my daughter has joint hypermobility can you help

Somethingn I find helpful is an electric blanket.  It's not a long term solution but while you're waiting to see a specialist it might be something worth considering. 

Hi 

I hope you have got your daughter's health problems sorted over the last few months. 

I don't know if my advice will be much use now, but I was diagnosed with JHS at a very young age and was having similar problems as your daughter at her age. 

What I would advise you to do is to see if you can get a refferal to a specialist. From personal experience you will find that it can be difficult finding a Doctor or consultant who understands Hypermobility Syndrome well enough to advise you, but once you have found a one or a specialist things will be much easier. 

But believe me when I say that with the right help and treatment it does get better! 

Hypermobility Syndrome is a cruel illness and it must be difficult for you watching your daughter in pain but one of the best things you can do is to be there for her...which I am sure you are. 

A few more quick tips...it may be worth asking at your daughters school about any special equipment she can get, even something as little as grips for stationary, or a slanted board to rest on could make the world of difference. 

Also heat usually helps the pain...so you are right in using a hot water bottle, or a warm bath could help. 

You could also use a pillow or two to place under the legs to keep them raised which often helps the pain. 

Hope your daughter feels better soon

I really feel for you. I have just found this group after we finally got a diagnosis last week from the hospital that our 10 year old daughter has hypermobility syndrome.  We have been wondering what it was for ages and been passed from pillar to post, had every blood test for autoimmune diseases and other deficiencies and she has even had an MRI to figure out why her pain is worsening.  We were seen by the Pain Management team of a doctor, nurse, occupational therapist and psychologist who were all absolutely lovely and I feel we are finally in the right place to start improving her health slowly.  

She has always hated walking long distance and high impact exercise.  Slowly though she has become like a little old lady at night and in the mornings going to bed and getting up take her ages - she is so tired and achy that she needs help getting dressed and doing her teeth some  nights.  She can be in so much pain and have a headache that she has trouble sleeping and can often wake up in the night.  We use hot packs and now an electric blanket to relax her.  We also do hot baths with Epsom Salts or back and leg massages.

Some days she is in too much pain to get to school or her swimming training.  We jjust let her rest, but found that the more she rests the worse she gets.  We found that using the Wii Fit or just a gentle form of moving is the best thing and plenty of distraction and changing her position means she doesn't focus on the pain.  

Lately, she was getting almost depressed as she was unable to cope with the frequency and worsening of the pain.  She was crying all the time and stopped wanting to see people and do the things she loved doing - she felt different from other children and was becoming very anxious before we had our appointment;  in the past weeks she has had to contend with panic attacks which we are getting support with at her school.

She feels so much more able to cope even a few days after her diagnosis just because she now knows its nothing life-threatening and they are going to help her recover.  We are now hopeful that her OT appointment next week will give us some more support and guidance to get her pain under control.  Hoping she won't have to go on Ametrypteline but they said that this can help reprogramme the brain/ nerves to deal with pain better??

We are very new to this but hopefully she will begin to get better.  I hope that anyone in a similar place to us gets the right help too.