I Was Born With Loose Joints | Living In Constant Pain | Benign Joint Hypermobility Syndrome
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- เผยแพร่เมื่อ 6 ก.พ. 2025
- Hey y'all. I was recently told by my rheumatologist that I have something called benign joint hypermobility syndrome, which basically means that I was born with loose joints.
This is going to sound dramatic but I've been living in constant pain my entire life, so it feels good to finally know the reason behind it! I felt like I needed to share this with my subscribers because this pain is a big part of the reason that I haven't always been consistent with my uploading :(
If any of y'all can relate to me, please let me know in the comments!! ❤
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My joints hyperextend too!!! My knees are the worst!! I literally feel your pain
I started doing this but I stretch in the morning before work and I wear a tommy copper sleeve on my knees and that helps a lot!!
It’s the worst in my knees
MY KNEES ARE THE WORST TO I DON'T FEEL ALONE 😂
hey ,if anyone else trying to find out relief for joint pain try Bablim Relief Booster (should be on google have a look ) ? Ive heard some amazing things about it and my colleague got excellent results with it.
Years ago I was diagnosed with ligamentous laxity. I always knew, and was always told, I was hypermobile. By dozens of doctors and my chiropractor. But a few days ago I visited a rheumatologist for (pretty much) the first time. I'm 22, so I guess I'm not that late. We haven't gone over results fully, but after she was done analyzing me, she diagnosed me with hypermobilty syndrome. Putting a name to years of seemly pointless pain is so difficult for me to process, and hearing other people actually talk about this is bizarre and cathartic. I always thought I was just being too sensitive, or I wasn't strong enough or I wasn't hitting the gym enough. Honestly, that's probably true, too, but the tiredness? The near constant pain? Missing time with friends? This cuts deep. I'm so glad and also so sad I'm not alone in this.
Mere bete ko b generalised ligament laxity ki problem batai h or isko by birth hi h Dr ab ye bolte h ...mgr jab ye 10 year ka hua humko tab pata chla ab bar bar iska patella hat jata h .kuch bataiye 😓
i’m so so sorry! :(
I'm 14 and every time I go to a new doctor to try and help me it ends up being ME the one informing them about hypermobilty. When I accidentally pop out my shoulder or my hip hurts badly for a couple days my mom just tells me to put ice on it and her arthritis cream. It makes me really sad because I feel like there's no hope and I can't find anyone around me who can really understand or relate to the physical pain I'm feeling. I hope that one day there will be a cool cure for the pain so that no one else has to feel this frustration and painn. I hope you get through this the same as me, and have a good day/night. Thank you for sharing this story, it made me feel not so lonely 🖤🖤
my last name isn't froyo I am in the same boat people completely disregard the pain xxx
Just keep educating yourself
Me to. Good luck all.
Look up EDS
i was diagnosed with joint hyper mobility syndrome in 2017 when i was 16 after going to my doctors and being sent for x-rays, blood tests and further appointments with specialists. i’m now in weekly physio therapy and take multiple pain killers/sleep medication.
this syndrome is not just physically exhausting but mentally as well.
thankyou for sharing this with everyone not many people know about it ❤️
😆 I am 52 and I am an old lady. 😆 have had eds my entire life. I am just getting officially diagnosed now. So relatable. ❤ ✌
Jeanne, me too.
I haven’t watched/ heard anything more relatable
Me neither !!
So relatable ❤️
Hey Julie, I also have hypermobility syndrome, it’s definitely one of the hardest things to live with on a daily basis, I can totally relate. A lot of people are not aware of this diagnosis and it can be a very debilitating illness. If you continue to experience pain that effects your daily life try and check out Prolotherapy. It’s an injection process that strengthens the ligaments to help support your joints. When our ligaments are to lax they can’t hold bone to bone together, so the pain is from muscles contracting and spasming to pull the joint back into place. It’s called a subluxation which means a partial dislocation So when our body’s move the joint dislocates and the muscle spasms to support the joint back into place. It’s a terrible thing to experience, especially when you may not get the support you need from friends and family. People forget that even though we can’t see something on the outside it doesn’t mean it’s not there. It’s one of the most common misdiagnosis and I wish someone would have told me when I first began really struggling. I hope you can find peace and rest. Take care of yourself!
I've hear horror stories about prolotherapy!
@@mandyrobbins2160 Not to mention insurance doesn't cover it.
I literally going through the same. It sucks there's people in my life that don't belive me or try to understand what I'm going through. But I get at a lot of support from my brother. He was the one who told me I should do prolotherapy. Which is my goal to save money to get these injections. Plus im trying to strengthen my body which is a long healing process because I get alot of inflammation afterwards, which ice packs helps.
@@lissethojeda2466 I would definitely try Prolotherapy if you can, I know it is incredibly expensive but it’s definitely worth it! Especially if all other things you have tried haven’t worked. I totally understand where you are coming from I know how hard it is. It’s very difficult for others to understand what you are experiencing. I’m so glad you have good support from your brother!
Insurance definitely doesn’t cover it but it’s at least a better alternative to so many other failed treatments. I learned the hard way and didn’t even know Prolotherapy existed back then. But honestly it’s all about finding the right Dr. One who is really going to listen and dive deep into a condition that is rarely talked about.
I have been diagnosed for five years with hypermobility and I find exercise really helps. I work with a personal trainer once a week and do water aerobics once a week as well. Exercising in the water helps take the pressure of my joints, knees in particular. Also reducing sugar and crappy foods and alcohol in my diet. I force myself to go out even when I'm not feeling fully up to it because otherwise I get upset and depressed that I'm missing out on life. Although sometimes on a saturday I'll just sleep for 12-14 hours cause my body needs it. So it's good to find someone to talk to that fully understands what you are going through and for me that was my nanna. It's a constant struggle and some days will be better than others but you'll make it through.
If you have hypermobility spectrum disorder or hEDS you must be very careful w exercise. If you are simply hypermobile you have nothing to be concerned about. Being hyper mobile is not a diagnosis but HSD and hEDS are, there’s a difference
What is the diffarance
@@MysticHeather not entirely true, at least in my case. ive been told i can do any exersice, although i try to do exercise on a level that doesnt give my body extra pain for more than two days, which it usually takes my body to recover from training. thats a challenge in itself, though!
/man with hypermobility syndrome
@@Klackala I suppose that depends on how strong you are already and how severe your hEDS is. Regardless it is something we have to consider before taking part in a lot of activities as well as exercise. At least I do but I have global hEDS and am a small woman.
I have this! and it's AGONY! I always say that "If I wasn't in pain, I'd think I was dead" I feel you. It's horrible.
Agreed! :(
I’m watching this in 2021, my youngest was diagnosed with this syndrome at the age of 4. She suffers with pain on the daily and it is very hard as a parent to watch your kid in pain. I feel helpless at times and if she catches any kind of cold it attacks her joints even more. We do not let her feel like she is different from her sister and she can do whatever she wants and is going to live to the fullest. She loves her instruments and is a great kid. Thank you for telling your story!
My daughter is 10 years old and has been suffering since the age of five. She experiences all the pain I feel. We both have it. It hurts to deal with it myself but it kills me to know what pain she is in at such a young age. Her life just started. We are going to work in stabilizing exercises together. At least we know what the problem is, after five years of searching.
Almost IDENTICAL to my story... And the way you describe everything, your thoughts, your feelings, how you explain to other people, SAME! You took EVERY word out of my brain 🧠!
I have Fibromyalgia and Hypermobility syndrome/EDS. It's painful trying to survive let alone thrive. Pacing helps me and warmth. I recently discovered a portable heat belt and neck wrap, you can heat it up with electricity which gives me joy that I don't need to worry about pouring hot water into a hot water bottle or get up often to microwave a microwave plushie. Thanks for this video!
There is a great difference between 'hypermobility' and 'hypermobility SYNDROME'. The addition of the word syndrome makes all the difference. People who are hypermobile have no health issues at all and are the wonderful dancers and acrobats. People who have 'hypermobility SYNDROME' are in constant pain, just like you....those are the people who have health issues. When those two terms get mixed up, people like you, who actually have the syndrome are not taken seriously because everyone thinks they are just hypermobile....(so not the syndrome)....Hope this helps.
And often times, people who are diagnosed with hypermobility syndrome actually have 'ehler danlos-hypermobility type' and are misdiagnosed. Some will never find out though....
Take care of yourself!
The reason some ppl r misdiagnosed is coz they haven't found the gene yet so they want to be 100% sure
But for many ppl it is misdiagnosis
I’m actually an athlete but also have health problems like always having aches, not being able to sleep at night, fractures, and just needing to be careful ALL THE TIME so I don’t hurt myself. I’m always in a lot of pain and sometimes cry at night because of the pain but everyone thinks that I’m overreacting and that it’s not that big of a deal. Like I’m doing it for attention. I’ve had it my whole life and had all these symptoms since I was a toddler and I’ve complained but got diagnosed about 3 months ago. I’ve just stoped talking about it because people always think that’s all I could talk about and that it’s go attention. I feel like if a person don’t have this then they shouldn’t have an opinion on this.
This is what I came down here to say. I’m 36 now, I wish I’d known when I was 24.
@@shanzay3453 hi , I was just gonna let you know if you’re getting frequent fractures you’re probably not dealing w the same thing… unless you mean dislocations and subluxations, these are common w these connective tissue type disorders but not fractures. If it’s fractures then you’re likely dealing w a type of bone disorder not collagen
This is so true, I have the hypermobility joint syndrome and I've pleaded with doctors saying I've tried everything and I'm still in agony, over the counter painkillers, bandages, sport braces, heat sprays and Im always told "keep doing that" when all it does is take some of the pain away im still aching and they say "well there no cure do some of these physio exercises on your own" and still doesn't do much, so I feel this, everyone thinks your lying most the time or over reacting it's nice to see people who know how it feels.
I had developmental hip dysplasia in both hips, I never figured it out as a kid though. I did cheerleading, track and field, lacrosse and soccer and I always thought I was out of shape or just naturally not flexible, I never associated the pain I got as legitimate pain. I didn't start to feel the extreme pain every day until I was 20, and I spent the majority of my college years in the most uncomfortable pain ever, to the point where I had to sleep with a heating pad and walk with a cane/borrow a wheelchair in shops sometimes. Finally almost 4 years later I had my surgeries to fix this, (Peri-Acetabular Osteotomy) where they basically reconstruct my hips! I just had my second surgery a couple of months ago and I can happily say now I'm free of hip dysplasia :)
I totally understand your pain, and wish you all the best Julie, I'm a new subscriber and I love how real you get on your channel :)
This made me cry. i always felt like no one else really felt or understood like i felt everyday. thank you for this
I just found out from a rheumatologist that I have hypermobility syndrome. It makes so much sense for all the symptoms I’ve had for years! As a child I did the “W” sit and had major “growing” pains. I remember my knee going sideways and completely out of joint as I was carrying a file cabinet down some steps when I was 15 yo, but it popped right back in and I never even told anyone because it didn’t hurt any more than usual. I turn my ankles over often often, but never break a bone. So many things! Now to figure out how to deal with it!
Thanks for sharing this. I've been diagnosed 5 years ago but didn't realize what this meant until I couldn't walk for a month or so without crutches, due to pain in my knees last summer. My former therapist told me I just had to work out more and make sure my muscles were strong - my symptoms were severe, but not as bad as this summer of course. The irony was, I had very strong upper leg muscles, because I have been training them ever since I has my diagnosis.
However, I know someone who also has this diagnose at an older age and gained a LOT by diet changes -> to a plant based diet. I've read research about it as well and meat/dairy actually triggers constant infection in our joints. This may be halted or even healed by eliminating animal foods completely from the diet. She tried it out partially at first, but that didn't help. Then she decided to eliminate all animal foods and she now has less pain during her days/activities. It may be an extreme shift, but I am going to try it for sure - and keeping a food diary, which was another advice I got. It's said that trying a plant based diet for about 3/4 weeks will stimulate some effects, so a difference can be measured. I could let you know in a few weeks how that is going for me, if you'd like.
Just some advice to help you out since you've helped me emotionally just by stating what it's like to live with this syndrome - or feeling like an oldie like I also do. I got this food advice recently, which is why I've been looking up more videos about and got to yours :) This diagnosis SHOULD be taken seriously and needs not to be waived off easily, like my former docter even did. :(
THANKS anyways and I hope this helps you too xxx
Julie thank you very much for sharing your experience. I have exactly the same condition. My family and friends don't believe me when i tell them am in constant pain. They would just say hey take that pill and you will be fine. Pain killers don't help. This whole mess gave me depression. I hate to leave my home i just want to stay home relaxing the whole day. Swimming however is my next best thing. Am more and more becoming a water man 😂. Am sad but also glad that there are other people having the same thing am not making it up
Omg you've just made me realise that Hypermobility is why I get so much pain when it's cold!
i just got diagnosed yesterday, ive been have disgusting joint pains for the past two thrids of my life and it was great to know that there was a diagnosis
I have it too. The never ending pain and tiredness are the hardest parts. Massage is a wonderful short term relief from pain! My husband frequently massages me before bed, just to help me sleep! Sleep is a constant challenge though. I rarely go out in the evenings as I just have to rest. However, I try to stay active, eat well and am currently seeing a physiotherapist to try and build muscle strength safely. Thank you for sharing part of your story 🙂
I'm so sorry you have to go through this! Don't feel like you have to post videos consistently! Just make sure that you are feeling well. Your health is 100 times more important than giving us a video on a regular basis!
Honestly I’m so happy this video exists because I have hyper flexibility but I get chronic pain from it a few of my friends have it but only get pain from dislocations. knowing other people feel the same makes me feel so much better. And people alwase brush my pain of and get angry at me for not wanting to do things. This video has made my pain seem real thank you
I about died when you said you feel like an 80 year old woman. I ALWAYS tell people that 😂. I also have hypermobility spectrum disorder and normal pain medication largely doesn't help since a lot of my pain is neuropathic. So much of your story resonated with me it is crazy. It's really hard to deal with the pain especially since it's not explicitly visible. The staying at home with the dogs...and avoiding the freezer section...I mean I do the same thing. I recently got a hot tub (just an inflatable one) and it has helped tremendously. It's scary not knowing if tomorrow will be a good or bad day but I will say that 750mg CBD oil cream has helped the most with my pain. Well essentially the only thing. Hang in there 💜
Omg ;-;
My entire life everyone says I'm so lazy, and no one believes me. I checked my Dr's notes and it literally says hypermobility syndrome and hearing you talk about it is just mind blowing.
Unfortunately, I had a positive rheumatoid factor. Haven't looked into ED, but I don't think so.
Thank you for these tips and tricks. I really appreciate it. 🙏
OMG! I just got out of my first rheumatologist appointment and I was told that I had the joint hypermobility syndrome so I decided to search it on TH-cam and came across you and your video describes me to a T. I am so sorry that you have to go through all of this but at the same time I feel at ease that I’m not the only one you know?
Hi , first time on my channel for you but I found you searching for hypermobile joints. I'm 24 years old too and I was told that I have hypermobile joints two years ago. Hearing you talk about how you always ache in some way and have been for years really struck a chord with me. I hear all the time that I should just suck it up and it couldn't possibly bother me this much. But sleeping sucks so much when you have to turn all the time to not squish any joints because otherwise they'll act up like crazy.
My mom got me some special shoes that have like special cushioning and they really helped me. Shoes in general make a big difference to me. I tried barefoot shoes sneaker style and they were horrible. I feel like the more springiness the sole has the better for my ankles, knees and hips. Shoes can be very expensive(especially the ones my mom bought me from this Swiss brand Kybun) but if one has to buy new shoes, checking for a "soft cushion step type" could be worth it.
Something else that has worked for me was changing my diet. I started to transition from a standard Swiss diet, to vegeterianism and now I'm mostly plant-based. I didn't do this primarily for health but I've noticed that I'm not in so much pain anymore. This was just my personal experience but I've heard on the internet from pro athletes that a more plant-based diet helps to reduce inflammation in our bodies(and it helps them to recover faster between trainings) so that makes sense to me. Surely this won't work for everyone but it could be worth a try.
As you said, warmth is really nice so I try to include as much spice as I can handle into my meals(mostly pepper and some chili powder) as they warm you from the inside. Especially nice in winter :)
Thank you for making this video, it helped me not feel so alone in this. You hearing describe exactly how I feel gave me comfort. I know this video is year old but I hope you are doing well and all the love from Switzerland :)
I am really young and I have these issues also! I am happy I found this video because I have been struggling lately! Thank you, Julie!!!
I've never watched a video that ive felt so connected too. I have the same problems. It's so nice to hear them discussed in a normal to me way. I genuinely cried from the validation 💜 Thanks for the tips on supplements 👍🏻
It's kinda nice to hear someone express everything I've been feeling since I was 11, people really tend to undermine the pain I'm in and because of the prolapsed arches in my feet my entire ligament alignment in my leg is messed up. Honestly considering a wheelchair so I can walk or stand for more than 30 minutes
Nice to find someone to relate too, being in constant pain like someone is breaking your bones all of your life and having family tell you it’s just growing pains.
even I have this today I went to rheumatologist and they told me
I know the feels of feeling like an old lady, i’m a 19yo (vet tech aswell❤️) with autoimmune arthritis
Hi! Last year I just stopped walking for almost 3 months and the pain was excruciating to the point I couldn't even have anything on top of my legs without hurting! My sensitivity to warm things was also affected, cause I could have hot things on top of my legs and not feeling them. With physiotherapy I started walking again and had a some what "normal" rest of the year, until now... Last week I discovered I have hypermobile sindrome, so now, I have excruciating pain on my legs and to top that, on may arms and hands, more so on my right side of the body 😭 that affects my daily life, cause I can't hold anything for long periods of time, even the touch of a pen on my skin hurts! Painkillers do practically nothing to help, only laying down with a heating blanket seems to help a bit. Gonna start a new round of physiotherapy and then exercise with a personal instrutor. So I totally understand what you go through!😢
Hi, I’m really late but I also have hypermobility as well as flat feet which makes it worse. I have been to so many doctors who are sympathetic but don’t really know how to help except for sending me to pt over and over again. It is so frustrating that your body, the one thing that stays with you your whole life and is supposed to be this temple, is turning against you. This has caused a lot of mental health issues for me as well. However, I am trying to start strengthening my body and it helps a bit although I still experience crippling pain. Although it is hard, it has given me so much more perspective and experience. We got this!💗
Hi Julie,
I was diagnosed with hypermobility and gout here recently. Watching you talk about your condition was like watching myself explain my own. I'm 25. It's getting so bad though with all the popping, cracking, and pain! I'm reaching out for help as well. Yu boy willing to try anything too lol. Best advice I have personal is to try and stay healthy as possible and exercise lightly. I can't hardly hold a job anymore. I widdled wood the other day and strangely in 5-10 minutes my whole hand had swollen. also with the gout you wouldnt want to imagine the pain because when my joints swell it pulls/stretches my tendons/ligaments. Same as others I do agree it's nice to see I'm not alone, but I would wish this on nobody. I would like to do some research and digging to find out about collagen. Also hoping to take a trip to Indiana to see a gentlemen named Brad T Tinkle. He is suppose to be very educated on hypermobility.
This is motivating me to see a rheumatologist. My general doctor says I have some hypermobility syndrome but getting diagnosed with one can take a lot of time so I opted for just physical therapy rather than going to see a specialist. Now I think I want to do that. I'm in pain most days and injure myself regularly. Currently, my shin aches but I've barely gotten off of the couch today. 🤷♀️
I’ve just come across this and you are literally the only person I know who has explained my whole life in a nutshell. Living with hypermobility is the worst. And so far nothing helps i can take the strongest strength of ibuprofen and it doesn’t always s work
I was diagnosed with hyper mobile joints few months ago, and I have been suffering for almost 15 years now. Most of the days I can not even sit up straight without a back support, as I feel really weak and painful. I don't know if others have been experiencing this. I also suffer from CFS so that's only making things worse. Thanks for sharing this video and making an awareness!!
I finallhy t the JHS diagnosis at almost 40 y/o. I have always known my joints over-extend, but never got a diagnosis as to why I hurt so much. My rheumatologist says that for people with JHS, over-extending causes 2-3 times the wear and tear of a non-hypermobile joint. Thus, our joints have the wear and tear of someone two or three times our age, which is why we feel like we have old bodies. I am stuck in bed this morning from severe pain in my hips and knees, which are my most hypermobile joints. I guess I’ll be knitting today…thank goodness I can do that in a prone position!
I was just diagnosed with this and at first I was in denial that I had this. But now that I’m doing more reading I can see this is literally me!!! I’m so sad, I feel like I’m 80 years old but I’m still in my 20s. At least it’s nice to have a name to all the pain.
Girl I have this too!!! Constant pain girlies unite!! (I will always be affected by it too xxx) I always struggle to find people talking about the pain of JHS bcs everyone focuses on the extremes of H-EDS... which is good to be talked about but just because I haven't dislocated anything doesn't mean sometimes I struggle to walk and stand just because of the pain :D
Can we make a group to help each other,more than physical its a mental struggle
I'm 84 and am self-diagnosed Ehlers-Danlos Syndrome. A brief history: As a toddler in the early 1940s my ankles had to be taped so I could learn to walk. Ankles remained weak and couldn't ice or roller skate like the other kids. Both knees dislocated when I was age 15. 3 surgeries on both knees. Rt. knee continued to dislocate until 2000 when I had a total knee implant. Also, both shoulders dislocate and have neck and back subluxations. I don't remember what life was like without constant grinding and often piercing pain. Also have IBS and heart problems. If only information had been available to my parents but back then, nobody had any idea of causation.
Omg yes!!!! I'm in pain 24/7 most times!
Medication helps me a bit but i'm still looking for exercices that could help. Normal exercice is just the worst for me!!! Even walking can be painful for me because of this.
I feel you girl!!! Literally😅
Omg Thank you, I have an HSD diagnosis and I feel like it’s all in my head or not as bad as hEds but you have reassured me that it is important!
I’m 37 yrs old now and I am experiencing EVERYTHING you described. From a young age, I’ve always suffered with feet pain whenever I walked a lot and at the age of 26 my knees started swelling and I had to adjust my life dramatically. I stopped dancing. I stopped going for long walks. I stopped hiking. I stopped wearing heels. I just felt OLD. I went through yearssss of physical therapy, xrays and finally an MRI and the doctor suggested I practice yoga and take smaller doses of… antidepressants !!! So I left n never went bk!
I joined a gym and started swimming. Not sure if any of it helped as I still get tired very quickly. Whenever I motivate myself to do any kind of exercise including dancing… I know that my knees will swell and/or something else in my body will hurt for days.
I too feel very old for my age and kinda depressed that I can’t be as active as I want.
Heat helps me too. Going to spa and sauna is a bliss.
My feet hurt me so much too and I tried going barefoot which I believe it helped. However, the pain is constant and worse if I walk more than a mile! It got to a point where no one can massage /touch my feet without me screaming.
Compression socks 🧦 gave me a sort of life back tho! As it holds my joints together for me.
I know that exercising will strengthen my muscles and help with my joints but it’s difficult to exercise when I’m constantly feeling tired + I know that I will hear about the workout for days.
I also concentrate on eating healthy as to reduce any kind of inflammation in my body to help with energy.
I never took extra collagen so thank you for the tip. I will look into that !
God bless you and be with us all 🙏🏻
Hope your doing well❤
As I listened to your story you were describing my life word for word.
I just learned I have this too and all the flexible yoga postures I was getting into was making it worse! Thanks for sharing, I feel validated for my pain. I'm working with a movement coach who also has this, so we're strengthening now to keep me together. I feel like a marionette!
I am hypermoblie. A natural doctor/chiropractor told me. I didn’t know until my 40s! I had to bite the bullet and start strength training to support my joints. I still have pain, but it’s way way less. I take supplements to sleep at night… that’s healing too. Sleep helps with healing. You should see a naturopathic doctor or functional medicine doctor. They will dig deeper and give you more solutions. That’s going to help a lot. Sauna plus icing after helps too. You can DIY a home sauna supper easy. I relate to hate being cold and always being cold… but ice helps 🥶 keep going even when it’s hard!
Wow, i think we might be the exact same!😆 i live in Wisconsin, and am planning on moving somewhere warm BECAUSE of how hard winter is on my body. I wish you well... Im thankful i found this video!💕
I don't know if you'll see this but I just got diagnosed I'm 19 and my doctor gave me literally no information just the diagnosis I feel really defeated some days I can barely walk and he doesn't seem to care very much he didn't tell me at all how I can help reduce pain he said I need to be careful because I'll have this forever and there's nothing that can be done this video helped me realize I'm not alone thank you
Such a great video, you have truly inspired me to speak out about my own experiences living with this horrible condition... I can completely relate to everything to are saying especially about being cold!!! I’m never without my blankets!!! Lots of love xxx
I feel like we are the same person after watching this ☹💕. I don't know what I'd do without my heated seats in my car, it's always a life saver on a really bad day. As well as a heating pad that is just perfect for wrapping around my neck with a bit of neck support. I have severe Osteoarthritis in my spine, but it's at its worst in my C Spine, starting to choke off my nerves in my neck. On top of having Hypermobility, I also have a mountain of other chronic medical conditions. And am currently working with my local Genetics Clinic to try and figure out the missing puzzle pieces. As we haven't been able to connect all of the dots between certain odd medical conditions that just don't make sense. I totally understand how you feel being cold as well. It's the worst, and then it's like your circulation is so bad that you cannot warm up unless you have a bath or shower. When I get cold, it just feels ice ice cold like I've been standing in a freezer.
I'm 35 and in more pain now then when I was younger. Things pop out all the time, my hips hurt all the time sleeping sucks and I constantly crack and pop my joints back. I'm also allergic to pain relief medication (anaphylaxis, true allergies). So I feel you! Nice to know I'm not alone with JHS, sucks that alot of Dr ect don't know much or care much. I do have hydrolised beef gelatin every day.
I have the same thing!It sucks and the aches and pains are awful I was diagnosed with it when I was about 1 and have always been in physical and orthopedic therapy which has always been tiring and boring since I am still young.Its really frustrating at school when they give you a ice pack because it makes it worse.I have also had to explain my condition to my classmates over and over again because they wonder why I get to avoid certain P.E activities and standing for long periods of time.Something I would recommend is stretching before doing something active and to always have a heating pad on hand.
"Warmth is so important " yes I agree, me too - from Alaska 😩
Im 39..just diagnosed finally....thanks to many years of pain and research on my own behalf.....bless your heart...your not alone...thank you so much for making this video. I believe I could also possibly have Ehlors Donlos syndrome if you've never looked into that u should. Ive actually never heard of "benign hypermobile" I was diagnosed just Hypermobile syndrome and amillion other things if course.
Regarding sleeping better...I got the least expensive sleep number bed. I can adjust it to my nightly needs but the real game changer was getting a weighted blanket. Ahhhhh. Wonderful. Don't ask me why but perhaps because the pressure keeps things in place? It's wonderful.
This is incredibly helpful. I’ve been to several doctors and no one could understand why my knees constantly would hurt with no damage seen on xrays. Have had the pains since I was 3 years old and they told my parents growing pains. I’m 27 and the pains are the same and hurt so bad it brings tears. Heat does help mine but the pains are often evenings and night time. Sleep deprivation is real. I think I may look into this more because it sounds like me to a T. Thank you so much for sharing. ❤️ Any other helpful tips would be appreciated.
OMG I danced/did gymnastic/play music /studied music in college. Was always Extremely flexible all my teachers loved me. BUT I was always in constant pain in my knees pretty much all my muscles and join seemed to be constantly aching, my hands and arms were always the worst( I thought it was just normal and I was just probably "sore" and just sensitive). I was always brushed of when mentioned that to Teachers or Doctors or in sports class in school and evening just writing sometime was excruciating . like "take some Advil". I'm approaching 30 and just now I start to ear about this on the internet. Might have saved my studies if I had known this before. In the recent years while I was pregnant I had THE WORST hip pains , even long after giving birth(1 year +) . This is so eye opening. I looked into RSI for my arms and hands and its a much much higher risk with Hypermobility. Everything make so much sense now. I also just realize 15 year later that In ballet classes I should have been thought to not over extend my knees and practice building the muscle to not over extend and that I was pointing my feet wrong all along. LMAO Internet is Amazing.
I was just diagnosed in March at 34 years old. I have all of this and more. Fibromyalgia now too but the worst part is the collagenous colitis. I’ve told my husband for years I’m an 80 year old woman stuck in a young body. It awful :/ My focus, concentration and drive has diminished. I’ve started PT, looking into other treatments, so hopefully someday I will feel better.
I feel you! My hypermobility has caused chronic tendonitis everywhere. I also sprain my wrist ligaments everytime I forget I'm not a normal person and lift something heavy carelessly.
What seems to be the best way to deal with this???
I was diagnosed with hyper mobility arthralga, spina bifida, spinal scoliosis, spinal stenosis and amplified musculoskeletal disorder at the Cincinnati children’s. though hyper mobility arthralga is pretty rare it’s pretty interesting I don’t feel any pain until I accidentally overstretch on accident.
My mom might have had it without knowing it, as she has not only always been very flexible but also has always had joint pain that deteriorated with age. Doctors here in Europe also advice to take collagen type I + type II for joint pains, we usually use the newest form of Swiss collagen + vitamin C which is essential to form it naturally. My mom also uses it, as well as lot of other stuff for the joint and bone pain because of her aging, so not sure if that is the collagen that helps or all the stuff together. As collagen is an essential part of skin as well, its intake has helped some people to maintain a more youthful look and prevent premature skin aging. Anyway, no matter how much we love your videos, your health should always come first, so don't feel you have to make a video on a regular basis. Hardly anyone of us is that consistent in what we do. Take care.
Literally just been told that I may have joint hyper mobility syndrome... seeing a specialist in 6 months time. 10 years of aches and pains and finally finding a possible answer!
I have hyper mobility too, I don’t have the syndrome though, but I feel your pain! I started walking at 2 and a half, which is a very late age, I had to get a blood test, then later I was diagnosed with hyper mobility. People always think I just sit out just to skip P.E, but actually I feel so sad when I have to sit out of P.E. Even the P.E teachers think I’m being dramatic by sitting out. About 9 months ago, when I was only 11, I tore my hamstring at athletics day because I had a lot of niggles at the top of my leg. I also strained my back, as I had a very hard fall when I tore my muscle. When I strained my lumbar spine, I got a trapped nerve. That caused me to have excruciating pain at night, near my ankle. I would always feel nauseous, light headed and weak, because I also strained my neck from going on my crutches too much. I had a slow recovery with my torn hamstring, as it took about 2 months to walk again! It has been going on since January! I went to the doctors and they couldn’t figure out what it was. They just sent me to a physio. I had so much lack of mobility, the physio even said that the average 12 year old could touch their toes, and I wasn’t close to touching my toes. Luckily, the physio found out I strained my lumbar spine. He is still currently giving me treatment. I started walking at 2 and a half, which is a very late age, I had to get a blood test, then later I was diagnosed with hyper mobility. I have also recently gotten a blood test to check if I have diabetes or low iron or B12, but the results were fine.
I stumbled across your video while searching for some perspectives on what my daughter is going through. I have always had better than average flexibility, but not to the extremes that you describe with these syndromes. 3 years ago she wanted to be a professional dancer. No she wants to go into physical therapy to help others like her, and has given up on her dreams for dancing. This father feels helpless as I can't make this pain go away. This is something that has altered my daughter's college selection process.
I've also recently began doing the carnivore diet, focusing on red meat, chicken thighs occasionally (breasts are too lean), and eggs. I have heard many stories about the carnivore diet benefiting inflammatory issues, and helping with joint pain. Have you heard anything about this in your search for relief or tried it yourself? Even if it's not 100% carnivore, I'm hoping that maybe a keto-type diet might be beneficial, with the reduction in sugars, inflammatory ingredients, and oxalates.
Ok crying now. I feel seen by hearing your story
Have you been tested for EDS? My friend started out being hyper mobile and was later diagnosed with Ehlers-Danlos.
I have not! I did have other blood work done though, and my rheumatologist told me that my results were "too normal" for it to be more of a concern at this point. But my aching body would beg to differ 😒😔 Maybe it'll end up being something like that later on though
You can't do any blood test for eds, it's based on the Beighton and Brighton tests, Google them and if you fit the criteria, go to a rheumatologist that actually knows about eds, because it definitely gets worse as you get older, I'm only 36 and feel like I'm 90, everything went massively downhill when I turned 30, and my 3 best friends also have eds and they have had the same issues. I'm trying to fund getting an electric wheelchair now on go fund me as I now can't leave the house without a mobility aid and I only have a transit wheelchair so I need my husband to push me. If I used a self propelled wheelchair, I'd dislocate my shoulders, elbows, wrists and fingers.
@@lissistar1 There is genetic testing for all 13 types of EDS except the Hypermobility type rn. 🎉
@@JulieGomez I was told the same thing by my rheumatologist until I (very carefully) flew solo and filled out the official 2017 diagnostic checksheet for the Hypermobile type. Took a lot of research on my own to make sure I was understanding the medical terms, but it was so worth it! After having dismissed me over and over in the past, she looked at that sheet and said I needed to start putting hEDS on all my medical info from that point on. Almost a year later that was reconfirmed by an EDS specialist. In the end, no matter what, the goal always is improved quality of life and access to care bec of any dx. That's happened for me. I hope it does for you. 💛 Last thing, check out the Ehlers Danlos Society website! They have all the current info and lots of useful things like a printable emergency wallet card.
@@lifealittledifferently yes sorry that's what I meant, for the hypermobility type.
I relate so much. Not been diagnosed yet, waiting on a rheumatology appointment but everything you say makes so much sense!!
Thank you for video. Finally I don’t feel alone.
I am 34 years old and the pain has finally reached a point where, well there are no words to really describe it. We were born into the situation and had no choice. I sure hope you do not progressed to my point. Good luck and one word of advice. Take it very very very easy the rest of your life.
Hey don im 25 and believe me when I say I'll probably be where your at down the road. Im scared ill be in a wheel chair in my 30s or something idk. The struggle is real though! My prayers are with you brother.
I eventually just started sleeping on the floor since no mattress was firm enough to make my body feel supported. I just use a yoga mat and a quilt folded in half instead and have been sleeping that way for 3 1/2 years now. I find that letting my body lay completely flat provides relief... it takes a bit of effort to switch positions since you have to use your muscles rather than just rolling over on a soft mattress, but your body gets used to it. Sometimes I skip the pillow (laying on back) and that helps too. It's a decision I definitely don't regret making.
I have all these symptoms. Definitely has gotten worse after having a baby!
I have been going to a really good acupuncturist the past few months and it has been helpful for loosening over tightened muscles that just won’t loosen with stretching massage etc.
Epsom salt baths, cbd cream sometimes helps. I take Benadryl sometimes to sleep, half of 25mg and it knocks me out for at least 6 hours. But there is grogginess in the morning and it can elevate your heart rate so not a long term solution. Sometimes light exercise like a stationary bike can help but can also make things worse so it’s a balance.
I’m still trying to figure out how to live with this but haven’t looked into it until now that the pain has gotten much worse. I’m 40 and have a toddler who sometimes demands to be picked up. It’s a physical job! Lol
I’ll look into the supplements you mentioned. Thanks! It’s nice to know I’m not alone and not the only one who has always felt old!
I have joint hypermobillity too (possibly eds I'm waiting to see a rheumatologist), and I have struggled getting comfortable in bed since I was in my early teens. My boyfriend bought us an ergoflex just before covid happened, and it has almost completely solved my issue of feeling uncomfortable, because you just sink into the bed completely and your weight is evenly distributed. I've never been able to sleep on my back, and I've recovered from several surgeries and had to lay on my back and it was HORRIBLE for my pain. I had my wisdom teeth out at the beginning of the year and had to lay on my back for a whole week, and I wasn't in horrible pain the entire time. I really suggest investing in a mattress similar to ergoflex, or made of that material
I can’t thank you enough for you video!
I have sticklers syndrome. My hips collapsed at 23 and 27 avascular necrosis. I too have a collagen/ connective tissue disease. Do you also have scoliosis? It's common which is why I ask. I feel you on the pain and life revolving around pain. If people don't get it screw them.
I have the same thing. Even in summer I bring a coat to go into a store. The switch from hot to cold is so painful and I can feel pain if I even have my wrist exposed and it gets cold. I sprain my body constantly. Noone understands because I seem ok sometimes. Its helpful hearing someone else struggles with something other people tell me they wish they had. Like being more flexible isn't a good thing. It's just constant agony
I really think I might have this but I've stopped going to doctors because they all tell me that I'm fine no matter how much pain I'm in everyday
TH-cam videos like this help me more than any doctors ever have
My hyper mobility does not help me in any sort of activity, I am still under 18 and I have issue with my joints. All of my joints are constantly aching, and when they pop out of place they swell and get really inflamed for days afterwards. It makes physical activity really hard, and up untill recently everyone just told me I was experiencing growing pains and the effect of growing. With physical activity I love taping my joints, using braces, I will take Ibuprofen if I need it, and what she was saying about the warmth really feels nice and relieves some of the aching.
omg same, sharp pain in the evenings...
and all the clicking 😵💫
Honestly I know what your feeling, I relate to more or less everything you've said and I've been feeling like this since I was 9 and I'm turning 16 in a couple months. "It's growing pains" my backside, it's so crap and nothing helps. No painkillers, baths or excersises or anything.
Thank you sooo much !!! ❤❤❤
I also have hypermobility. With daily chronic pain. I feel like a stiff robot and a 90 year old. I'm 38. I have always been flexible going back to maybe age of 5. But noone else in my family is, so I don't know where I get this from. I am also been checked for osteo or rheumatoid arthritis. My joints also dislocate very easily especially my toes, and fingers. Shoulders are painful. Knees. Ankles, wrists. Practically even joint is in agony. I was on Naproxen but I've decided to stop taking it as wasn't seeing much benefit. Painkillers don't work. Only thing I have found to reduce pain in my tens machine, and also joint creams with NSAIDS in them. Going to physio soon, so hope that helps.
You poor thing. I have it too and it took years and years to figure out what was the cause of the chronic pain and then what to do about it. This is the first time I heard about collagen and diet solutions. But I can tell you something that was a Ife saver for me in terms of pain was finding a great myotherapist. My muscles were so tight it was cutting off circulation and I was always getting more and more spider veins and myotherapy put a halt to that. Hope you've found relief. I also got some exercises from a great chiropractor (not just a clicky guy, he had experience with hypermobile ppl)...
Hi i am also diagnosed with this disease one week ago😢 its a very horrible pain i dnt know what to do my arms, legs, neck whole body is suffering
OMG. I have the same issue I’ve only gotten diagnosed recently after constantly dislocating my knee and having torn a tendon. I’m always In pain and yet I’ve recently done something to my knee and and In a lot of pain and discomfort. It’s really horrible at night all the pain and aching. Especially when you can’t sleep ❤️😔 I feel you 😔❤️❤️
I remembered that I was in the workshop in my school and always kneel on my knees cause I forgot about my condition and didn’t want to bother my teacher but I couldn’t do it anymore so until four years I explained to my teacher about my joints and why I have a difficulty standing very long
Hi, yes I can relate to everything you said. Except from the stretchy skin. Have you been checked for Ehler Danlos hypermobility type?
I also have IBS (irritable bowel syndrome). I totally agree with the way you describe it. Feeling like an old lady, tired to the bone, so called growing pains starting in my legs as a child. Now they have moved to include my arms and hands. I am 40 years old, I think I am done growing! My oldest daughter, aged 14 has been diagnosed with hypermobility spectrum disorder last week. I have yet to get my diagnosis, but to me it's obviously going to be the same. My youngest daughter, aged 7 is complaining frequently about pain in her legs, I hope she doesn't have this crap too.
Heat really does help. I have an electric heating pad and I got an electric heating blanket for Christmas. I love them! Highly recommend you get one. Love from Denmark
How are you now
I got a free diagnosis from a daughters appointment. She was diagnosed as having something like this. The doctor said,'You can thank your mother for that'. Tah-dah!
I have this same problem, except that several of my joints regularly dislocate as well :’3 I don’t have a diagnosis yet, but from all the studying I’ve been doing, Generalized Hypermobility seems to be what I have going on ;;;
Rhybread I don’t know if you’ve been diagnosed yet but do you have bad balance? I have hypermobility and basically my core is very flexible so I have very bad balance. I was late at walking and it took me ages to go on a bike properly. I’m trying to find some stuff to help me strengthen up my core because I’m an equestrian so I need to have better balance.
Amy Coogan I don’t have awful balance, but it’s not stellar. I do run into things a lot but that may be a reaction time/distance measurement issue rather than balance. I still don’t have a diagnosis :’3
I’ve been suffering with this for two decades and it’s just now finally been diagnosed! I take acetaminophen 8 hour arthritis medication and it helps a ton! Acetaminophen isn’t hard on the body like a lot of other drugs are.
I found your channel from your Vet Tech Q&A and I had no idea you had Benign Joint Hypermobility Syndrome! I have EDS which is similar! :)
Wearing a corset helped me a lot with back pain
I get horrid pains in my legs and arms and my back had hypermobile exercises NHS stuff not worked too well 😥
I hear you, it is tough… I know❤
I just got diagnosed with this today... omg you just described my life
Right... she totally described mine as well.
I am 32 and I just found out I have joint hypermobility syndrome and my orthopedic surgeon says my hips and knees are so loose that I need to start wearing a brace. I have not gotten enough sleep until I started taking 2 benadryl at night. I haven't grown out of this syndrome like they said I would
I also can't get sleep at all unless I take two benedryl, and have to wear knee braces! It sucks I'm sorry that you have to go through it too!
I have the same exact issue; my genuine sympathies, it sucks, but it's nice to know it's quite common
Same here, I just learned I have this. Also Raynaud's. It's like a mean ghost is in my body. Hope you're managing it ok. Very cold where I live :(
I was just diagnosed with this after ten years of being tested seronegative for autoimmune diseases. I ended up finally being examined and finding out after breaking my foot and having it never heal. It mostly affects my hands, hips, and legs.
Please do an update on your condition. Warmth also helps me too