#why would I not try to prevent pain and the damage that hypermobility and subluxations/dislocations do over time???

[werewolf-transgenderism]

saying again that if a mobility aid or piece of assistive tech or whatever will improve your quality of life and make it easier to get through your day just fucking use them!! you don’t need a diagnosis to use something that will make your day-to-day life easier. a diagnosis will maybe give you some more specialized ideas for what assistive devices or mobility aids might be useful but you do not have to wait until you have one to start using things that reduce symptoms or make life easier to manage.

[charlottewalkeraub]

Factual Text

I have looked at what text I could use for the informative pages in my book. I realized I need to sort my book into sections for each of the symptoms and find out information for each of these that explains Hypermobility in the most simplistic way.

Dislocating/Subluxating:

Hypermobility Syndrome can cause dislocations and subluxations of joints.

A dislocation is defined as “displacement of a bone from its natural position in the joint”. This is where the two bones that form a joint fully separate from each other. This can happen in any direction, but the main point is that the two bones completely separate.

A subluxation is basically defined as “a partial dislocation”. It can be no less painful than a full dislocation, but the two bones that form the joint are still in contact with each other.

Because the joints can dislocate or subluxate, people with Hypermobility Syndrome are more supple and can bend more than most.

This is why there are many misconceptions about Hypermobility being just about being bendy.

These events can happen in almost any joint, but some are more commonly involved than others, with shoulders, knees, thumbs, and ankles seemingly the most prevalent.

Clicking joints:

Dislocations/subluxations can cause popping, cracking or snapping noises. Clicking can happen spontaneously or deliberately however it is normally nothing to worry about despite the audible noise.

Painful joints:

There are many different causes of pain in JHS.  The pain can be severe and widespread or localized to a joint.

Some of the types of pain are, Pain in the joints from dislocation or recovery from a dislocation, Headaches, Pain with daily tasks such as writing as often the fingers are loose and the pressure used to write can cause over stretching pain. Standing comes with pain in the knees and hips. Pain in the back due to laxity of the spinal ligaments. Muscle stiffness and tightness caused by the extra work muscles have to do to try and keep a hypermobile  person's joints stable.

Dizziness and blackouts:

JHS can also cause abnormalities in the part of your nervous system that controls bodily functions you do not actively think about. This is known as your autonomic nervous system.

These abnormalities can in extreme cases cause fainting and blackouts. This is because the blood vessels are as stretchy as the skin in JHS and therefore can struggle to produce enough pressure to pump the blood around the body upon standing. 

This can mean not enough blood is pumped to the brain in time and cause a blackout. Laying down and standing up slowly can help to prevent this.

The heart rate can also be affected when stood up, as the heart needs to pump harder in order to fight the lower blood pressure. This can cause extremely fast beats and palpitations that can be uncomfortable.

There are many factors that can make this issue with the autonomic nerous system worse. These include, hotter weather, being hungry or dehydrated and drinking alcohol.

Fragile/stretchy skin:

The different structure of the skin in Joint Hypermobility Syndrome makes it more fragile and stretchier than normal skin. 

Depending on the person and the location of the skin, it can be pulled to around 3cm from the surface. When the skin is stretched, upon release, it recoils back to its original shape as elasticity of the skin is retained.

In Joint Hypermobility Syndrome, the skin is also thin and therefore fragile. The skin can split easily, especially over areas such as knees and elbows. Poor wound healing can mean that once the skin has been damaged it takes a very long time for it to heal and therefore cause more fatigue.

As well as being stretchy and fragile, the skin in JHS can also be relatively transparent. This can mean the veins and arteries beneath the skin are more visible.

Fatigue

In non-hypermobile people, joints are held firmly in place by the ligaments. Current thought is that in hypermobile people their ligaments tend to be stretchier, therefore, muscles must take on part, or all, of the work in order to compensate.  

Having to work so much harder means that the body’s muscles fatigue far more easily and more quickly than those in someone who is not hypermobile, leading to an overall feeling of fatigue.

The pain felt in JHS can also occur at night causing poor sleep and even insomnia which can contribute to the feeling of fatigue.

Constant fatigue can make life very challenging. Because of the feeling of tiredness it can be difficult to make sense of simple things.

Using the internet and editing into my own words I have come up with some key points I would like to focus on in the book. It was important to me to keep the information simple and not go too deeply into the medical/scientific elements and not use too many complicated words. This is because I want my book to be very easily understood. I feel too much complication will put people off reading and therefore understanding. 

I could perhaps have more complicated text next to the more relatable designed quotes, however I still feel going into medical details will jar the message I am trying to tell through my book.