Hi, I have joint hypermobility syndrome, among a few other chronic conditions. As I have a few causes for pain I can't say what it exactly feels like on its own but basically if you have a lot of joints that click and you get mild pain it could be a sign of JHS.
I have Ehlers Danlos Syndrome, still determining what type, as my family history indicates more type I/I whereas I am more hypermobile than the rest of my family. I feel pretty awful daily, I've had chronic pain since I was a child, my shoulders and hips are both shot and I'm only 24. My right shoulder doesn't stay in the socket, I have frequent hip subluxations and have sprains at least once a year in my ankles, knees or wrists. My usual pain pain level daily hovers around a 6, very few medications work on me for long, or at all, for pain. I also have reproductive health issues, I just had my tube removed from an ectopic pregnancy that almost ruptured. I had severe pain and horrible digestive issues with my two (of my 6 pregnancies) daughters.
I had severe pain that helped lead me to multiple (failed) suicide attempts as a teen, and I was also hospitalized in high school for self injury and another suicide attempt. (Just touching on the mental health issues of EDS, I do not have many issues with my mental health anymore.) Everyone with JHS/EDS has different issues, I could go on and on about mine but you wouldn't wanna read that! :)
I am so sorry for the enduring pain you face. I can't imagine what you go through daily and I also marvel at your strength. I have been dealing with a hypermobile thoracic spinal segment right at the level where I suffered a sprain and ultimate ligament laxity in an inter spinal ligament that is stretched and not retracting. It causes all the muscles to be turned on in order to hold my spine. This has caused muscle fatigue, spasms and muscle failure in my back as well as nerve pain. This has been a nightmare yet I realize I am blessed and only wish all good things to y'all who are suffering. 💐
I hEDS otherwise known as Ehlers Danlos syndrome type 3. Also known as joint hyper mobility syndrome. I too am in daily pain.
As an infant my shoulders started dislocating. When I was in second grade I broke my arm and third grade my leg. I sprained my ankle several times a year, every year, since then. I'm 44 now. Last year alone I tore my rotator cup shutting the car door, sprained my knee putting cinnamon rolls in the oven, and dislocated my ankle walking down the hallway. My thumbs bend all the way to my arm, top side and bottom side. My knees bend backwards. All of my fingers bend more than 90*. There's not a spot on my back that I can't reach. I can bend over and put my hands flat on the floor without bending my knees. When I was a teenager I could cross my feet and put my palms flat on the floor without bending my knees.
Any way to answer your question, yes there is pain involved! There are days I ache so bad all I can do is cry. I have days I can't lift my arms because they hurt so bad. My knees snap, pop, and crunch when I walk. I'm in so much daily pain that when I fell in the woods it was over 24 hours before I realised I had sprained my ankle, knee, and hip. I walked out of the woods after having fallen on a pile of sticks. I even put in half a days classes before the pain caught up with me and I spent the next week on crutches.
I have been known to not sleep at night because if I relax too much my shoulder pops out while I sleep. My hip pops in and out when I walk. I can not stand for more than a few minutes before my back starts hurting. My fingers don't have enough grip to hold a pencil long enough to draw a portrait anymore.
Gee, I hope that doesn't depress anyone because it's not ment to! I wouldn't wish hyper mobility on anyone.
I've broken ,legs arm shoulders ,fingers toes ,mmmmmmm what have I've not broken would be better it put down what I've not broken ,as for the dislocated bits my neck a good one and most painfully little finger , I can cope with most of my body popping out ,and I can put most back in ,but not my little finger ! Don't know why ? But boy it bloody hurts to put back in !
I've been diagnosed with sacroiliac joint hypermobility, but my hips and shoulder dislocate frequently as well. When I asked my orthopedic doctor and physical therapist about it, they both told me that taller people tend to dislocate more often and shorter people tend to break bones more often. That probably doesn't help you, but I thought it was kind of interesting. I hate SI joint hypermobility. It's extremely painful. Even the slightest shift in balance or position, like driving over a speed bump, can shoot pain down my legs.
Have to say iam only 4ft 11 ( just ) don't think height has anything to do with it , by the way I've just been told I have osteoporosis as will as jhm eds ( v11c) is not the same as jhm ,eds is to do with the skin and mending of the skin ,jhm is bone and joints ,
http://ednf.org/ This is one of the best informational pages for EDS (Ehlers Danlos Syndrome) that I have found. The mending of the skin is only a very small part of EDS. Many doctors are still arguing over the differences between EDS and JHM. Many are now saying there is no difference, some are saying the difference is whether you dislocate or not. Some are saying, as you were told, if you don't have skin involvement you can't have EDS. I've also noticed that it depends on what part of the world you are in, what doctors are taught about it.
There are now considered six types of EDS (I guess they have grouped some of them together into "classical" and did away with others?)
I also have osteoporosis, as well as many, many other comorbidities. EDS is defective collagen. "Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue." (ednf.org). Therefore EDS can affect any part of the body including, but not limited to, digestion, ligaments, tendons, bones, excreta.
I have hyper extension in all my joints, but my son who I adopted at 20 months of age will be 9 in a week. He is hypotonic, zero body fat & can do anything with his body! Very hyper mobile. He was diagnosed with Autism, high functioning but was born at 33 wks & birth mother used cocaine & had placenta previa. He had oxygen loss during pregnancy & birth. I worry about his joints as he grows. We have done orthothotics, OT & PT. Try to keep weight on him & build muscle tone, but it is challenging!!!! With my pain & joint inflammation I truly worry about him.
Yep. I'm kinda on the mild? end of things (diagnosed with bjhs recently). I've been having more noticable problems with many joints on and off for about 8 years (in my mid20's now). Not an inflammatory arthritis though, i was throughly checked! It has been best when i regularly exercise and maintain good amounts of balanced muscle. But I got quite sick last year and lost a lot of muscle mass. My daily/weekly issues: moderate to intense pain in knees, hips, ankles & fatigue after walking for about 30min, very crunchy elbows getting "stuck" (subluxed) multiple times daily, my hip/back goes out of order causing shooting pain and problems walking, mild aches around many joints, and slow transit in my bowel (sometimes the worst part). Previous significant issues: trochanteric bursitis, shoulder instability, si joint being super unstable, and my stomach went on strike for a few months.
I have hypermobility. It's pretty easy to check. My elbow and knees are quite hyperextended, but it's mainly my lower limbs. Because of JHS, I get injured very easily (fractured foot, many many sprains, and dislocated my kneecap twice). It's usually mild pain here and there but it gets a little annoying. Right now I'm down with posterior tibial tendonitis and ankle flexor strain and recovering from kneecap slight dislocation. You should get it checked if it's bothering you. I am under a Rheumatologist and a physiotherapist that prescribes exercises to help reduce the pain. All the best to you!
Just saw a rheumatologist for the first time last week. She pointed out that I have hypermobility in my fingers and wrists. I suspect my back and neck as well. She did note that my knees and elbows aren't hypermobile. Did some blood tests and x-rays in reference to possible RA but I don't know much yet.
Don't know of anyone in my family being hypermobile. It would make sense with some things though. My wrist comes out of place easily, I've had an AC joint separation in both shoulders, my ankles have always been very weak and sprain easily.
I've never dislocated anything fully though, as far as I know, and I don't seem to have any skin involvement.
I have hypermobility Ehler's Danlos Syndrome or hEDS. It means I'm really flexible, I can easily do the splits and my elbows bend backwards. My fingers go out of joint when I'm writing and my ankles and toes crack when I walk.
I'm in extreme pain all of the time. I honestly have no clue and I can't even imagine what no plan is like. Literally every part of my body hurts all the time. My joints are the worst though. They thankfully don't dislocate (except for my fingers and toes (okay my ankle once)) but they are still very painful. I have to crack them all the time because if I don't it's ten times more painful. I am fairly mobile, but I'm still pretty young. (15) Almost all pain meds have stopped working for me, so I have little to no relief.
I have to be homeschooled and I can't eat many types of food because of my IBS. (which sucks because I love food!) I can never play laser tag, go iceskating, Or play paintball. I can't do gymnastics, bungee jumping, have a normal job, and I can probably never have kids. I live in poverty, and I can't be a doctor or a scientist.
I usually try not to get down about all this though. Because all the things that I can't do don't matter, it's what I can. I can go swimming, hang out with friends, go to themeparks, movies, arcade, ECT. I have three amazing little sisters (including my twin who is 3 minutes younger) and I have lots of pets. (30 cats (we breed them), one lizard, two dogs, 30 chickens), I live in the beautiful country, and so much more.
I don't let this disease get me down cause I'm a fighter and a warrior. Yeah, it's horrible, but I could mope and complain, or I could fight. I choose to fight. I'm a warrior and I'm proud of it.