Hypermobility is more than just being a bit bendy. It is often misunderstood by family, friends and even the medical profession. My girls have hypermobility and Erin is diagnosed with hypermobility syndrome. I have written before, explaining the invisible syndrome and how it affects my children. HMS is a sliding scale leaving some individuals affected every single day so today I’m sharing with you 8 things you probably don’t know about hypermobility syndrome.
Hypermobility in Children
They have flare up’s and symptoms affect them differently and at different times. Hypermobility Syndrome has recently been reclassified which should make it easier for medical professionals and patients. You can see the diagnostic criteria here and show your medical teams if you are concerned.
Nosebleeds are a symptom of hypermobility syndrome
Yesterday I had a call from school that Erin was having a nosebleed probably brought on by the weather. The school rang to warn me because she had blood on her dress and they didn’t want me to have a shock at pick up. The nosebleeds are caused because her blood vessels are so fragile. All three of mine have had bad nosebleeds in the night, I remember Lee having to deal with one particularly bad one when one of the children were young and in a cot. He described it as a horror film as blood was smeared all over the child and the wall! As a teen I went through months of really severe nosebleeds until my nose was cauterized.
Sleep being hypermobile is really tiring.
Like really tiring and your body has to work really hard to hold itself together. This means many sleep a lot. My children all need lots of sleep and it is a joke with the teenager’s friends about how early they go to bed.
Bleeding gums and weak teeth come with hypermobility syndrome.
This is one of the parts of the condition I am most embarrassed about. My teeth crumble and my gums recede. I am really self-conscious about my teeth. Many with hypermobility syndrome have dental overcrowding and a narrow high palate. I have this and over the years have had teeth removed for this reason. This makes it imperative to maintain good oral health, and fix painful oral issues with dentist tallahassee immediately.
Different joints will be affected to a greater or lesser degree.
Chloe is really strong, known for her sporting achievements. Yet her wrists are incredibly weak and very painful with hypermobility. She regularly wears splints to take the pain away. Erin also recently had a sickness bug, the force of vomiting burst the blood vessals in her face. Because the rash would not blanche under a glass we were forced to be in the hospital for the day to be monitored.
Flat feet and aching is common as a hypermobility symptom
Two of my three wear orthotics because their feet ache without them. They cannot wear flip-flops as their feet fall out of them.
Growing pains!
These are a real thing. Many didn’t believe in growing pains but all of my children have suffered painful legs at night.
Clicking joints!
This one drives me crazy. My children are forever clicking their joints despite me telling them not to. I will sit on the sofa with them and hear them all cracking the joints.
Catching Erin standing in the craziest positions.
I will walk into a room and spot that Erin is standing on one leg and the other is propped up on the sofa behind her or bent into a weird position. She is often unaware of this and I have to correct her posture. They also struggle with some things that would be easier for others. Learning to ride a bike is problematic. My 13-year-old has given up and now won’t ever ride. I am hoping that Erin will learn in time but she doesn’t have the strength or coordination at the moment.
Do remember though it is not having one of these symptoms that makes for a diagnosis of hypermobility syndrome. It is the combined bigger picture. These are just 8 Things You Probably Didn’t Know About Hypermobility Syndrome.
What have I missed out that others maybe wouldn’t attribute to hypermobility syndrome?
8 Responses
I have this, the leg aches as a child were awful Infact I still get them now in my 30s. My fingers come out of joint without me noticing and it freaks people out a bit. X
My friends daughter has hypermobility and i genuinely hadn’t ever realised it affected so much more than joints. So much more makes sense now – thanks for writing. Sorry that you guys have to endure it. x
I don’t think your children have just Hypermobility. I have Hypermobility at seventeen and have had it for years. I’ve never once had a nosebleed of any kind. Hypermobility strictly affects just your joint muscles. Your children seem to have EDS. Another closely related condition that has the symptoms you mentioned that have nothing to do with HMS. Maybe you should ask your doctor cause most the time they don’t clarify if the patient has more then just plain Hypermobility but EDD involving Hypermobility. But I do know some of your fact are correct having those symptoms myself. Always standing weird, constantly having popping joints growing pains, flat feet, and differently affected joints. But the others listed aren’t a part of HMS but rather EDS.
I agree with you and believe that Erin has EDD but getting a GP to distinguish between the hms / eds is proving futile.
This isn’t plain HMS. This sounds more closely to EDS. HMS actually only affects joint muscles and joints. We do not have thin vessels, bleeding gums and weak teeth, nor is it that we need more sleep then others. The “longer sleep” comes from not being able to sleep because it is very hard to get comfortable due to the flexibility and chronic pain in our joints. While with EDS those symptoms are in line. Maybe check with your doctor to be sure they actually have HMS instead of EDS. Doctors tend to not explain this fact.
Though no two people have some symptoms in autoimmune diseases like hypermobility but you have summed up most of the symptoms pretty well. Joint hypermobility is the most common symptom.
The doctor explained that my EDS type 3 child’s difficulty learning to ride a bike is due to their lessened ability to sense where their body is in space, called proprioception. I was grateful for this information as it helped lessen the bad feelings my child had around their inability to ride still at age 12.
This made me realize, as I continue to since my diagnosis, that there might be a reason I hate flip flops and never ride bikes. Bikes are more than just fear, although fear of pain and chronic pain and balancing exercise isn’t the best combination. Thanks for writing this, I needed it (also felt the same way, that no one believes it’s that bad. EDS tends to be even worse than HMS, and HMS sucks).