Joint Hyper Mobility Syndrome FAQ

Joint Hyper Mobility Syndrome (JHMS) - FAQ

I decided to make this page as I am a sufferer of JHMS and there isn’t a lot of awareness of this condition out there.  Some suffers of HMS even joke around about it, I guess being super bendy can be quite an advantage in some cases, however I want to raise awareness of the not so great side of  this condition, also just wanted to make a FAQ page because I am totally fed up of people asking me why? What? How? And EH, you WHAT? – It is a very lonely condition if the people around you don’t understand.  So yes, this is for everyone who has ever been ignorant towards me, whether they meant it or are just a bit dippy! – I have tried to answer the questions to the best of my knowledge as a sufferer, if you think you have it or want professional information on it, please, please, please go to your GP or Google it on the NHS websites, although the information is vague it’s by the actual NHS not just a whiney sufferer ;)

WHAT IS JOINT HYPER MOBILITY SYNDROME?

If you are diagnosed with ‘Hyper mobility’ it means that you can move some or all of your joints more than most people can.  A lot of people with hyper mobility are double-jointed.

Hyper mobile joints are very common, lots of people have them, and most people can live a long and happy life without even knowing or having any problems with hyper mobility.

A minority of people with hyper mobile joints experience pain or other symptoms, and this is when it is called joint hyper mobility syndrome.

Despite the obvious joint problems and pains, which are:

·         Muscle strain/pain

·         Joint stiffness

·         Backache

·         Easy dislocation of joints

·         Weak collagen

It can also cause problems in regards to your internal organs, giving you health problems such as:

·         Asthma

·         Irritable bowel syndrome (IBS)

·         Weak bladder

WHO GETS JOINT HYPER MOBILITY SYNDROME?

Anyone who has hyper mobile joints can get JHMS.  Women are however more likely to be diagnosed with it.

WHAT CAUSES JOINT HYPER MOBILITY SYNDROME?

There are many reasons behind why somebody could get JHMS, it could be because of the shape of the bones, for example if you have shallow hip or shoulder sockets, weak or overly stretched ligaments, the stiffness of your muscles could also affect it and some people even inherit the condition from their parents.

IS IT A SERIOUS ILLNESS/CONDITION?

As mentioned in the definition of JHMS it depends on the person.  Some people can go about a normal daily life with no pain at all.  Some suffers even use HMS as an advantage such as, Gymnasts.  There is however some people that are unfortunate enough to experience some or all of the symptoms mentioned in the above definition.

CAN YOU END UP IN A WHEEL CHAIR?

Yes you can.  A lot of the cases I have heard of have been after child birth, falling one too many times, dislocations, arthritis.  However I am not the best person to ask this question! – I haven’t had the pleasure of child birth yet, I have been lucky at all the times my hip has given away on me leaving me flat on the floor and my shoulder and elbows are the only things that have dislocated or moved out of a normal/comfortable place so far.

HOW DOES JOINT HYPER MOBILITY SYNDROME AFFECT ME?

To begin to answer this question about my personal experiences as a JHMS sufferer I will take you through my history.  From birth my hip has always been an issue.  When my mum would change my nappy and I would wave my legs around (great picture I am sure you have now) my hip would click.  My Mum describes it as a ‘bang!’ maybe a bit dramatic, more like a clicky clap, it is loud though.  People to this day look at me and say ‘what was that?!’ (Ironic, I just moved in this seat and it did it, CLAP!)

As I grew up I was always really conscious of my hip, all I can describe it as is a dull ache and the feeling that it may pop out at any moment, only way I can try to create a picture of this is a Barbie doll, everyone’s had a little brother or someone pull of their Barbie’s arms and legs… That’s how fragile it feels!  I remember at school in a P.E lesson when we were doing hurdles, I always went and hid or asked to sit out with a Migraine if my secret hiding place wasn’t accessible.

Anyway, time moved on and I just lived with the pain but I got to 21 and couldn’t cope with the pain any more.  I was also experiencing pain in other joints and they were unexplainable.  I wasn’t a secret cage fighter, why all these pains?

So just after my 21st birthday (2011) I went to the doctors.  After months and months of going back and forth to them I was finally referred to the Rheumatology department at hospital where I was diagnosed.

HALLELUJAH!

Zoom forward to October 2012 and regardless of the diagnosis I am still no better, the pain is the worst it has ever been, so much so I had to leave work.  I cannot commute, imagine standing on a packed tube with people knocking and pushing you in all your hurting bits, imagine feeling like your joints are on fire, this is what I get, and this is how I feel! The other commuters don’t know this though; I haven’t got a flashing sign above my head.  Even car journeys are a pain, (no pun intended) I cannot sit still for very long.  Walking is something of a mission too.  My hip regularly gives way; I love randomly laying on the pavement in all kinds of weather and pretending to passers by that I just fancied a nap… I am petrified of going out on my own.  What if next time I fall it isn't so near home? I can walk for about 5 minutes before I need support or just a seat.  It’s a horrible circle of pain and sleepless nights!

I have not been able to work since January this year and am not entitled to anything.  It does make me mad as before the pain got too much I did full time work since I left VI form so it is not as if I haven’t contributed to society ever... As have all of my family!

I need to visit a disability employment adviser for my next step, I just hope they understand and don’t fob me off like the doctors first did.  It took over a year for diagnoses that the doctor diagnosed in all of 10 minutes!

I do keep a diary of my pain and day to day doings, I may upload it on here, may not. 

WHY ARE YOU ALWAYS IN PAIN/ YOU’RE IN PAIN STILL, ARE YOU LYING?

Yes, I am always in pain but some days it is worse than previous day’s visa versa.

No I am not a liar.  This is a reoccurring problem for sufferers because the pain and symptoms can differentiate between days a lot of people, friends, family and colleagues only see you on good days and rather wrongly just assume you're a drama queen. 

Yes I am still in pain since the last time you bothered to ask/care/be nosey unfortunately there is no cure of JHMS and pain relief hardly works.  Most sufferers only ever get pain ‘relief’ that is more manageable rather than gone completely.  Trust me I have tried a combination of everything it’s always there throbbing away!

If you have any more questions just ask, I’ll reply asap!

L.Ux