Patient Comments: Hypermobility Syndrome - Symptoms

Question:

What were the symptoms of your hypermobility syndrome? Submit Your Comment

Comment from: Bev, 45-54 Female (Patient) Published: July 27

My patellas are both very loose and I have had about 16 surgeries. It wasn’t until I was 40 that I had an MRI, and my surgeon discovered why they are so bad. I have no groove in my femurs for my patella to track on. It is completely round. I wonder if this too would be a feature of hypermobility syndrome. My elbows also pop out, as do my shoulders. It is really annoying. I try to keep fit but my legs hurt. I am limited, so I took up kayaking. Great for my arms and easier on my knees.

Comment from: Angelsquestion, 55-64 Female (Patient) Published: November 07

As a child I was able to make my body into a pretzel. As a kid hypermobility is fun but not anymore. My knees are bad, hips pop out of joint and sprained ankles. I can take thumb and shoulders out of joint. Arthritis has set in all over but turmeric helps with the pain. Never knew this was a syndrome. Found this. All my joints are loose and my daughter has it too. I never was diagnosed. I was always a klutz. My knees and back are really bad.

Comment from: Alison, 25-34 Female (Patient) Published: August 07

I have extra 15 percent movement because if my hypermobility syndrome. My knees click a lot and I have a painful left knee. I also have severe back pain.

Comment from: Angela, 19-24 Female (Patient) Published: July 19

I have severe abnormal hyperextended joints, severe joint pain, and dislocation to my ankle, knee, hips and shoulder from hypermobility. I was diagnosed with moderate scoliosis. I have abnormally stretchy skin and it bruises very easily. Decreased mobility.

Comment from: Annemarie V, 55-64 Female (Patient) Published: May 21

The above article doesn't mention the additional problems I have caused by joint hypermobility syndrome (JHS), namely bladder weakness from childhood (I now have mesh inserted), heart valve deformity and much enlarged pulmonary artery with associated heart chamber enlargement, and digestive problems. JHS is much more than joint problems.

Comment from: Inquisitive, 19-24 Male (Patient) Published: April 11

I've always been extremely flexible, and am still able to touch all of my fingers to their associated forearms, touch my palms to the floor while knees are extended, bend both thumbs well over 90 degrees in both directions, etc. The only issue I've run into that could be related to this is my pinkie finger getting 'stuck', where it felt like the tendon would get caught and I would be unable to move it without manually straightening it with the other hand.

Comment from: JanetSinnott, 65-74 Female (Patient) Published: February 21

I've had symptoms of joint hypermobility syndrome since a teenager. I am now 65 and up to 10 years ago I was misdiagnosed over and over. It has gotten worse over time with symptoms of sublimation in hips and knees. Major and minor joints are extremely painful and I take opioid medication to help. They bring down my pain level from 8-10 to 4-6, depending on my activity level. I have started bracing, mostly back, hips, and knees. I have also been diagnosed with fibromyalgia which I've learned is common.

Comment from: Helen, 45-54 Female (Patient) Published: February 19

My grandmother dislocated both hips giving birth, she was that loose. Her daughter, my mother has the ability to put her thumbs to her wrists, and loose hips. I have hypermobility syndrome in my hips, ankles and one finger joint. My kids all three have it in their hips, one has odd shoulders and for one all his finger tip top joints bend backwards. Only my thumb joints do.

Comment from: Crisco, 45-54 Male (Patient) Published: January 18

My hypermobility joint syndrome (HJS) moves from one joint to another. It stays in a joint for 3 or 4 months, and it's usually bilaterally and when it leaves it usually damages the ligaments or sets up arthritis. My ligaments gets tight and pull or break. I have had my right shoulder replaced, I have a torn ligament in my left shoulder now, I have had my ACL (anterior cruciate ligament) replaced in my left knee, and my right knee had an MCL (medial collateral ligament) tear. I have degenerative disc disease in my lower back and neck, and arthritis in my ankles, hands, shoulders and elbows.

Comment from: Kate sarge, 25-34 (Patient) Published: December 20

My hypermobility is in my entire body, I've dislocated both of my knees and nearly my left hip. All my joints ache in the cold and can stretch a lot further than others. My elbows hyperextend, also both knees. All fingers bend backwards to at least 90 degrees. I'm tired a lot. I also have a mitral valve issue which through my own research is a symptom of hypermobile Ehlers-Danlos syndrome, which is a type of hypermobility.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: Gracefully , 19-24 Female (Patient) Published: December 13

I recently turned 20 a couple days ago and was just diagnosed with hypermobility syndrome resulting in patellofemoral pain. I have had joint pain all my life and I would cry in at night from the pain I felt in my knees especially and my ankles, hips, and hands. I always thought no one believed me that something was wrong and that I was being dramatic. I am so happy that a doctor finally noticed, knew what was wrong, and can work on preventing pain. I am so happy I know now today.

Comment from: Paul, 45-54 Male (Patient) Published: November 13

With hypermobility syndrome I have torn shoulder, back and knee pain, ankle sprains, depression and anxiety.

Comment from: Dee58, 55-64 Female (Caregiver) Published: August 28

I've suffered with constipation and then the other way. I have spells where I have to lie on the floor sweating and unable to move, until my bowels have emptied. Also unexplained pains in arms fingers and knees. I am 58 and can still do the split. After all these years they're just finding out now that I have hypermobility syndrome.

Comment from: Stareagle, 55-64 Female (Patient) Published: July 31

My symptoms of hypermobility syndrome are arthritis, sprains and dislocation.

Comment from: I4C, 55-64 Female (Patient) Published: July 24

I read all the comments on hypermobility syndrome and I relate. I've had 13 surgeries: feet, ankle, knee, shoulder, elbow, and wrist. I have degenerative disk and joint disease, hand contracture, fallen arches and migraines. Good times.

Comment from: LyndaB, 45-54 Female (Patient) Published: January 03

Joint hypermobility syndrome is much more than just loose joints. The flexibility extends not only to the ligaments and tendons, but also to the muscles (which includes the heart). Side effects include feeling tired all the time because of low blood pressure, susceptibility to frostbite of extremities in cold weather (due to the gaps in joints), heavy periods, migraines, and low blood pressure, so low that your heart races if you stand up too quickly because you'd faint otherwise, to name a few. I've had it all my life, and it has not gotten less with age, it's gotten worse, I am still as flexible as I ever was, and the side effects are taking a greater toll the older I get. This can be a very serious condition for some people who have extreme flexibility. Doctors need to be aware of all the other side effects that occur with this syndrome, so they don't misdiagnose some of the side effects as vitamin deficiencies, hormones, or some other incorrect assessment. Unfortunately, very little research has been conducted on this topic.

Comment from: Female (Patient) Published: November 28

I am 18 years old and was diagnosed with joint hypermobility syndrome at the age of 13. I suffer from shoulder dislocations on an hourly/daily basis and quite often end up in hospital to reduce my shoulder. I have constant pain in all of my joints. I haven't been able to take part in sports for years and have had to drop out of college due to the frequent dislocations. I have been doing physiotherapy for the best part of 5 years and am now just waiting to 'grow' out of my condition. I have given up trying to cure my hypermobility and just focus on my quality of life.

Comment from: Flexible, 55-64 Female (Patient) Published: July 29

I have always been very flexible and can do all the 'tricks' but have not suffered with any dislocations. I have always been sporty and continued with gym after my school years. I stopped doing heavy squats after my knee tendons ruptured, I always have shoulder injuries and currently I am dealing with lateral epicondylitis; I will have ultrasound next week. A few things I have noticed that are possibly related to hyper mobility syndrome: nails and hair grow very fast but nails are thin and bend like plastic. No episiotomy at both child births (there's a plus for you) and another. I am never constipated although stools can be thicker than average (too much information), IBS (irritable bowel syndrome) from too much fiber, and hands often ache. My children are also flexible and one has scoliosis. Not for the faint hearted. My heart goes out to all those with worse symptoms.

Comment from: JoJo, Female (Patient) Published: April 26

As a child I was always spraining my ankles, and my knees constantly hurt. I could lick my nose, put my toes in my mouth, bend my thumb back to my forearm, and straighten my fingers so that they bend backwards. Very easily touch the floor flat handed, without bending my knees. Roll my ankles half way around with turning my knees. Playing high school sports in the 1970s I had both ankles and one knee taped all throughout 5 years of sporting events. In the early 1980s my orthopedic doctor said I had loose joints. I had my first ankle reconstruction surgery in 1983. That ankle needs to be done again. My left ankle has been reconstructed twice and needs a 3rd surgery. My knee caps float, I have torn my ACL (anterior cruciate ligament) several times not knowing I had done that twice as I was so used to knee pain. I have had Maquet procedure on the knee until eventually when I will need replacement. In 2009 my ankle surgeon advised in the office notes that I have hypermobility syndrome. Recently had elbow surgery for lateral epicondylitis and possibly will need another surgery lower down the forearm for muscle squashing the nerves and tendons. Walking on flat surfaces I can easily sprain an ankle where there are cracks in sidewalks. I have just always taped my knees and ankles and lived with the pain. Nearing the late 50s I just wish I was told this in high school.

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Comment from: Confused, 19-24 Female (Patient) Published: July 21

I'm 19 years old and I was just diagnosed with joint hypermobility. I have been a dancer all my life but at around 14 I started suffering with extreme joint pains in almost all of my joints. I stopped dancing and saw a doctor. He sent me to a physiotherapist and they just said I had pinched nerves. It has been 5 years since then and I have been to many different doctors with all saying I had arthritis. I saw a rheumatologist who took one look at my joints and then told me I had joint hypermobility. Along with the hypermobility I suffer with extreme pain and often have dislocated joints and sprains. Now I just need to learn how to manage the syndrome.

Comment from: 35-44 Female (Patient) Published: January 30

I've always known I was hypermobile, just didn't know it was a syndrome until now, and I'm 41. I've had 2 labral repairs in hips and one in shoulder, as well as a shoulder fixed for multi directional instability (capsule was loose due to recurrent subluxations). Also, my SI (sacroiliac) joint has been basically in but mostly out for about 10 years now, and my L4-L5 disc has torn twice. Now finally I am in physiotherapy with someone who has hypermobility syndrome and specializes in it. She is teaching me all kinds of things. I feel so much better after only a couple of weeks. She's given me stability exercises such as kneeling on a physiotherapy ball for a minute, and elliptical with no arms to increase core stability. Lots of stability exercises and SI mobilizations I can't explain here. She also told me no stationary bike for now because the seat is not big enough and SI tends to slip. She told me all my gymnastics and dance growing up was bad for me. And no more stretching, no yoga and no Pilates. I've had multiple doctors and therapists tell me no yoga and no stretching, but Pilates is great for me. Apparently not.

Comment from: flexible but hurting, 45-54 Female (Patient) Published: July 17

I always thought my chronic joint pain from childhood and herniated discs (3 spinal surgeries already by 45) were due to childhood obesity and carrying too much weight. One of my surgeons said I had joint subluxation (I could never play the piano like my older siblings due to 'Gumby-type' fingers. Parents were very old when I was born too) and so subluxation and being double-jointed/hypermobile makes sense. Within the last two months, my right hand's thumb joint (1st (MCP) metacarpophalangeal) has been acutely painful and today the flexor tendon is not passing through the sheath. Orthopedic surgeon has me scheduled for 'trigger finger' surgery for 8/1. The MRI reveals acute sclerosis, arthritis and osteophytes around that 'dislocated' MCP joint suggesting that the joint movement has irritated the tendon to be highly inflamed and edematous. The hand surgeon wants to cut the sheath to allow the tendon to pass. I shared with him that my left shoulder has the exact same hypermobility syndrome as well as my left great toe joints, both hips and most of my spine... chronic pain which I have simply tolerated. Now that I can't function well or write due to extreme pain (since I am a righty) I feel I have no option but surgery.

Comment from: VoyagerSeath, 75 or over Female (Patient) Published: June 13

I have been hypermobile all my life. First I had dislocation in small bones in left foot; then many sprains, etc., and frequent muscle spasms in different areas. Three years ago I had left patella dislocation, 10 years ago I began to have a very loose right hip, which is now a permanent condition. I have always kept moving, but normal exercises and physiotherapy are dangerous for me. I am now aged 70 plus. My main problem is the very frequent episodes of overall muscle weakness, joint pain, and fibromyalgia type pain. Now I am finding it difficult to walk without tri-walker support; in the past muscle weakness might last 1/2 days whereas now it seems permanent. There are many other little symptoms like poor digestion, easy bruising and last but not least, incredible speedy labor with each birth - barely making it to hospital in time. First diagnosis was from a German physiotherapist in the mid-90s. I do remember my mother suffering almost the same symptoms and pain with many stints of bed-rest without any medical explanation despite hospital intervention. My sister was frequently immobilized with ankle and wrist sprains. One of my sons has the mitral valve prolapse.

Comment from: Baltimore gal, 25-34 Female (Patient) Published: November 27

I was recently diagnosed with hypermobility. I can do all of the parlor tricks associated with it. What I didn't know is that my kneecaps do not move because of this. The ligaments and muscles run diagonally across the knee. I also have ulnar nerve entrapment on both arms. I tried 2 different surgeries on left arm with no success. All muscles are atrophied beyond repair - palm is flat, missing muscle in between thumb and forefinger. Right hand is now following the same downward spiral. The orthopedic doctor said that this is caused by the hyperextension and that the impingement is inevitable and unlikely to respond to therapy or surgery. Not looking forward to losing right hand as well, but it is deteriorating fast. I am not getting surgery for this one - thousands of dollars wasted on a condition that cannot be fixed. I might as well avoid the long scar down my arm this time.

Comment from: 19-24 Female (Patient) Published: November 06

I was told that I'm hypermobile when I was 21 by a physical therapist after a judo injury (torn rotator cuff, winging scapula, and some nerve damage - all from an accidental knee to a nerve along my ribcage). I wasn't diagnosed as a child because I've always been a tall and heavy girl, so my doctor would say that while I'm surprisingly flexible for my size, any joint pain or dysfunction was due to my weight. (Never mind that most of my symptoms presented themselves before I was even 10 years old). In addition to the easy judo injury, which still hasn't fully healed after several years, I've bruised bones (three in my wrist a few years ago, also not yet healed), had more sprains and twisted ankles than I care to remember, and frequently have things move ever-so-slightly out of alignment. On an average day, I 'pop' my shoulder back into place several times, 'roll-out'/rotate/stretch my wrists and ankles, and check the small bones in my hands and feet to make sure that they didn't dislocate while I was sleeping (which has happened a couple of times - apparently I thrash around). When I told my sister (who is very flexible, but apparently not hypermobile) that my hips and knees are sometimes too 'loose,' she told me that she didn't see how it was possible for them to be too loose. I tried to explain how it can make even such simple activities as walking difficult, especially when they loosen up suddenly, rather than having a day when I just woke up to them like that.

Comment from: Dani, 35-44 Female (Patient) Published: November 06

I have always been a klutz and have always twisted my ankles and done something to my knees. I have a matching set of air casts for my ankles as well as a set of custom braces for my wrists due to repetitive injury strain. I have also had multiple issues with my knees causing pain and my knee caps moving out of alignment to the outer part of my leg. The last specialist I saw told me "I know something is wrong with your knee, but can't figure out what is wrong with it." It was nice to have a doctor tell me it wasn't a muscle imbalance or that I needed another round of physical therapy. I was injured at work and pulled the tendons in my lower back. My Physical Therapist told me I had "loose tendons" and that was why I kept injuring myself.

Comment from: MomofNoah, 3-6 Male (Caregiver) Published: May 09

My 3-year-old son was diagnosed with hypermobility a couple months ago. He was having difficulty walking and running so he was referred to a physiatrist at a local children’s hospital. The doctor said that not only were his feet very hyponated (rolled in) but he was extremely flexible, or hypermobile. He showed us by folding our son's hand under toward his arm and showing how his fingers easily touched his forearm. He said to avoid heavy contact sports or anything hard on joints like gymnastics as it could easily hurt his joints. Tumbling class was fine, just nothing high impact. He also warned us that our son may prove to be uncoordinated because of this but it's not always a guarantee.

Comment from: Sue, 45-54 Female (Patient) Published: January 12

I am 49 years old and been "double jointed" all my life. My fingers could bend backwards 90 degrees and I can make my finger joints lock in weird positions. My wrist bone keeps popping out, but I can usually tell when it is about to and can sometimes prevent it. Within the last year my knee bones have been popping out, causing me to buckle over as I am walking. Doctors said it was arthritis, but I knew it wasn't. After popping out in the left knee, I was afraid to trust it so I started going to physio. The other knee went out while walking up the stairs and I went straight to my physiotherapist so she could diagnose it. As soon as she said my tendons are loose I knew they were popping out. I still do not trust myself on uneven ground but am learning to pay much more attention. I have also been having great pain in one foot and am wondering if that is what caused it.

Comment from: lmitch63, 45-54 Female (Patient) Published: November 21

I have been looking for an answer to my problems and I believe I have found it. I have always been able to bend my thumbs back to touch my forearms. A hand surgeon even took a video of it. As a baby, my parents said my feet were always in my mouth, which explains why I have to move a certain way to pop my hips, because they get very stiff. My knees have always bent backwards and now I have difficulty sitting for periods of time because of stiffness and pain. Also, my wrists are very hyper flexible and get very stiff and I have to shake them to pop the joints. My back is also very stiff and I have to touch the floor with my fingers to hear the popping in my spine.

Comment from: Holli, 25-34 Female (Patient) Published: November 03

My symptoms were hyper-extension of several joints. Also, I have pain in my ankles, knees, hips, fingers and shoulders. I can't sit or stand for too long or my hips will pop when I get back up and sometimes my ankles will buckle under my weight. In the morning, if I tossed and turned or laid on my side, my shoulders will be in pain and I have to pop them to stop it. Every time something like this happens, I have inflamed joints. I have back problems. I was 22 when I was diagnosed. They sent me home with pills and basically told me I'd be on them for the rest of my life. I refuse to accept that and live my life everyday fighting it.

Comment from: 55-64 Female (Patient) Published: March 02

This article describes my personal conditions to a tee. However, what is missing is how all the dance, sports, yoga instructors in my life knew nothing of my hypermobility syndrome until I came to study yoga as a mature adult, where they suggest alternative instructions for every yoga position for people with hypermobility; essentially to think of pulling in joints rather than stretching, as a means of achieving correct postures.

Comment from: monkey7, 13-18 Female (Patient) Published: August 08

I got diagnosed when i was a baby but know i suffer almost all the symptoms. I've had surgery due to it and I can’t really exercise. I've been like it since was little, and it was just obvious because i had/have 95% of all of the problems, i think I'm like 113 years old because I've had plastic surgery 3 times and so on. I always get bugs from school and I am constantly ill. I try to be healthy but it isn’t helping. I even used to do yoga with my mum since i was 1 yrs old, so i don't know much more.

Comment from: TJ214, 35-44 Female (Patient) Published: April 16

I read that (severe forms of) Hypermobility Syndrome have been reclassified as (mild forms of) Ehlers-Danlos Hypermobility Type. So if one was diagnosed with HMS, like me, then one has EDHS. I have other symptoms as well, like the mitral valve (prolapse); the blue tint in the sclera (eyes); atrophic scars; ganglions; chronic dislocations and sprains of ankles, knees, and jaw; intractable hip pain; and intractable joint pain. I don’t have the skin involvement, although I have the atrophic scarring and I bruise easily. I also have chronic insomnia, and when the weather is bad, it's bad for me. I feel for everyone posting here, I could live with the joint locations and everything else, if only the pain wasn't there. It's hard, too.

Comment from: tina, 55-64 Female (Caregiver) Published: April 02

I am in my 60s and this is the first time anyone has been able to diagnose the condition. I can still do leg splits, which doesn't hurt, nor does putting my head to my knees in a sitting position on the floor with my legs outstretched. It is a relief that all of my joint pain, labral left hip repair, fibromyalgia, thin skin, spontaneous-ruptured foot tendons, and fractures all fall under this one syndrome. I have been exercising for more than 50 years, and my physician said to keep doing what I am doing, although I no longer do weightlifting. My current exercise regime is to do cardio (i.e. elliptical), weights, stretching walking, meditation and yoga – all three times per week.

Comment from: BalletGirl94, 13-18 Female (Patient) Published: January 03

My knees are ridiculously hyperextended (as in curved backwards). I can lock my fingers, bring my thumb all the way to my wrist, bend my fingers 90 degrees backwards, etc. I'm a ballet dancer, so the extra flexibility has always been an advantage. For example: I can bring my head between my knees easily. However, I do get injuries a lot, especially sprains in my knees and ankles. I hear clicking almost every time I move a muscle. Overall it's not always great, especially with the injuries, but it's doable.

Comment from: MoaningMarianna, 13-18 Female (Patient) Published: November 19

I am a 16 year old girl. I was diagnosed with hypermobility syndrome two years ago, but have always had regular hospital trips because of dislocated knees, pulled elbows, twisted ankles, sprained wrists, the whole works. Since being diagnosed by my physio therapist I have been referred to specialists in London because simple exercises to strengthen the ligaments round my left shoulder have made my shoulder dislocate before I can really get to work on getting myself strong. In the past year my shoulder has dislocated without cause in various lessons at school and randomly at home. The specialist referred me back to physio (pointlessly) so I’m starting to feel as if nobody is taking me seriously, I genuinely find it difficult to get through a day at school, my attendance is 75 percent at school because of all the hospital appointments and what not.

Comment from: smalldafty, 19-24 Female (Patient) Published: October 27

I was always sore, sometimes I couldn’t even walk up the stairs at work (I’m only 21). It was causing me great deal of stress and felt much older and weaker! My back often got so sore that I could hardly move.

Comment from: tricky, 35-44 Female (Patient) Published: July 30

Both myself and my 15 year old daughter have hypermobility. As a result I have a ruptured ACL ligament in my right knee and my left is very stretched. I always guard my knees and very cautious of where I walk. My daughter suffers from hip and knee pain that restricts her playing sports, to my dismay my son has recently been suffering severe foot pain. I have read the articles here to see this may be as a result of hypermobility also.

Comment from: J.O, 13-18 Male (Patient) Published: January 06

I was diagnose with hypermobile a few weeks ago because by moving my arms my shoulders would pop out, my hips where popping out also. Throughout my childhood flexibility wasn’t any problem but when you grow older it gets too you and you start having issues like constant pains in the back. I now see chiropractor and they try to make it better but I don’t seem to see any difference. Sometimes you just wish to be normal and do things because right now my limits are pretty low and tiredness follows right after each day.

Comment from: Mother of 3, 13-18 Female (Caregiver) Published: October 05

All 3 of my children have hypermobility syndrome but they suffer from significant digestion/stomach issues (cramps, nausea, reflux, vomiting) and significant sleeping issues (difficulty getting to sleep, waking early hours of the morning and not being able to get back to sleep). I found a report indicating this is relating to "stretchy" tissue in the stomach and blood vessels.

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