Building your own EDS toolkit

Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.

This article contains information provided by patients and it should be taken as their own opinion not that of medical professionals. Self management is an important part of managing EDS and HSD but we always recommend discussing self management techniques with a medical professional first. This article was published in the Summer 2020 edition of Fragile Links, so is currently only available to Fragile Links subscribers.

We know that having an accurate diagnosis is important for many reasons. But, once diagnosed, people are often left to manage their symptoms themselves. Diagnosis for quite a few of our members has been ‘by chance’, for example when they have consulted a specialist about a problem that seemed unrelated. We’ve heard from many of you that once you know what you’re dealing with, you can do your own research and start to assemble your own ‘toolkit’ to help manage symptoms. Here, we’ve pulled together some useful tips shared my members at our support groups around the UK.

‘Friendly’ specialists and therapists

Local support groups and our volunteer Area Coordinators are often a great source of information about sympathetic or knowledgeable local healthcare professionals and therapists. EDS UK is always keen to hear about positive experiences. We then make contact with the professional and ask for their permission to hold their details on our ‘friendly specialists’ list. This means the information can then be shared with those who contact our helpline.

Several members said that occupational therapy (OT) input had been be very helpful for them. Some people find even minor adaptions to their homes can make a big difference – for example a different type of shower; a tipping kettle. Occupational therapy advice can also be key to helping young people overcome challenges at school or college. We recommend talking to your GP about accessing NHS occupational therapists. In some areas it is possible to self-refer to OT. Private appointments are also available.

Managing pain

How to manage long-term (chronic) pain is a regular discussion topic in our support groups. What works for one person doesn’t work for others and, like a lot of aspects of EDS and HSD, some trial and error is needed. We hear that most people have to find solutions other than prescribed medication for pain as it’s often not enough or stops working after using it for a long time.

Many people find heat is useful. Long, wrap-around microwavable heat packs (such as Hotties) which can be used around the waist and hips are particularly popular. Hand-held massagers such as the DrGraeme massagers are also highly rated by members to ease muscle pain.

TENS (transcutaneous electrical nerve stimulation) machines can be helpful for some joints. People report them being useful while they are on but don’t find them a long-term solution. Some osteopath clinics may loan you a TENS machine to try out if you are thinking of buying one.

If you are comfortable applying products to your skin, magnesium spray, cream or gel helps some people, especially with leg cramps or restless legs at night. Capsaicin cream (which contains the substance from chilies which makes them hot) has also be found to be helpful.

Kinesiotherapy tape (KT Tape) can be useful to support joints and aid recovery. There are many different brands available from Amazon, Physio Room, Rock Tape, and other retailers, however the tape can irritate sensitive skin, produce allergic response, or damage very thin skin. Some members of our community advise wetting the tape to remove it or using Pepto-Bismol or specific ointments underneath as recommended by their physios to help with this.

Distraction and relaxation techniques can help too – listening to audiobooks and podcasts; crocheting (which unlike sewing and knitting, can be done lying down), mindfulness and guided meditations of which there are many on YouTube (also see the By Members, For members section in this magazine). Many of you also get comfort and distraction from your pets.

Pacing

Pacing is an important part of the self-management of EDS and HSD and can help with fatigue and pain. Working with a traffic light system can help to manage this well.

Dividing activities into three categories depending on the level of energy they take creates a ‘traffic light system’.  Green is for easier tasks, such as answering a couple of emails or making a bowl of cereal.  Amber are tasks which take a bit more energy, for example preparing a simple meal or taking a shower.  Red tasks take a lot of energy: going for a dog walk or attending a medical appointment.   These tasks are very personal to each individual and can be adjusted as such.  There should only be one red task a day. If you find you have a day with two or more red tasks planned, look at adjusting this to enable you to pace and avoid a boom and bust cycle.  Stickman Communications has a fab fridge magnet set to help you organise your traffic light system: https://stickmancommunications.co.uk/product/pacing-fridge-magnet-set/

Mobility aids

Members shared their experiences of overcoming the psychological barriers to using mobility aids. People talked about having their ‘worlds opened up’ by being able to get out and about and participate more fully once they had an aid that worked for them. A good OT can help to explain to other healthcare professionals or funders how something like a wheelchair can be beneficial, even if it is not needed all the time. Aids such as Smartcrutches™ and collapsible canes were also seen as very helpful to increase mobility. Smartcrutches™ have helped people who have wrist problems and have struggled to use traditional crutches and canes.

Exercise

We’ve heard some concerning stories about exercise advice given to people with EDS and HSD, sometimes by professionals. The right type of exercise is central to managing a range of EDS and HSD symptoms.  It can take a long time to increase the stability in your joints through exercise so it’s important to find exercise that works for you. You’re likely to need to do something every day. What works for one person might make things worse for someone else. Get advice from an exercise professional who has experience with hypermobility, preferably someone who has been specifically trained in managing hypermobility.

It would be impossible to provide an exhaustive list of exercises suitable for everybody in an article like this as each of you will have different needs and physical issues. However, there are some generic principles applicable to everyone that can be followed when it comes to exercising. Jason Parry provides a comprehensive overview of these in an article on our website ( https://www.ehlers-danlos.org/information/exercise-and-movement-for-adults-with-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/).

One example of a simple exercise from our support groups is a stretching exercise which can be done in bed or sitting in a chair – stretch your leg out, point your toes and make shapes of the alphabet with your feet. Do each foot separately and repeat daily. This helps with ankle swelling and stability.

There were mixed views about the benefits of swimming. Some people found it very soothing, as the water supports your joints while they are moving, minimising pain. Other people found that warmer pools triggered PoTS symptoms or that they struggled to get in and out of the pool. In these cases, it was recommended to look for accessible swimming pools. Some have dedicated sessions for people who are less able.

Some special needs schools have hydrotherapy pools where you may be able to arrange access for a lower fee than through a private provider. Hydrotherapy is also offered as part of hypermobility programmes at some hospitals in the UK.

Some hospital physiotherapy departments run Pilates sessions. These are often adapted for people with specific joint problems or conditions.

Diet

Some of our members have found some relief for their symptoms using the low FODMAP diet. This diet is clinically recommended to help manage irritable bowel syndrome (IBS) and is based on reducing or eliminating foods which are high in fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAP).

The diet is complex and can be difficult to follow, especially long-term. It is certainly not for everyone and research is still needed to test its usefulness in conditions other than IBS. As with all significant changes to your diet, it is important to make sure you are still getting all the nutrients your body needs. It is recommended to talk to a FODMAP-trained dietician before starting the diet. Your GP practice should be able to refer you. If you want to see a dietician privately, make sure they are registered with the British Dietetic Association (BDA).

If you do decide to give it a try, there is lots of information and hints and tips online and in cookery books specifically to help people who are trying to follow it. There are also products available in supermarkets and health food shops to substitute some of the foods to be avoided on the diet, for example asafoetida (or Hing) powder to replace onion and garlic. Please check the allergen information carefully though!

There are two excellent webinars on the low FODMAP diet, by NHS dieticians, at: https://patientwebinars.co.uk/condition/ibs/webinars/

Working with healthcare professionals

A key part of your toolkit will be working positively with healthcare professionals, either those you are already seeing, or those you get referred to. As EDS and HSD symptoms affect the whole body, most people won’t have one doctor or therapist who can deal with everything but GPs play a key role in helping you, coordinating your care and of course, involving specialists, when this is needed.  Working at building up a good relationship with your GP will be beneficial in the longer term. EDS and HSD are complex, life-long conditions and your GP’s involvement is unlikely to be short-term!

Understand your doctor

Your GP may well feel at a disadvantage. They may have barely heard of EDS or HSD, let alone know anything about them. The range of symptoms and diverse ways the different types of the conditions affect people is also a huge challenge for medical professionals faced with it for the first time. Reassure your doctor that you are not expecting miracles but would appreciate his/her help and support to make your day-to-day living as acceptable as possible.

The Royal College of GPs’ EDS toolkit, developed in partnership with EDS UK, is aimed at helping GPs to spot hypermobile EDS and hypermobility spectrum disorder. It guides GPs through how they can support their patients in managing the most common symptoms. The toolkit will be updated later this year and can be found online at rcgp.org.uk/eds.

GPs are specialists in people not just diseases. They are intended to be the patient’s advocate and can help to interpret information and advice from specialists and to work with you to apply medical advice to your specific circumstances. This is particularly important where information from different specialists may be conflicting or unclear.

Preparing for appointments

Consulting a doctor can be a daunting prospect. You are looking for help, you do not want to be classed as a time waster and you may rehearse what you are planning to say over and over again. The consultation is a two-way process. The doctor can help you best if you can explain what you are hoping for as simply and as concisely as possible. Remember, GP appointments are usually allocated in 10 minute slots. Be realistic about what can be achieved in this time, especially if it’s the first appointment to discuss something. Sometimes you may be able to book a double appointment if your issues are more complex.

There will not be time to go through your full medical and family history in a single appointment. If you have multiple symptoms or problems you would like help with, choose the one which is causing you the most difficulties or you are most concerned about. It is worth keeping a symptom diary if you can. Some GPs find these useful to see the pattern of symptoms over time. It can also help you to remember what has happened in between appointments.

It can be helpful to the GP to come prepared to talk about your:

• Ideas (what you think might be wrong or going on in your body)
• Concerns (any serious condition you would like ruled out)
• Expectations (what you are hoping the doctor will do for you today)

However, these are likely to result in a discussion and may not necessarily lead to the outcome you were expecting or wanted.

Consider using an e-consultation (electronic consultation or online consultation) with your GP, if this option is available to you. With these systems, you are usually taken through a series of questions to answer online. Your responses are looked at by a GP, who can then choose a number of different options. They may advise you, either online or via telephone, arrange tests or a prescription. If you progress to a face-to-face consultation after using the online service, this is often more constructive as the GP has been able to go through and think about the information you have provided in advance.

Referrals

We are sometimes asked what to do if a GP won’t refer you to a specialist. Only one in 20 GP consultations result in a referral to a specialist and this can be for a variety of reasons. GPs can only refer to specialists where they exist – for EDS/HSD, as we know, there are very few doctors who have in-depth knowledge about all aspects of the conditions.

If you have asked your GP to refer you to a specialist and they have not done this, listen to their reasons and ask what they plan to do instead. Then, go home and consider this carefully. Remember that it may be months before your appointment comes through and your GP may be able to try other management strategies or arrange certain investigations before referring you. Sometimes this may resolve your problem more quickly, and on other occasions it will mean that you get more benefit from any subsequent specialist appointment. We recommend you try the management your GP has suggested and, if it doesn’t help, go back. Keep doing this if your problem doesn’t improve. If you think your GP might be wrong, go back and explain clearly and calmly what you hope to achieve from a referral.

If you are referred, we suggest making a list of the issues you’ve been having from when you were younger until now to give the doctor an overview. This also means that you don’t forget anything when you’re in your appointment.

Make notes and ask questions

It can be valuable to have a friend or relative come into a consultation with you especially if you are anxious or depressed.  Your companion can give you moral support and maybe make a note of what the doctor is advising you. It can sometimes be hard to remember all that was said once you leave the appointment. Do ask questions if you are unsure what the doctor is saying or if you want him/her to explain further. It is important you are aware of all the facts and fully understand what he/she is saying.

Working with a physiotherapist

Whether you are referred to physiotherapy via the NHS or privately, your initial appointment usually starts with what is known as a subjective assessment. This is basically a conversation, or an information-gathering exercise if you prefer, during which your physiotherapist aims to collect as much information as possible about you and your problems, and then uses this to determine what physical and functional difficulties you have. This should also guide them as to what to choose to look at when they go on to physically assess you.

The key areas it is helpful for your physiotherapist to know about during the subjective assessment are:

• Pain: where you have it, nature and severity
• Dislocations/subluxations (clicking, popping, etc): where, how often, how do you get it back in place?
• Fatigue, dizziness, digestive symptoms: how often and for how long? Do you faint? Do you have any allergies?
• Current order of most problematic areas: really helps to prioritise what to deal with first
• Previous interventions: what’s worked well before, what hasn’t?

• Past medical history: need to know about other medical stuff going on
• Medications: what are you taking, does it help, are there side effects?
• Social history/lifestyle: home set-up, do you work, socialise, have friends/family?
• Functional difficulties: how do you cope with everyday tasks?
• Issues of anxiety, mood and confidence

The subjective assessment is usually followed by a physical assessment. As the name suggests, this involves moving various bits of your body and can be a bit uncomfortable but it serves a really important purpose. So, try to trust your physio and take your time.  A good, basic physical assessment will usually look at your:

• Posture
• Range of movement
• Strength
• Stability/proprioception
• Gait/mobility

It is only after these two assessments that a treatment plan can be put in place. If there is a lot to discuss in your subjective assessment, your physical assessment may not be finished in one appointment. It is only after both of these assessments have been completed that a treatment plan can be agreed. No physiotherapist can treat everything in one go. We recommend going with realistic expectations and setting realistic goals. Help guide your treatment – provide a clear, concise history and a problem list. This gives both you and your physio something to work towards.

Follow the advice your physio gives you, then give feedback at the next session as to whether it is helping. Don’t decide by yourself to start changing and altering things that your physio has given you to do between sessions (unless it’s causing you raging pain) otherwise they won’t know whether what they’re doing is working or not.

Medical allies from other disciplines

Some people have found a medical ‘ally’ from perhaps unusual sources, for example a gastroenterologist, a cardiologist, a dermatologist or pain psychologist. In some cases, they have been key to getting a diagnosis or a change in management plan by writing letters to other medical colleagues, giving their views.

Community pharmacists can be excellent sources of advice and information and usually have more time than GPs. Consider building up a relationship and helping them to develop an interest in your condition, if they don’t have one already.

Awareness of EDS and HSD is improving in the medical community but these are complex, life-long conditions which are difficult to spot and challenging to manage. While the healthcare professionals you come across may not know very much about your condition, if they open-minded and willing to listen, try to build up a good relationship and work with them to help them learn. Remember to let us know about positive experiences too!