Joint Hypermobility Syndrome

Seeing as it is something I talk about alot due to madam and her diagnosis last year I thought it would be good to do a proper post on the subject and what JHMS is, what it means, how it differs person to person and how it affects us. Now I know alot of people in my life are more then likely fed up of talking about JHMS but if the information is out there perhaps it could help someone else? the back up with information the could take to the gp and suggest it is looked at. For us we had to struggle for 4 years for someone to properly look at madam and not just dismiss us saying it was growing pains. ( That is such a bug bear even now)

Okay so first things first, what is Joint hypermobility syndrome,  some people may have heard of hypermobility, it used to be the coined phrase of "double jointed" it is generally those who have a wider range of movement in their joints. This can be a great advantage to dancers, footballers etc as they are able to move in a better way, more fluid, but they have control as well, some dancers even condition themselves with time and training to be as flexible so that they are more subtle with their dancing, fluid and well graceful. If anyone saw my daughter she is anything but graceful when walking!
This link takes you to the NHS description for JHMS
NHS Joint hypermobility

As it says on the NHS page, Joint hypermobility Syndrome, differs from just hypermobility, it can range quite alot from those who really suffer day to day to those who might just have a bad day now and then. It involves pain that can be chronic, fatigue, issues with bladder, bowels, issues with the skin being very soft, dislocations and much more. Though the more symptoms you find the more you start to cross over int Ehlers Danlos type 3 which is a whole new ball game. ( And is also said that those that do have JHMS have EDS type 3 because they are basically the same condition but not going there just now)

http://hypermobility.org/ Link to a Hypermobility page that is a foundation set up to help inform/ education and support people with the conditon.




Now with madam where do we start?  didn't really notice anything when she was little after all we had her eczema etc  to worry about she was a premie baby though not by alot but she was small when she was born. ( 4lb 14oz at 36 weeks) didn't figure anything was wrong, she was a little slow with walking but  no one ever flagged up that there were any issues! she was 18 months, not terribly slow, but not exactly fast either.  When she was 2/3 noticed that she use to fall over alot, basically over her own shadow, she would tire easily and she started to complain of pain in her legs. ( being quite verbal she was able to communicate very easily with us) I took her to the gp and told them. They said because the pain was in both legs then it was just growing pains and to come back when it was in one leg.... Ok so it continued, weeks, months, any amount of walking and she would be up crying in her bed needing her legs rubbing.

This went on for quite a while. There is only so much you want to go to the drs  for them to knock you back.  With all her allergy appointments etc with the pediatricans I brought it up with them, to have a dr at the hospital barely do anything with her to check and go its growing pains.  Head against a brick wall moment. To put this in perspective this had taken years to get to this point, she was 5 when we had this doctor saying its growing pains. So i requested a transfer to another hospital because I was sick of the pain she was getting which was getting worse and the fact she could do freaky things with her legs was coming to light. ( not often you catch your daughter with her toes on her nose.... going the wrong way to do it.) 

When we got our new referral which was last year everything changed. we were not in with the doctor 10 minutes when she said madam had jhms. All these years all the asking and the dr manages to tell us in such a short time. bam! She showed me why and looking at madams knee  she told me where the ligaments should be.. and where hers where. lets just say they are not in the right place! It felt so refreshing for someone to listen, Someone to take a proper look and not just dismiss us. How i didn't cry I don't know.

I wish I could say things have gotten better since that diagnosis but they haven't, madam has actually gotten alot worse, to the point sometimes she can't get out the door.  she locks her knees in place so  she can literally walk. Her ankles are very strange.  she bruises easily ( currently have a bruise that going on for two weeks not fading)  It is affecting us, going out shopping ,days out, school, us as a family. It is very draining. Unless she is doing her funky tricks no one can see what the condition is like.
(going to show a few pictures)

There is a start of a bruise along her wrist, possibly hard to see for those who don't know what they are looking for but there is a dark line that looks like a grubby mark on her wrist, also her thumb is rather swollen, this is from her first session of tennis at school... so nothing extensive for the 7 year olds and yet she came home like this! I wouldn't have said it was normal. 

This was taken a few weeks ago, she'd had a interesting day and bad mummy i thought she was trying to gain some extra time before bed when she was saying she was hurting( yes i ate my words after) the red patch on her knee suddenly came up when i was sat with her. her knee was swollen and the next day i took her to the rhumatologist on a emergency app who found that she had a low grade inflammation, the only cure? a steroid injection which she had two weeks later, Those two weeks were hell she could hardly walk!  the injection went well and so far she has been better, not great but better! 

 Please excuse the mucky shoes, but here are her school shoes, suppose to be the best out there for her ankles for support, ( she does have a insole for her shoes as well) this wear and tear has happened since September, they are both wearing down on the outside of the shoe! Not very good and show the insoles arn't doing alot of good atm.

And now the ankles in question, above is the left ankle the one below is the right, I was watching how she was walking in our hall way and you could see  the ankles sliding from one side to the other, creeeeeepy. now these are not as bad as some I have seen, but you can clearly see that her ankles are not what they are suppose to be and they are  forcing themselves out the other side. Is it any wonder why she suddenly goes over on her ankles they don't know which way they are going.


Now there are those at there who are worse then madam with the condition, and there are some who are better and don't have as much pain. As mentioned in other posts we are having issues with people down here believing what is going on with madam and that she is getting her own way. However it is not like the above things can be faked, you can't fake these ankles as much as you want to try, and no child ever would refuse to go into a toy shop, for a toy if they were putting it on.


Madams Symptoms:
Knees, ankles, hips flexible also slight elbows.
Pain in knees, ankles, legs, sometimes hips back and neck.
Frequent headaches
Fatigue
Bruises easily, slow healing.
Issues with bladder control ( more so suddenly not needing it to be extremely urgent need to go!)
Trouble getting to sleep ( not just her being a pain in the bum)
Ankles, knees giving way
Flat footed when weight bearing.
Soft skin
Over pronation evidence from shoes.
Poor Core muscles ( what helps you balance)
Also tight hamstrings, leg muscles a consequence of her other muscles compensating for her lax joints.


We are having physio again and I'm hoping they will listen and be supportive because we really could do with some supportive medical professionals at the moment. Instead of the negative.  I'm hoping to find more people near us that have the same issues and that we can go and talk, because its very hard to talk to people who just do no understand what we have to do or think that madam is putting it on.