Daughters hypermobility

Hi, my daughter who is 11 almost 12 was diagnosed with hypermobility last year. She has had it all her life but it's become a lot worse the past few years. She gets a lot of pain this time of year when its cold and she has to click her neck and fingers a lot. She is now complaining about her wrists and knees hurting. Can anyone tell me if doctors should be doing something for her? They are aware of her condition as it was diagnosed by a paediatrician . They just don't seem to be doing anything at all. The doctors around here are beyond rubbish! She is also complaining of pain after she does PE in school and I am concerned about her pulling one of her joints out of place.

[Tash1971]

Hi Katie Katie

Sounds like u need a second opinion if ur own gp won't refer her back to paediatrics ..I am aware lots of kids cracking knuckels & necks my son does it he says it relieves the pressure ,but I've mentioned this to a good friend who is a Dr & he said it's habit & harmless it's the build up of pressure in the joints &the cracking is the dispersing of it..my son use to have leg pain,when he was growing, u think about it their bones stretch muscles ,move very painful growing up.

Wait till a locum is at ur surgery!

[Hidden in reply to Tash1971]

Thanks she does have another paediactric appointment soon so will speak with them about it. Thing is it's the community/school paediactric department not sure if they have the ability to refer to the hospital.

[Hidden]

My daughter is now 12 , and she has had pain for a year now, starting feet, but now back/hips/ and general illness issues too . Doctors don't like to refer needlessly, but we pushed as you know as a mum if somethings not right . She is now seeing a Rheumotologist , and they have picked up mild hyper mobility among other things, so find a doctor who will help . I have been to my daughters school , due to absences and I have got them to sign her off PE , so she can be in the warm and catch up on other work . Sometimes it can just be growing pains, but if you don't think it's just that , then push for her to be helped. My daughter can click every part of herself include head and back , it's not nice to hear ! But it obvious,t something she needs to do ! Keep going and get help . We don't yet have a diagnosis but she has orthotics , and she paces herself with what she can and can't do .good luck.

[Hidden in reply to Hidden]

Hi thanks for reply. No it isn't just growing pains she has had problems with her joints since a baby it's just become worse over the past four years or so and intensified last 2 towards pubety. She has a diagnosis of hypermobility. My daughter clicks everything also, she also twists her leg all the way around, it's weird! I obviously worry as heard it can lead to arthritis in later life and that runs in my family. She is also expressing being in pain with it. The school are aware and she loves PE it's just she complains after of her joints hurting. I will see if she can get in to see a rheumatologist thank you x

[Hidden]

Sounds like my daughter, she turns her arms inside out and pulls her thumb down in line with her arm. So horrible but facinating at the same time!

She's 22, never had any treatment for it. I so hate the cracking, but she still does it.

She's affected by the cold, she gets stiff if she's sitting too long. She gets back ache too. joints ache,muscles ache.

She loves it when she gets a pain or an ache in an unusual place as if focuses the brain and it "forgets" about the usual aches and pains for a while.

She uses heat pads and paracetamol occasionally.

It's never stopped her doing anything, cycling, hill walking, swimming. She does tire easily, and is sore the next day, but it's bearable, good excuse to lounge about and take it easy.

As for the drs, if they can't do anything they can't do anything. We do seem as a society to have great expectations for our drs being able to help, unfortunately there are some things they can't help with. But rather than being a shut door in your face, it's liberating. You can go and find things that help yourself, there are so many alternative therapies out there, who pick up where the NHS cannot do any more. (Great oversight of the NHS not to include these as treatment). Try one for a few weeks, see if it helps. Ask questions, get solutions. Move onto the next, then the next. After a while, you'll have a whole list of things that work, that you can quite often do yourself, and the alternative therapies take are of your moods and feelings too. So even if they can't help physically, they can help relax your mind.

We didn't have any problems at school. But your school should be working with you to manage this. maybe worth talking to your guidance teacher about it, then with the guidance and pe teacher. It may be that your daughter could do yoga or pilates instead of the more active sports.

[Hidden in reply to Hidden]

Yes thank you. She also excessively sweats and has done since a baby. It's more when she is in bed at night. She had a thyroid function test recently as that is something that runs in my family down the female line(thyroid dysfunction ) Thing is they no longer test for t3 on the nhs and that would be relevant for her. Her t4 and tsh were normal. I am aware of alternative therapies and don't fully rely on the nhs. I got my own thyroid disorder diagnosed privately and now self medicate as the nhs refused to re test me. Also sorted all my vitamin levels out to optimum. My levels were almoat non exsistant thyroid wise and low b12. So I never put all my eggs into one basket and rely on them. I have a deep mistrust of them as my dad died due to GP regligence. Only go to them as a necessity. Thanks for your reply. I will look into different things.

[Hidden]

I don't know much about the thyroid, but it may all be connected. It does influence a lot of things in the body.

It may be that you have to go private with your daughter too, even if it's just to get the initial diagnosis.

[Elap0911]

Hi Katie ... check out this link regarding Ehlers-Danlos Type 3. Our daughter has had similar issues and continues to progress as she's gotten older (19 yo). If in fact she is diagnosed with this, make sure you seek out a PT that specializes or is well versed with this condition.

Hope this is useful.

ehlers-danlos.com/hypermobi...