I am a small island Caribbean girl, born in London but raised in Carriacou, Grenada. In my world and from my experience, there is a remedy for almost any illness which does not involve seeing a medical professional. Using hydrogen peroxide to clean a cut or bruise at an early age. Drinking a tea when you feel unwell, being able to self-manage comes as second nature to me.
Similarly, from conversations I have had with persons living with Hypermobility Syndromes (HMS), they usually adapt to the nature of self-management. Their risk of injury is higher than other persons. Physiotherapists and healthcare professionals highly recommend self-management skills to help people to live with their conditions and still experience life to its fullest. Working with Jo has reinforced this. 100% of her clients and service users services, access it specifically to learn and understand how to self-manage their condition/s.
In HMS, joints are generally capable of motion beyond what should be the normal end of range due. This is due to abnormal collagen composition in the soft tissues surrounding the joint, and so injuries can occur. Other factors that also increase the risk of injuries include comorbidities like syncope and Postural Orthostatic Tachycardia syndrome. The list of injuries that can occur is exhaustive but here’s a few common issues I found.
These are very small injuries that can go noticed when they occur. They can arise from repeatedly pushing past the ‘normal’ end of range. Over time these increase the likelihood of recurrent or persistent pain. They can also contribute to early joint degeneration such as osteoarthritis (OA), subluxations and dislocations, ligament strains and tear and inflamed tendons. Understanding and performing movements with skill and precision is key to managing the risk of micro-traumas which can lead to more issues.
SUBLUXATIONS & DISLOCATIONS
To understand how to manage these issues, first it is necessary to grasp the concept of what these issues are, as they are quite similar.
A dislocation is considered a complete displacement of a bone, or bones, from its natural placement in the joint, whereas a subluxation is similar, but is a partial dislocation, in which the two bones forming a joint are still partially in contact with each other. Subluxations are no less stressful than having a full dislocation. The frequency of these can be as little as once or twice year, to as much as a couple of times a day or month. Because of this it is crucial to be able to manage this independently but also when to seek support. The following six principles are suggested:
- Use slow and relaxed breaths to help you take charge and control of the situation, as painful and distressing as it may be
- Ensure you use the most appropriate analgesia as prescribed. If you have not been prescribed pain relief, it is worth speaking to your GP about this. This is the next step in taking control of the situation as you are taking control of your pain
- Make yourself comfortable using pillows or a sling to support the joint. This helps relax the muscles and reduce/stop spasming which allows you the joint to rest in a less stressful position.
- Try heat- Hot water bottles/heat packs/wheat bags, a warm bath/shower can help relax spasming and overactive muscles
- Distract yourself. Taking the focus away from the pain and the situation is a short-term strategy for pain relief, which can also assist in relaxation
- At times a gentle massage can help in relaxing the muscles enough to relocate or allow it to ‘pop’ back into place independently. This can also be beneficial in the aftercare to help relax.
As the saying goes ‘Prevention is better than cure’. Physiotherapists can teach/prescribe exercises/activities to strengthen the muscles surrounding joints and improve proprioception/spatial awareness. Using braces, splints, taping or supports can prevent injuries by avoiding/adapting movements which can trigger the joint to sublux or dislocate. By all means, feel free to google your local physiotherapist if you do not already have one and self-refer for appointments and advice.
EARLY ONSET OSTEOARTHRITIS
OA is usually the result of wear and tear in the joints however with hypermobility the chronic joint instability can result in increased mechanical stress which leads to early onset OA. There is no evidence really suggesting OA is worst in people with hypermobility syndromes compared to persons without. Like with everything in managing your hypermobility syndrome, its key to making your management work for you, here are some ideas that you may want to incorporate in your life…
- Keeping a healthy weight through:
– Physical Activity– it is known that people with HMS are prone to more fatigue and pain which can limit how much they exercise, being in a constant cycle managing factors associated with HMS in collaboration. But little is better than none. A physiotherapist can help by tailoring exercises including strengthening, balance and aerobic activities to suit your symptoms. The right strengthening exercises can reduce pain in other activities which can help with movement patterns. Swimming, cycling, pilates, and tai chi are examples of low-impact exercises which can be beneficial in increasing physical activity.
– Diet & Nutrition- having a balanced diet helps keep weight under control especially as exercising can be limited. Dieticians and Nutritionist would be ideal to support this need. Speak to your first contact healthcare professional about referrals.
- Protect your joints- if you are highly prone to subluxations and dislocations, wearing a splint, brace/elastic bandage or taping whilst exercising can prevent these from occurring. Low-impact exercises will play a role in reducing stress on the joints
- Again, taking analgesia as prescribed can help keep the pain under control and allow you to possibly carry on with your life.
There is an association between HMS and tendon injuries (tendinopathies) due to repetitive actions. Tendinopathy is a generic term used to describe conditions resulting from overuse in and around tendons. Tendonitis refers to a swollen (inflamed) tendon. Likely areas affected are, shoulders, elbows, knees, and ankles. Management for this includes:
- Managing pain with appropriate and/or prescribed analgesia
- Improving strength of muscles which in turn increases stability with tailored exercises
- The use of orthotics such as taping, night splints and braces are tools to help control movements and allow recovery in both the acute and chronic stages. However, it is advised not to use night splints and braces in the chronic stage in conjunction with eccentric exercise as this can cause more muscle damage and soreness than impact in positive ways.
Consider using taping in the early stages and if the support received is insufficient you can progress to splints and braces.
SPRAINS & STRAINS
A sprain is a stretch and/or tear of a ligament. A strain (or ‘pull’) is a stretch and/or tear of muscle fibres and/or tendon. Sprains and strains can be a result of abnormal movement patterns or recurrent subluxation and dislocations. The PRICE strategy, an adaptation of the RICE technique previously known to many is advised for the first 48-72 hours of injury. It is not necessarily specific to HMS but follows this format:
- Protection– from further injury, using adequate support such as taking the weight off, or wearing a splint following injury.
- Rest– limiting activity for the first 48-72 hours following the injury. Fully avoiding activity may not always be ideal, so rest can mean getting or accepting help, reducing the amount you do, using walking sticks/crutches/slings.
- Ice– applying ice or ice pack wrapped in a damp towel for 15-20 mins every 2-3 hours during the day can help minimise swelling, bleeding, and pain. Heat can also be used or used simultaneously with ice to help reduce muscle spasms, pain and speed up rate of recovery. It is advised that you do not use whilst asleep to reduce the risk of ice burns and skin damage.
You can alternate between hot and cold treatments to figure out what works best for you.
- Compression– with a simple elastic bandage or tubular bandage that is snug but not tight to help control the swelling, promote drainage and support injury. Also advise not to use whilst asleep as it can interfere with blood circulation.
- Elevation– keep the area supported on pillows until swelling is controlled. Avoid prolonged periods of elevation if there is visible injury like a bruise.
As is known, stress and anxiety can change/heighten the way we respond to pain and trauma and so decrease how effective one is with managing. Hence knowing when to go to the A&E is important. There comes a point in time when self-management will not suffice. The following are tips on when ‘enough is enough’.
- Your normal management strategies do not work.
- So, you have gone through your list of how to manage a certain injury, have obtained advice (from 111 helpline for example) and nothing seems to be working, have waited out the ‘grace period’ which is about 2-3 days and is still struggling to either put back/keep the joint in place or reduce the swelling.
- You begin to notice the limb starts to feel numb or change colour, becoming discoloured, (black/blue/purple/white- depending on your skin tone). This discolouration and numb sensation would indicate lack of blood supply.
- The pain is increasing instead of decreasing even with analgesia
- There is a visible tear in muscle belly or tendon which is noticed by localised bleeding, increased pain and tenderness in an area and in severe cases, the swelling and pain may increase significantly in conjunction with reduced or loss of function.
- There is a visible collection of blood under the skin, seen as discolouration
- Weight-bearing becomes increasingly difficult, or symptoms worsen.
If you experience any one or more of these, it is time to seek medical help, as these can indicate a various of things happening on the inside.
All individuals are different, the way in which hypermobility affects persons can be placed on a spectrum as its presentation is so different. Hypermobility cannot be cured so learning how to manage the issues and injuries that can happen is important for living full and active lives. It can be challenging dealing with extensive symptoms at the same time but getting help to manage the most difficult ones are advised. For management to be successful you must have/feel some sort of internal sense of control. Reviews by Jane with hEDS noted the key is pacing and looking after body and mind health in conjunction with knowing limits .
As I mentioned in the beginning the list of injuries that can occur is extensive, but I aimed to target the main and most common ones, the surface level injuries. Peeling back the onion skin can undercover more issues people with hypermobility face either due to these ‘surface’ injuries or other aspects of their condition and diagnoses. Being able to manage those first layer injuries can make it easier to manage the others that occur as a result. The suggestions listed may not be appropriate for everyone, so ensure whatever you choose to try is safe for you and considers any other condition you may have. Finding the right techniques can take a longer time but just ‘Trust the process…’.
I hope this was beneficial for you as it was for me doing the research.
If you have a hypermobility syndrome diagnosis and experience injuries such as the ones named above, share your experiences! Let us know what works for you even if it isn’t listed.
About the Author
I am a student Physiotherapist from University of Brighton, currently in my final year but on my second placement.
I have always been interested in the healthcare field, studying, and enjoying the sciences at school. When I am not actively studying PT, I am support worker for people with learning disabilities and a hairdresser which was first a hobby.
In primary school, I wanted to be a doctor, until my interest in children grew and Paediatrician became my new dream job. Then this changed to nurse/paediatric nurse in secondary school/sixth form until I realised a Physiotherapist is who I wanted to be. After evaluating and comparing possible professions, I was sure this is where I could, and wanted to make a difference.
What made PT stand out amongst all the other healthcare professions?
For me, I wanted a profession where I can be active and visually see rehabilitation of individuals. At that point, I only saw PT as rehabilitation and never considered the aspect of maintaining one’s health and quality of life, whilst decreasing the rate of decline.
I have always wanted to make a difference in people’s life, even if it is one person. I haven’t fully figured out how yet, but I know being different in my practice is a step in the right direction.
I will finish my degree in summer 2022 and I am determined to make the most of every learning experience until then to be valued in this field. My aim is to be a voice and impact the minority, the persons who go unnoticed, the persons who feel ignored the most. I am very open to where my PT journey will lead but excited.