Night pain and growing pains in children with joint hypermobility and low muscle tone

Why do children experience leg pain?

Children with Ehlers Danlos (hypermobility type) may partially dislocate the hip or knee joints. This damages the joint structures, with inflammation and swelling. Repeated episodes of subluxation lead to further damage and pain.  Children with Ehlers Danlos should be under the care of a physical therapist with special knowledge of joint hypermobility who will provide advice on how to deal with subluxations, protect the joints and how to use exercise to improve strength. 

Children presenting with generalized or benign joint hypermobility (GJH) may have varying degrees of hypermobility, often associated with tightness in some muscles and their associated fascial structures.  The tight muscles lead to abnormal stresses on joints that are already less stable than usual.  

In many activities good muscle action is also needed to protect joints. In GJH the muscles are often weak and do not adequately provide this extra protection. 

In addition a child with GJH may also be poorly coordinated with poor balance which leads to trips and falls, exposing the child's joint to further injury. 

So what you have in GJH is are joints that are less stable than usual, exposed to abnormal stresses due to muscle tightness and without adequate muscle strength to provide extra protection needed when walking, running and jumping.  This combination leads to pain after exercise or at night. 

More about the nature and cause of pain in EDS and JHS 

More about knee pain

Knee pain in children with GJH is may be  caused by one or more factors:

hypermobile standing with elbows.jpgLooseness of the knee ligaments:   which  allows the knee to bend backwards more than usual. The child stands with the knees in hyperextension which puts strain on the knee ligaments. 

Weakness of the leg muscles: the leg muscles work to protect the joints from the stresses that normally occur when going up and down stairs, walking, jumping and running.  Children with hypermobility often have weak muscles which do no provide the support needed by the joints.  This strength is particularly important when walking, running and jumping. 

Tightness in the muscles and associated fascial structures that cross from the lower back over the side of the hips and knees. This includes the hamstring muscles and the fascia lata (also called the ilio tibial band). 

Children with tightness in the hamstring muscles cannot touch their ankles when sitting with their knees straight.  Often the child cannot reach much further than the knees.

    longsitting reach_1.jpg      ben longsitting slumped.jpg

 standing legs apart.jpgChildren with tight iliotibial band often stand with their feet wide apart and turned out. Standing with the feet closer together is uncomfortable. 

The tightness in the iliotibial band tends to turn the foot out at the knee.  This twist at the knee puts a strain on the knee.  The child may walk or run with the knee turned slightly outwards. Usually the calf muscles are also weak. 

When the child stands with the knee caps  facing straight forwards the feet are turned out more than usual. 

Night pain during growth spurts

Night pain often occurs during periods of rapid growth.  Bone growth happens mainly at night and in spurts with increases of millimeters in a single night. As the bones grow the muscles, ligaments and tendons must  lengthen to adapt to the new bone length and this happens more slowly than the increase in the length of the bones and can lead to strain on the joints. 

What can be done for night pain?

1  Start a stretching and strengthening program  to deal with underlying tightness and weakness which will reduce joint strain from daily activities.
2  It is usually safe to give your child a a dose of paracetemol before going to sleep over a period of a few weeks during a growth spurt, but be sure to check this out with  your family physician..
3 Some children find some gentle stretching before bedtime is helpful. 

Gentle stretches before going to sleep

A one leg stretch

I find this stretch comfortable, even pleasant for the child. It should not cause any pain.

Let your child lie on a firm surface – the bed or on a mat on the floor.
With your child’s leg still flat on the surface hold one  foot with both hands – one hand under the heel and one over the bridge of the foot. 

  leg elongation grip 2_1.jpg      leg elongation grip.jpg

Now gently pull on the foot as if you are trying to lengthen the leg and hold this gentle tension for about 20s. The pull should be gentle and comfortable. You should feel a sense of the leg giving and easing. 

If the pull is too hard you will not get this sense of easing and lengthening. Always pull less rather than more. 

A two leg stretch 

leg elongation grip 3.jpgWith your child still lying flat on the bed, sit facing the feet and rest your forearms on the bed. Cup your palms around and grasp the back of your child's heels.  

Now gently pull on the heels as if you were trying to lengthen the leg. Imagine the legs are two elastic bands and you are trying to stretch the bands just a little. 

NB In this picture you see me holding only one leg. This is because my left arm was in a cast and I could not position it correctly. The right hand shows thr correct  grip.

SfA Strength Training for Painful Legs  

  • 5 graded exercises, 15 minutes a day for 4 weeks 
  • Start slowly, increase load systematically and be dedicated  Read more

Stand one foot on box_1_1.jpg​Research has shown that a program of exercises to strengthen the leg muscles along with careful stretching of tight muscles will reduce pain significantly.  Your best option is to consult a physical therapist who has a good knowledge of joint hypermobility and can do a full evaluation and provide a program of exercises for your child.  

But as this option is not always immediately available, there are things that you as a parent can do the help your child. Exercises needed to be selected carefully so as not to cause pain and progressed over time to increase strength and flexibility.

Benefits of a strength training program

  • step down bend knee_1.jpgMuscles that are stronger also tire less quickly, so that the child can tolerate more exercise before experiencing the discomfort that goes with having very tired muscle. 
  • A strength training program that uses movement patterns similar to those used in everyday activities such as walking, running, and stair climbing has the added benefit of training coordination and strengthening the ligaments and well improving proprioceptive feedback. 
  • Engaging in an exercise program that is challenging and requires effort increases the child's self confidence and willingness to keep going

Importance of training children to tolerate effort 

Children with joint hypermobility and a cautious nature will often not like the sensations that arise from effortful physical activity: the discomfort in the muscles, the fast beating heart and rapid breathing. 

Cautious children need to learn to distinguish between sensations of effort ie discomfort in muscles and the pain that arises from injury. Discomfort from strenuous exercise is GOOD. It means that the muscles are working hard and getting stronger. It is not a sign of injury. If a child is weak and unfit, even mildly strenuous activity will lead to a measure of discomfort and avoidance, promoting a vicious downwards spiral. 

bend-knees.jpgAn exercise program that starts slowly and progressive increase the load will increase strength and coordination without provoking too much muscle discomfort. Slowly but surely the child will get used to the sensations of effort and start to welcome them as a sign of hard work leading the better strength and function. 

Very important note: please consult your child's doctor or physical therapist before embarking on an exercise program. This is particularly important if your child has very bad and regular night pain, acute and persistent muscle pain or joint swelling and inflammation. 

More about the nature, cause and prevention of chronic pain in EDS and JHS 

Children with EDS and JHs are more likely than other children to develop chronic pain.  Repeated injury sensitizes the injured tissue (muscles and joints). If  full range of movement  and good muscle strength, coordination and balance are not restored after an injury the joint capsule, ligaments and muscles may continue to be a source of pain, with fear of movement and pain leading to reduced activity levels which in turn leads to sensitisation in the pain pathways.  What seems to happen is that the pain receptors in the joint  become oversensitive and start to respond in an abnormal fashion and this in turn leads to over activity in the sensory areas of the brain so that the link between injury and pain breaks down.  Read more 

20 Comments

Autism and knee painpam

Comment: 

Hi Lori 

Thank you for your  comments and creating a link to this page on your Facebook page. 

I would just like to pick up on a couple of points regarding the movement difficulties experienced by children with autism. Children with autism are hypersensitive to certain types of sensory inputs - however I would argue that this is not the main reason for them experiencing joint and muscle pain.  One of the underlying factors is the presence of joint hypermobility which often goes with some tight muscles in the lower back, hips and legs. It is this tightness that causes abnormal stresses in the knee joint and  often leads to the toe walking. W-sitting also leads to stresses on the knees.

The other factor is anxiety which tends to increase the focus on sensations that are experienced as unpleasant. This includes the sensations of effort that are go with strong muscle contractions and a racing heart. As a result children may have very poor fitness levels. 

You will find more info on the link between anxiety and pain here: 

There is also a post relating to movement difficulties experienced by children with autism. 

 

Facebook referralsLori Pollard (not verified)

Comment: 

I posted this article to my autism blogs Facebook page as well, facebook.com/daysofwhineandrose, as autism households can have CP, with the accompanying muscle tightness, as well as a high prevalence ( considered universal in asd)of sensory processing disorder, and depending on a person's sensory sensitivities, joint and muscle pain can be a real issue, so your post will be very helpful in our community as well!

Thank you for your responsespam

Comment: 

 

Thank you to everyone who response to my request for information about the source of the Facebook referrals.

I have also added a link to another article on the Skill for Action website  that you might find useful: Understanding pain in Ehlers Danlos and JHS. 

This was posted in the FBErin (not verified)

Comment: 

This was posted in the FB group "People with Dysautonomia and Ehlers Danlos."

Wonderful information - thank you!Patti (not verified)

Comment: 

Hi,
I am Patti DeMuri, the founder of Healing Hugs Haven, an online support community for families facing chronic illness.  Many in our community have joint hypermobility, EDS or EoE (eosinophilic esophagitis) with unexplained leg pain.  It is such a blessing to have information and insight into the possible causes and ideas on how to help alleviate the pain.
Thank you again,  Patti

 

Hypermobility PostAndrea (not verified)

Comment: 

I got this post through an EDS advocacy group on Facebook. I run an EDS support group

Good informationElizabeth (not verified)

Comment: 

EDS Today - Ehlers-Danlos Syndrome (EDS) ADVOCATES facebook page

Thanks pam

Comment: 

Thanks Cheryl for the information. 

Joint Hypermobility PostCheryl Gates (not verified)

Comment: 

Hi Pam,

The link to this page was posted in a facebook group called Ehlers-Danlos Support Group.

An influx of Facebook visitorspam

Comment: 

 

Hello and welcome to all  Facebook visitors 

Today  there has been a huge surge in the number of visitors referred from Facebook to this page.

I am always very interested and curious to know the source of the referral -so would be really grateful if someone could let me know which Facebook page posted the link. 

Please also post any comments, suggestions or questions you have about the information on this page in the comment box below. 

With best wishes

Pam  

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