Hypermobility Syndrome

Hypermobility is a type of connective tissue disorder in which there is a problem with the collagen and elastin in our bodies. This is a condition that you are born with, but you may not necessarily get a diagnosis or suffer from any symptoms until later life. It is known to be an inherited condition which means at least one parent will usually also have the condition, and upon passing it down to the next generation the hypermobility often becomes more severe. It is important to understand that the severity of the condition is different for everyone, and it is essential that the doctors assess exactly how you are affected.

What is a connective tissue disorder you may ask? Well, connective tissue is composed of two major structural protein molecules; collagen and elastin. Collagen is a strongly fibrous protein that is present in tendons, ligaments, skin, cartilage, bones, blood vessels, cornea of the eye, the gastrointestinal tract and intervertebral discs. It is the most common protein found in humans and other animals and makes up 25-35% of the total protein content of your body. Collagen supports body tissues and is a major component of the extracellular matrix that binds together, supports and protects organs.

Elastin is a major component of ligaments and skin, it has the capability of stretching and returning to its original length much like a rubber band. Elastin deficiencies can cause certain deceases and elastin loss leads to decreases in the strength, flexibility and healing ability of the skin and also reduces the vitality of hair follicles in the scalp, amongst other complications. For those that suffer from connective tissue disorders, the collagen and elastin are inflamed and the proteins and the body parts they connect are harmed. There are over two hundred disorders that impact connective tissue, each disorder has its own symptoms and requires different treatment.



In hypermobility syndrome the connective tissue is much weaker. For instance, picture an old rubber band that has lost its elasticity, you can stretch this rubber band all you like but it will not regain its shape, and the more you stretch the band, it will eventually break. This is the case for sufferers of hms, the joints are able to move past the point that they are supposed to and this can lead to subluxations, dislocations, injuries, chronic pain and other complications. There are some sufferers that only experience mild pain in few joints, and others may find that most of their joints are affected and are in constant chronic pain on a daily basis.

Another debilitating part of this condition is that energy levels always seem to be at an all time low (unless you're trying to get to sleep at night). This is because the muscles have to work a lot harder to support the joints, and because our bodies are working a lot harder than someone living without hms it is perfectly understandable to tire easily. When sufferers have so many hyper-mobile joints that are prone to dislocations or subluxations, they have such a hard time keeping themselves together and they can become very weak and unstable. Instability leads to overuse of the joints which means that there is a lot more rubbing and grinding of the bones which could then result in an early development of osteoarthritis.

[caption id="attachment_44" align="aligncenter" width="300"] A few examples of the hypermobility in joints.[/caption]

As collagen is present in organ tissue also, people with this condition may find that they could have problems with the organs that are designed to move e.g. the bowel and intestines. This is because the muscles are much more relaxed and stretchier, and they do not contract as efficiently so when digesting food sufferers may experience slow transit, dreaded bouts of gastroenteritis and conditions such as IBS.

Other conditions/complications associated with hypermobility;

* Brain fog (I hate this more than anything)
* Fibromyalgia
* Raynaud's syndrome
* Curvature of the spine
* Flat feet
* Kyphosis
* Hernias
* Neuropathy
* Carpal tunnel syndrome
* Premature ageing of the skin
* Strokes
* Heart murmurs
* Rheumatoid arthritis
* Osteoarthritis
* Autonomic dysfunction
* Insomnia
* Difficulty conceiving and carrying a child
* Chronic period pain
* Chronic fatigue syndrome / ME
* Easy bruising/scarring/fractures/sprains
* Depression
* Anxiety
* Marfan syndrome
* Ehlers Danlos Syndrome

How is hypermobility diagnosed? It is difficult to measure as the extent of the condition as you already know varies across sufferers. There is a system in which doctors can determine whether you have hypermobility, it is called the Beighton score. This is comprised of nine tests, where you demonstrate flexibility of the joints. Each test carries a score of one point, most people do not score very high but with four or more points it might be likely that you have the condition. Click here to get more information on the Beighton score.

My Beighton score is 9 out of 9, and the rheumatologist that diagnosed me mentioned that I was the most hyper mobile person he has ever met! I think he needs to get out more to be honest..

Sadly there is no cure for hypermobility, the condition can only be managed. This is done by establishing a treatment plan which could be a combination of medicine, physiotherapy, cognitive behavioural therapy, occupational therapy, surgery (which is not recommended when there non-surgical alternatives), exercise, routine and lifestyle changes. I have found that is important to find ways of managing the pain, once there is an effective pain management sufferers can improve their muscle strength, fitness and posture. A physiotherapist will help build core strength, improve proprioception and correct the movement of individual joints, but be aware that some physiotherapist treatments can make symptoms worse so make sure that they have knowledge of hypermobility.



I didn't intend for my post to be so long winded, but I wanted to give as much information as possible. I had to spend a lot of time researching and I found that there is a lot of material that contradicts other articles that I have read, and I have seen multiple consultants that have also contradicted one another. I want to continue writing about my life with this condition so others can get an insight as to what life is like with a chronic illness and to share what I find helpful with others that are experiencing the same.

It isn't all doom and gloom, I have my good days and my bad days. I cherish the little things in life, I hold onto my successes (no matter how small they are!) and I have learnt to not take for granted what I once used to. For those of you suffering from a chronic illness, you are not alone, and once I had come to that realisation I found my strength and motivation to carry on. With my strength and the love and support from the people that I hold dear to me, I will take back my life and I will live it to its fullest.

For more information and support, please visit the Hypermobility Syndromes Association.