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Hypermobility Syndrome

Also known as Ehlers Danlos Syndrome

All discussions in this group

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  • Possible heads?

    I am 53 years old. Was and still am hyper mobile since childhood. Was diagnosed with scoliosis at 12 years of age, bruise easily, soft skin that is somewhat elastic, numerous subluxations with tendon and ligament tears of knees and wrists, scarring of skin, Rhynauds, and bursting of blood vessels in...

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  • Ankle Instability

    I was diagnosed with hEDS when I was 14 after multiple finger dislocations which lead to surgery. Prior to this I was just deemed as 'double jointed' or very flexible because I did gymnastics Fast forward a few years and I seem to be struggling with my EDS more and more. Recently I landed short...

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  • Phantom smells and weird feelings in head

    I was just wondering if anybody else has experienced this? I have been having these really weird feelings in my head. Kind of like the room spinning feeling you'd get after one too many. Also if it's quiet and there's a loud noise it is like a firework has gone off in my head and takes me...

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  • Ordering shoes/boots

    Been diagnosed with hydermobility syndrome at age of 42. Went to see Bio Mechanic and lady has asked me to go away and get couple of pairs of shoes and come back so she can fit some supports . She said they must  fasten on top and had a bit of a heel. Any other advice would be great, thanks 

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  • Hypermobility Syndrome or EDS?

    I understand that these two syndromes are very similar (depending on the type of EDS at least) but I'm wondering if my symptoms match up more with hypermobility syndrome or EDS. My elbows, fingers, thumbs, and shoulders all bend beyond the normal range. I get heart palpitations and recently got referred...

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  • Hms has ruined relationship

    I am not the hms sufferer I am the partner of 25 years. Partner has had various problems causing pain and multiple surgeries for 15 years...only in The last year a physiotherpist diagnosed hms. I have tired to be supportive and have always been the one to find new treatments to try or information. As...

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  • Ongoing discomfort behind knees

    I'm posting this under hypermobility although I'm not sure if my hypermobile hips are the cause of this or not.  Anyway. For the past few months I've been having this on and off discomfort behind my knees. Its not exactly pain but it's super uncomfortable; it makes me want to pull...

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  • Constantly spraining my joints, don't know what to do anymore!

    Hi, I'm 24 and have only realised I have Hypermobility for the last 4 years or so. I have very weak joints and it's becoming a big issue in my life. I work as an actor and drama teacher so my work is active, but I am constantly spraining my ankles especially. It's incredibly painful and means...

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  • Help with blood results

    Hi I have EDS type 3 and have been diagnosed for 14 years (No support). I am 32 years old. I've been recently diagnosed with POTS and have begun treatment for this but as part of that I had some bloods done and I am concerned at some of the results. I know none of you are doctors but I wondered...

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  • Physiotherapy exercises

    I'm 18 years old and was diagnosed with Joint Hypermobility Syndrome when I was 10. However I have not been physio or doctors in relation to this since then, and fear my condition has become worse, especially as when I was younger I did not make an effort to do exercises given to me by the physio....

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  • Is eds localized?

    Ok, I have full body symptoms of eds.. but my thoracic area feels dead and it's spread to my ribs and is now itching but no rash.. I believe I have pots and mcad.. if it's eds.. I have joints cracking and popping, from my head to my toe, muscle weakness along with it, trouble swallowing with...

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  • Need some friendly support? - Shall I start my own blog?....

    Hi all,  Some of you may have read some of my discussions, I have Hemiplegic Migraine, Hypermobility and just had a recent diagnosis of Fibromyalgia. I know 'patient' is like a blog, and is a brilliant site to help support people, however I wanted to write my own personal blog about how...

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  • Hypermobilty syndrome and surgerys

    *PLEASE READ AL* I'm 17 and have hypermobility and getting tested for Ethler danlos syndrome. I can walk but with constant burning in my ankles and I tear my quads and calfs all the time with a piping sensation. Iv had acl surgery and my muscle stitched in both knees and I regret the acl I haven't...

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  • Bladder infections??

    My daughter was diagnosed with hypermobility 6 weeks ago. 2 months before the diagnosis after months of all gastro tests she had surgery and they found adhesions, no medical reason for these. She's getting bladder infections frequently. Is there a connection? Since a toddler she's suffered with...

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  • Hypermobility and choice of shoes?!

    Hi, I am a 23 year old female and just been diagnosed with JHS and mild scoliosis. At my last hospital appointment I was told I need to change my footwear and buy 'proper' walking shoes that support my feet. I experience a lot of knee pain and currently have fluid all around my knee. I tore my...

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  • Constantly Hyperextending

    I constantly hyperextend my knees and elbows by things that really shouldn't hyperextend them. For example, I'll be walking to class and all of a sudden my knee will just bend back too far and I'll get a sharp pain. At first I only used to do it on the trampoline, but in recent years my hyperextensions...

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  • Shoulder surgery with Hypermobility

    On October 20th I had shoulder surgery arthroscopic subcromnial decompression and bicep tendonisis. I have just reached my 6weeks post op and attended my second physio yesterday. I have never been in so much pain. I find it hard to get comfortable. I've always had hypermobile joints but as a child...

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  • Joint hypermobility syndrome and ankles

    Hi, I was just wondering if it is a common symptom of JHS when you start running and both your ankles and lower legs go extremely weak all of a sudden and they go over on themselves, basically feeling like they're out of control? I was running at a Robbie Williams concert and this happened. It's...

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  • Intercostal muscles/rib pain.

    Has anyone ever pulled their intercostal muscles between ribs due to having hypermobility syndrome/EDS hypermobility type? I've been in so much pain for 8 days, but all tests have thankfully come bk ok (chest X-ray, ECG, bloods), so feel like I'm going mad and/or being a baby about the pain....

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  • Hypermobility and shoulder subluxions

    Hi, I was just wondering, has anybody subluxed their shoulder blade? If so, what did it feel like? I've got joint hypermobility syndrome and chronic fatigue syndrome, and since Wednesday I've had a sharp, very uncomfortable pain in my left shoulder blade, much worse than the typical knots I constantly...

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  • 5 year old with low muscle tone and weakness

    My 5 year old has a vague diagnosis of generalized weakness and low muscle tone.  He does appear to have hypermobile joints also, just based on what I see in his movememnts.  We have to travel to specilsts, and so far the pediatric neurologist has not given us any guidenece or additional testing...

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  • Sports/Exercise with Hypermobility

    I consider myself to be a fit and healthy 34 year old despite dealing with having to manage pain in my knee joints for the past 12 years, being told by my doctor that I had to give up a lot of the high impact sports I enjoyed so much took a hit all those years ago, but I have managed with lower impact...

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  • Does hypermobility spectrum disorder run in families

    Hi, I've recently been experiencing problems with my joints, and have just been told that my sister who I don't have contact with has this disorder, along with severe osteoarthritis. Does anyone know if this could be relevant, and whether this condition runs in family?

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  • Re-occurring transient synovitis/ rheumatoid??

    Hi again, Iv already posted once about sons hypermobility , but now he's having re-occurring transient synvonitis of the hip which consultant has said is quite unusual , he feels it maybe more likely to be rheumatoid but my question is does anyone's children have r/a without stiffness, his only...

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  • Recently diagnosed - what can I do?

    Hi all, I'm 22 and just been diagnosed with hypermobility syndrome by a rheumatologist. I've been struggling with achey joints for around 3-4 years and recently been starting to have back and abdominal pain. After years of visiting the GP for this and them being absolutely useless, I found a...

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  • help me please.!!

    a year and half my daughter (5yearsold)was diagnosted with hypermobility syndrome (doble joined) she started feeling pain in one rib and then in the other one i took her to her doctor and they said it was "growing pains" but it was getting worse she started with pain in the other side , neck,...

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  • Hypermobility Problems with Period.

    I have recently been diagnosed with Hypermobility, only after going to the doctors with pain several times with no explanation until my knee dislocated while I was walking to school. The doctor was useless and knew no answers to my questions, and hasn't bothered to do research and my physiotherapist...

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  • HMS, pain in chest and possible misdiagnosis of asthma

    My 19 year old daughter has hyper mobility. She has had a lot of the 'normal' complications - dislocating shoulder, back problems, had keyhole surgery on her wrist etc. She, like many others, is an ex gymnast and still likes to keep fit but quite often experiences severe chest pains in her breastbone...

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  • JHS Getting worse and Nobody Understands

    Hi I was diagnosed with Chronic Joint Hypermobility Syndrome as a child and in recent years it has been getting progressively harder to cope with.  I struggled with my education to the extent that I had to drop out of college and have attempted to work many times but have always found that my joints...

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  • confused and desperate hms and fibro

    Hi, Im 34 have hms, fibro and a list of other illness. My Dr is unsupportive and just getting a referral to the rhumatologist is a story in itself. Turns out it wasn't all in my head...Anyways after diagnosis she told me to exercise, like Pilates to ease my pain. But even after minimal exercise I'm...

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  • Hypermobility and osteoarthritis,how does one affect the other.....

    Hello everyone. I have been diagnosed with hypermobility and also have osteoarthritis in all the same joints. Was suggested by the rheumatologist that my doctor sort out some physio for me but to be quite honest i am in enough pain just moving about day to day and forever cracking from one joint or another...

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  • Slight Swelling and Doctor Problems

    Hello all, I was diagnosed with HMS a year ago after a shoulder injury. Now I do physical therapy and whatever I can to prevent myself from getting injured (now that I know what the problem is... up until last year it just seemed like I general joint pain especially in my shoulders and hips). Anyway...

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