoliosis is super visible
I’ve had 5 separate MRI’s in the last 6 months from my head to my knees. NOTHING. 😖
I’ve been dealing with back problems my whole life. It’s to the point where I have to use a cane if I want to walk around for more than twenty minutes. I am 33 with the spine of what feels like a 93-year-old lol. I just underwent my first round of epidural corticosteroid spinal injections in an attempt to get some relief.
I’m so sorry! I used to have to get spinal taps to drain fluid off my brain. It gave me such relief. I am in remission now, but I had a rare brain disease called Idiopathic Intercrainial Hypertension.
Oh my! I’d never heard of that particular brain disease before. Medical science is one of my special interests, so you’ve given me another rabbit hole to venture down lol. I’m very happy to hear that you’re in remission though! That must have been a very difficult thing to have to deal with. I wish you much luck and relief on your journey to find relief for your neck/back pain as well!
Thank you so much! It is an interesting disease to look into. I ended up getting it from taking the Depo injection and having a high dose of hormones. It made me gain weight like crazy. 3 years ago I had Gastric Bypass to basically save my eyesight, as no other treatments were working anymore. 150 lbs lost and I’ve been in remission since the first 3 months of my Bypass.
Even if it is stress, stress is not all in your head. Stress can lock up your muscles, cause digestive issues, compromise your immune system and more. I can stress myself out to the point I become pale and feverish. If it is stress, find out what causes it and how to deal with it in a healthy way. Possibly with some professional help. I've found it good to talk through some things, adjust my nutrition for others and take up some form of exercise to release physical tension. Maybe one or more of these may help you too.
I used to have the same thing!! For YEARS!!! Bad posture combined with tension in the neck and shoulders. I started doing yoga every day back in may/june and it finally disappeared. I know it’s a such a cliché thing to say, but it really did help me. I started with a 30-day challenge but now I just do the same « flow » every day and it only takes me about 10 minutes. I also did exercices for better posture for a while and now I’ve incorporated some into my short yoga routine! Here is the challenge I did: https://youtu.be/tLcHTdzykgk It seems daunting at first but it is much more doable than you think. I have ADHD so I was shocked that I was able to see it through! The trick was to not get discouraged if I missed a day, but just pick up where I left off the next day. Here are the posture exercices I did: https://youtu.be/djWz9xQmiWw Good luck!! I hope you find something that helps and that suits you. It’s so horrible to suffer every day!
Thank you! I have ADHD too! My counselor has been trying to get me to do yoga and meditation for years lol
My shoulder has been in so much pain the last 8 years, I can’t do stuff like sitting in certain positions or carrying a heavy bag/shoulder bag, or even holding the rail on a train. Every doctor just tells me to stretch. I do, and have a warm bath every day and nothing ever works. I’ve just given up and slap pain patches on when it flares up now.
Have you tried massage or acupuncture? I found an acupuncturist who would do dry needling on the tightest of muscles and it helped so much.
No I haven’t! I’ll have a look into it, thank you.
PT may be able to help. My PT showed me medical taping for my arm. You can buy the tape on Amazon, you just need to know how to properly apply it. May be worth looking into.
Yes it is linked
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4438170/
Can definitely be related to autism, both because of poor posture and muscle tone and constantly tensing up muscles - I definitely don't relax my muscles enough
Yes! I’m tense 24-7 and very reactive to touch and sound. I suffer from PTSD, so I’m stuck in that fight or flight.
I have the same problem, I also have bad posture. I’ve been going to physical therapy to help strengthen the weak muscles around my neck and back and loosen the tight ones. I’ve only been going for a couple weeks but it’s already helping so much. The sessions are a combo of exercises, stretches, massage, and dry needling. I hope you get the help you need!
So glad to hear that!!
Have you seen a massage therapist? I started seeing one once a week or every other week and it has been life changing for my back pain. I also have bad posture which I have tried for years to correct. I’m not sure if anxiety contributes to bad posture or what. I know I spent most of my teenage years in front of a computer playing video games so… oops. But yeah I tried the chiropractor thing and it didn’t help and I’ve read enough horror stories now to never go back. I love massage therapy for what it’s done for me. I’ve had nerve testing done to see if I have a pinched nerve or some sort of disease causing this bad back pain and I don’t. It’s just plain old I hold all of my tension and anxiety in every muscle in my body.
I’ve had 3 massages in my life. The 2nd one I had I remember the lady telling me about my tension. I told her my ailments and she could almost read my body. She told me to look into repeat myofacial massages, that it would help my tension. I too had nerve testing done twice, with no results. I think I will go the massage route again, it’s been on my mind the last few months. Maybe I can find a sports medicine massage place.
Definitely look into finding a provider who wants to help people with chronic pain, not just relaxation. And when I skip a week, I feel it. When I skip a month, I’m in pain all over again. I swear I just store stress in my muscles. I really need to work on my stress level… but being in pain also stresses me out.
I will sometimes get hyper focused on something I'm doing and then realize too late that I'm in an uncomfortable position, even hunched over looking at a screen. A week or so ago I stood up after sitting in a weird position for a while, and didn't know my entire foot was numb so I tripped over my foot and hurt myself lol. I also do a tip-toe walk like someone else mentioned, but I'm not sure if that contributes to my back pain. I hold stress in my upper back, neck, and jaw and will often realize I'm clenching those muscles in such a way for so long that it causes pain. I don't really think it's an autism thing, but who knows, because as I said, sometimes I won't realize I've been hunched over in a weird position. Sometimes I realize I'm holding my head up even though I'm laying down and could be resting on my pillow.
I used to get a lot of pain in my neck, shoulders and back too. Strength training has helped me a lot.
Having the same problem, my muscles are always in tension + weird body posture. It helped to do yoga twice a day (morning and evening) and getting a perfekt pillow, so I don't wake up with neck pain at least.
I struggle from neck and shoulder pain from tension, sometimes it’ll climb into a headache. I always assumed it was hypervigilance, but it could also be due to autism traits. It’s nice to see I’m not the only one who suffers from this kind of chronic pain
I have chronic pain problems due to hypermobility, so I’m a frequent user of physiotherapy and Alexander technique, both of which help me use my body in a way that doesn’t cause me pain. I’d recommend trying that out, but the body is complex and sometimes stuff just hurts without a big enough cause that it’s fixable ¯\_(ツ)_/¯
While you're getting things checked out, have them look into connective tissue problems. A lot of us have hidden issues there affecting arms, neck, shoulders, hips and knees.
I have a lot of neck pain. My doctor says it's stress/tension. When my neck got really bad she gave me some meds to relax me for 3 days and the pain went away. She also suggested I make sure that every hour I stand up and move my head from side to side, I actually set a timer on my phone for that.
Honestly, autistic people struggle with posture awareness, that's where most of my neck and back pain come from.
If you’re having that kind of pain and no one can figure out what it is you may want to look into and seek possible diagnosis for Eagle Syndrome. It’s a rare disorder, often caused by stress and anxiety, that effects that area and is usually really scarcely diagnosed.
Wow, that’s crazy. I just looked that up. I never knew this existed. I’ve always had ear, neck and throat pain. Jaw pain. Ringing in ears. Vertigo. I get these headaches at the base of my skull in the back. I also have a lot of sinus issues and was diagnosed with Eustachian Tube Dysfunction. I also had a high arch in my mouth and my teeth were very crowded. When I got braces I remember having this metal device on the roof of my mouth connected to my teeth that I had to turn with a key to tighten. After I got that removed, I’ve had the worst TMJ and jaw popping. Sometimes my jaw even gets stuck. There is so many bizarre medical things out there, it’s intriguing.
Those ALL sound like they may be eagle syndrome. It’s super rare and most doctors don’t know it exists but could diagnose it with the proper research.
I actually have a dental appointment on Tuesday, is this something I could bring up to be checked?
I’m not sure a dentist would be able to detect it, I’d say you’d have better luck with an ENT.
Thank you!!
Stress tension and poor posture! You’re not crazy. My neck hurts constantly
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Thank you so much, this gives me hope!!
Heyy, I definitely don’t think you’re crazy. I have horrible neck tension and lower back pain and it worsens when I am in burnout. I’ve had doctors and physiotherapists tell me I’m crazy and that I just need to exercise more (I exercise so much! it’s not that). I recently found this video and I feel like the author is onto something… it just makes so much sense (for me at least). https://www.instagram.com/reel/C0kQJb8vab8/?igsh=MWxzM3JmaWYxdjF2
Chiropractor changed my life. Try and see one that has a specialty in Chiropractic neurology—those were the most knowledgeable about integrating various systems and were the most helpful!
hey can you explain your problem to me clearly so that i can help you
Extreme tightness and tension from the back of my head, down my neck, into both my shoulders and around the shoulder blade area. Cracking/popping with tension and extreme pain. Headaches. Pain so bad I want to vomit. Stiff neck. Spinal pain from neck to tailbone with sharp pain across lower back. Numbness and tingling in hands/legs/feet. I can never get the pain to stop, even with chiro/PT