Ever since Eloise has been vocal she has complained of night pains, particularly in her knees. For years this was passed off as growing pains. She would be screaming in pain, literally screaming, and I would have to rub her knees for hours at a time to get her to sleep.
The pain would always be worse if she had been particularly active that day, even just a PE lesson at school would cause her extreme pain and she asked to give up ballet, which she loved, because the pains she experienced afterwards was just too much for her to cope with. I spent hours and hours on Google trying to shed some light on what was wrong because at this point, I didn’t believe growing pains could be the cause of this much pain.
It was her Nanny who first noticed that, no, this wasn’t growing pains and she thought Eloise has something called Hypermobility Syndrome (now known as Hypermobility Spectrum Disorder). We took her to the doctors armed with this new knowledge and she was referred to a Physiotherapist where low and behold, she has hypermobile joints, femoral anti version and NOT growing pains. I was later diagnosed with Hypermobility Syndrome and everything began to make sense.
I thought I would share ways we have found to cope with these pains and chronic pain in general –
Eloise finds relief mostly from heat which is where Hugzzies come in handy! These are cute wheat bags that can be secured in place with a Velcro strap. We had tried regular wheat packs before which helped but they just would never stay where you wanted them to and became a bit counterproductive but these are fantastic! They come in various animal designs which makes having to use them so much nicer for children and the strap means you can secure them around limbs. Eloise absolutely loves hers and the lavender scent helps relax her too.
DEEP FREEZE GEL
The gel is suitable for children over 5yrs according to the leaflet inside. It’s basically a gel you put on the affected area and it will create a cooling sensation without the need for ice packs. It has a sort of minty/menthol scent and I use this as a last resort as sometimes, Eloise finds the cooling sensation too extreme. It does help after she gets used to it though.
The Tiger Balm White Ointment is suitable for over 2’s and it’s the same idea. This has a stronger smell though.
These are a staple in most chronic pain sufferers first aid kits. I pop a bandage on her knees overnight if she’s having pain. The compression helps somewhat although normally she will need heat too.
We try not to resort to using Calpol because we were told by the physiotherapist that the more medication you use the less effect it will have so we keep medication for the time when she REALLY needs it and nothing else helps enough for her to fall asleep. Eloise is terrible with taking medication and it used to be a struggle to get anything in her but recently came across these Calpol Fastmelts which are suitable for children aged 6+ so I’m hoping these will be easier for her.
Pillows, cushions and more pillows and cushions. When I get limb pain, particularly in my knees, propping the affected knee on a pillow (or both, although I hate sleeping on my back so I alternate) or even in between your legs can help relieve some of the pain. Eloise gets annoyed by extra pillows quite quickly but it does help her too.
PENCIL GRIPS, WRITING SLOPES AND ERGONOMIC PENS/PENCILS
When Eloise started school she really struggled with her handwriting; she knew the letters and how to spell the words but she couldn’t make her writing neat. The introduction of pencil grips, special pens and slopes made it a lot easier for her and her handwriting has improved leaps and bounds over the past few years. Her hands and fingers still get very tired very quickly but she’s getting there!
Baths are sometimes the only thing that will give Eloise some relief, I have been pretty vigilant in making sure she sits in a warm bath after any high impact sports or days where she has been more active than others. The faster I get her in the bath afterwards the more chance she is of having reduced pain that won’t affect her sleep. She went rock climbing for an hour the other week and her legs were burning she told me afterwards but we had a short walk after and then straight into a hot bath. She fell asleep and wasn’t woken by pains which surprised me a lot considering she was hyper extending quite a lot climbing the walls so baths definitely help. Bath bombs from Lush are a good shout, they make sitting in a bath much more fun!
Choosing low impact sports like swimming to build muscle tone can really help, Eloise has never experienced after pains from swimming and we found it really helpful to keep her active when she is going through a tough time with her legs.
Stretching before exercising can help but when you have hypermobility, you have to be extremely careful not to hyper extend. We also stretch before bed, particularly her calves as these are very tight in relation to her other joints and muscles.
Now this is something children especially difficult because they want to do EVERYTHING. Eloise is a very sporty child who enjoys being active but she suffers for it later. Encouraging breaks at various intervals during activities can be extremely beneficial.
Resting is particularly important for those with chronic pain conditions and hypermobility. Joints that are hypermobile are working a lot harder than normal joints just to do simple things such as standing, walking and writing and pushing your body beyond it’s limits is far more damaging and can cause injury far easier than joints with a normal range of movement. Getting that activity to rest ratio right can be pretty hard for a child so assigning time to rest is just as important as keeping active.
This is one of the first things we tried to help with Eloise’s night pains. Putting weight or pressure onto the joint that is causing the pain helps her a lot and I found myself rubbing and squeezing her knees sometimes all night long to decrease the pain.
These are by far the best trainers I have come across, they are the lightest I’ve found and generally have memory foam insoles. Eloise has orthotic insoles which also fit fine inside them (without the memory foam) but she went climbing with them and only experienced muscle pain after as opposed to joint pain. Since switching to these trainers from Clarks ones I have noticed a big improvement in terms of her pain levels after physical exercise.
Dr Martens, Timberland, Kickers; all these were recommended by the Physiotherapist for children with Hypermobility. Anything with a bit of height to it to support wobbly ankles. Both Lily and Eloise have very bendy ankles which cause their feet to fall inwards. The high backs of this style of shoe help support the ankle and prevent sprains etc.
I bought this little pot of Cotswold Lavender Slumber Gel from a beautiful National Trust shop and Eloise loves to use it, I find on the nights she is struggling with pain levels it helps relax her enough to drop off to sleep. The Huggzie doubles up the lavender for extra relaxation!