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. However there are 8 Things You Probably Didn’t Know About Hypermobility Syndrome.
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.
8 Things You Probably Didn’t Know About Hypermobility Syndrome:
- Nosebleeds. 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. 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.
- 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. 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 hospital for the day to be monitored.
- Flat feet is common and 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 co ordination 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 wouldn’t attribute to hypermobility syndrome?