Joint hypermobility syndrome

[chloester]

i suffer from joint hypermobility syndrome
i have had it from a very young age and it is extremely painfull in my wrists and knees. Drs took years to finally diagnose me i was told i had arthritis, ganglion etc. now im told there is nothing they can do to help me
i have heard yoga helps but i cant put weight on my wrists when they are bad, some times i dont get paint others i cant move my wrist without being in pain plus it seems to cut circulation a little as my hand gets really cold when its sore

does anyone else suffer from JHS that can offer some advice

im only young but sound and look like and old woman trying to sit down or stand up from my knees (which can click on que now lol)

thanks!

 

[blossom]

My daughter is 16 and had this diagnosed a couple of years ago. She is very very "clicky" as well and sometimes makes what looks like slightly odd movements because she "needs" to "so it feels right" - maybe you can relate to this?

She does worry me, like you she has weak ankles and wrists but does a 3 hr gymnastic class every weekend although she has so many supports on you wouldn't believe it, but they do help. and the doctor said if she felt she could manage, it wasn't harmful. I'm not so sure.

How old were you when it was diagnosed?

 

[BeccyMoomin]

While I do not suffer personally my dad however does very badly. He is in the highest scale(which he probably tells me because he is a whingy man for more sympathy)

He, like you took ages to diagnose and danage was proabaly already done

Have you tried swimming? He did this and said some improvement because there is not as much stress on the joints. Yet there is bouyance and resistence of the water.

I know he also has acupuncture which he says helps.

I hope it eases soon

 

[chloester]

i have had it from a very young age, people laughing at me in primary because my knees clicked when i sat down. sometimes if i dont sit right my hip pops out of place lol nothing a little moving around cant fix

i was the same, i have so many wrist guards but they dont help me at all only thing that helps is constant pressure but i cant sit and hold my wrist all day

i dont swim due to lack of body confidence but acupuncture is something i have never considered? i have it all over but my wrists are the worst! i would actually get surgery if it would sooth the pain as no pain relief seems to touch it xxx

 

[chloester]

oh yea and i only got diagnosed last year, had it before i was 7 and im now turning 20 this year and thats me only really just found out for sure thats what is wrong with me

now im battling to find out if i have endometriosis, have had the symptom since i was 13 but have been trying to get a diagnosis for the last year now

drs hate me i think haha

 

[jadebeatty92]

Hi I have this I was diagnosed when I was about 8 I think, I find swimming helps and in the colder months it gets worse so I'm abit naughty and have the odd sunbed to warm the joints, I've been told to avoid heavy activities such as running, my doctor also always gives me coco dermal but I don't like taking pills on a regular so only have them when I'm in a lot of pain, hope you feel better soon xx

 

[jadebeatty92]

I have the hip just randomly popping out as well I think that hurts most for me feels like your bone is snapping, and it always happens when I'm out shopping so I have to stand in a awkward pose for 10 minuets till I feel I can handle to walk, my hip got worse when I fell pregnant all the extra weight did not help and it's been bad since (even though I have lost the weight) my mum really pushed for an early diagnosis when u was young which I was lucky that they listened to her, it must have been horrible suffering for all those years not knowing what is wrong, have they offered you physchio? I had a long course but found it didn't really help xx

 

[blossom]

I really feel for you. Maybe dr's are becoming more aware? let's hope so. 13 years undiagnosed is such a long time.

Just to add, my daughters shoulder pops in and out and she has broken her ankle once and ripped ligaments in it twice as well bad enough to need crutches for 3 weeks. Don't know if there's a link. Probably.

Gonna mention that swimming helps, thanks, also the acupuncturex

 

[chloester]

my toes pop out also lol, at dancing me would sit for ages pointing our toes and holding it for 30secs anytime someone stopped we were made start again sadly my toes popped out every time and i had to bend them back into position so the class didnt particularly like me when it came to that haha

never been offered anything, i was told to take paracetamol, the drs are clueless to this condition where im from i think

i have heard yogo helps so im going to a mixed body balance class to see if that helps at all, the one bit of information my drs did offer me was that due to lack of ligament holding joints together i need muscle to hold it otherwise i will be in alot of pain, which i am haha
so heres hoping if i build muscle it will ease a little

thing is i cant put weight on my wrist right now so as for this class lets hope im not on my wrist too much or it may be a trip to the hospital

i remember once i tried to play leap frog with a concrete pole and had to sit with frozen peas on my wrist for half the night, so weight on my wrists when they are going through a sore phase is not always a good idea

thank you all for your support and advice xxx

 

[Nearlyme]

I have it in my hands! Never bothered me and was only diagnosed when I showed a dr client my party trick with my fingers.
Feel for people who are badly affected. My mates son has in in his knees and struggles to walk long distances.

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[Nikki May]

I was told yoga is very bad for hypermobility ad you can over stretch and pinpoints out of place. I go to an aqua therapy class and there are lots of hypermobile girls there.

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[Laurasnowwhite]

I and my 3 sisters all have this to varying degrees.

I was the last to be diagnosed (only 6 months ago) as I am on the larger end of the scale (!) so Drs were surprised to see how flexible I am!!

My feet & ankle bones crunch, both my arches have collapsed, my shoulder is damaged and I can't massage anymore.

I broke my wrist twice, once opening a bottle of sunscreen and the second time catchin a foam softball! All is connected and ligaments aren't as strong.

Regular physio is meant to help, as it focuses on the tendons around the affected joints.

 

[chloester]

I and my 3 sisters all have this to varying degrees.

I was the last to be diagnosed (only 6 months ago) as I am on the larger end of the scale (!) so Drs were surprised to see how flexible I am!!

My feet & ankle bones crunch, both my arches have collapsed, my shoulder is damaged and I can't massage anymore.

I broke my wrist twice, once opening a bottle of sunscreen and the second time catchin a foam softball! All is connected and ligaments aren't as strong.

Regular physio is meant to help, as it focuses on the tendons around the affected joints.

aww thats so sad! im terrified of my arches collapsing, my feet are sometimes sore when i walk too much feel like i have been wearing heels all day
cant say i have ever broke a bone though i did sprain my ankle 5 years ago walking down stairs had to get carried to a nurse in my school

i never realized how much of a problem the condition is, i feel people look at me and think your double jointed get over it if only they understood the pain it causes people
i tried pole dancing it was fantastic but its all using your hands to start with and well lets face it if i cant lean on my wrists i cant lift my full body weight with them haha

the most frustrating thing is how sometimes i have no pain what so ever just bendy limbs and clicky joints, i used to always be in pain now its like every couple of months
but when the pain does come, i could swear i have broken bones its so painful and nothing helps, though heat helps for a split second i have found
i find myself standing over radiators holding my arm out for the slight release of pain it gives

also today i found out there is a whole charity for JHMS who would have known! i would love to help raise money for them for awareness and to help raise funds for treatment as there is nothing!

 

[Jodieeeanne]

I'm also hypermobile and am 22.

My knees crunch terribly and I too have awful moments when joints get stuck or pop out of place.

I had regular physio including using resistance bands to increase the strength of my muscles around the ligaments to try and support the joints.

Also have orthotics in my shoes as I'm about as flat footed as I can get and it made my knees worse by putting more pressure on them.

My wrists and fingers ache from my office job and they get worse in the cold so I try to stay warm !

Xx

 

[LMA]

I have it in my hands! Never bothered me and was only diagnosed when I showed a dr client my party trick with my fingers.
Feel for people who are badly affected. My mates son has in in his knees and struggles to walk long distances.

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Having hypermobile wrists isn't the same as having Hypermobility Syndrome.
Hypermobile = flexible beyond the norm
Syndrome = having associated problems

 

[LMA]

Hypermobility syndrome is often a genetic thing.
It's usually to do with a defect in the production of connective tissue. This makes ligaments lax (allowing us to be flexible), it can lead to us being weak, having digestive problems (IBS is common amongst bendies!) and even circulation problems (there's something called POTS a lot suffer with).

There's a charity called HMSA (Hypermobility Syndrome Association) who have an online forum if you're looking for support. The also have local groups you can join to meet other bendies in person once a month. X

 

[Nikki May]

Hypermobility syndrome is often a genetic thing.
It's usually to do with a defect in the production of connective tissue. This makes ligaments lax (allowing us to be flexible), it can lead to us being weak, having digestive problems (IBS is common amongst bendies!) and even circulation problems (there's something called POTS a lot suffer with).

There's a charity called HMSA (Hypermobility Syndrome Association) who have an online forum if you're looking for support. The also have local groups you can join to meet other bendies in person once a month. X

My friend has POTS and EDS, it's so horrible people don't realise how awful it can get. Defo recommended looking for a heated therapy pool. X

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[LMA]

Nearly forgot to say physiotherapy helped me. But if you get referred for physio make sure they KNOW about HMS. When I was first referred I had to wait ages just for a telephone consultation and for them to post me some exercise instructions, but I didn't benefit until they saw me in person and could properly assess me (turns out the exercise they sent first were too difficult for me!) x

 

[Kat91]

I was recently diagnosed with hms. I get bad pains in my spine, right wrist when I massage and am clicky everywhere. I've always been quite bendy and my hip occasionally pops out which is really painful. Doc said it's not too harmful I'm just more prone to achy joints, he said to try pilates? Anyone tried that?

This was really bad news to me as I'm only 22 and am doing a massage course atm so I haven't even started massaging properly and I'm already in a lot of pain

 

[Nikki May]

I was recently diagnosed with hms. I get bad pains in my spine, right wrist when I massage and am clicky everywhere. I've always been quite bendy and my hip occasionally pops out which is really painful. Doc said it's not too harmful I'm just more prone to achy joints, he said to try pilates? Anyone tried that?

This was really bad news to me as I'm only 22 and am doing a massage course atm so I haven't even started massaging properly and I'm already in a lot of pain

I love Pilates, it's more about core and muscle strength wwith small movements here yoga is more stretching and relaxing and bigger movements

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