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Managing EDS

This page provides information and links relating to common questions raised by the EDS community:

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The following information 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 content is for information only and is not intended to provide individual medical advice.


I've just got a diagnosis - what should I know first?
 

Having EDS affects your life in many different ways.  Most GPs are unfamiliar with EDS and there is no one HSE pathway or health professional who will deal with all the effects it has on you.  Some struggle with pain, some with energy, some with digestive issues, others with other organs - everyone is different.  This means that you need to take a more active role in managing your care than you would if it were a more common condition.  It is common to see 10 or more different professionals about your condition.

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Don't assume the health professional you're seeing is familiar with how to diagnose/treat people with EDS.  EDS is still rare and under-diagnosed.  If you're not happy with the quality of care you're getting, reach out to the community (via Irish EDS Support) to get recommendations for who you should see.  You know your body better than doctors do - trust yourself

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Related to the above, you probably have about 10 related conditions (called comorbid conditions).  Some may be caused by EDS, others may commonly co-occur alongside EDS.  If you have unexplained symptoms, share them with the community to see if other people have similar symptoms (and can guide you as to how to diagnose them).  Do expect doctors to want to test for them.

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EDS causes​ lots of different side effects and peoples' bodies are different.  There are many drugs, treatments and supports but you will need to try a lot of things to see what works.  Maybe a quarter of the things/drugs suggested to you will work (by the community or even by health professionals) - if something doesn't help, then try the next thing.  People with EDS tend to respond differently to medications/treatments than other people - it is really important to work closely with your specialist.

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Having EDS sucks, but the community (that you can access on Irish EDS Support) is here for you with ideas on how to better manage it.  You will have to work harder than most to achieve things in life, but most people with EDS go on to marry, work, have kids and live productive lives with some accommodations.

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You'll want to prioritise which symptoms are hardest to cope with, then come up with a plan.  See below for pain, fatigue and other symptoms.  You'll want to ensure your GP/consultant has referred you to EDS-aware specialists for those symptoms, and ensure the letter includes a copy of your diagnosis (so you get a faster referral).  If you want recommendations for EDS-aware consultants, share your location and ask Irish EDS Support.  You can get advice also on which services to seek privately (vs. HSE).​

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If you're parenting a younger child, keep them safe - which may mean instructing the school that they need to avoid contact sports.  If your child is sporty and less symptomatic - join the EDS Athletes group for their advice - for example, once an EDS dancer is injured, the likelihood of future injury is higher.  See below for advice on topics relating to school.

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Have forgiveness.  The average time to a diagnosis is about 10 years.  Showing forgiveness to yourself and to others is the top voted bit of feedback from the community that they would give to people who just got a new diagnosis.  This applies to parents too.

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Finally, you will always look beautiful.  Your collagen stretchiness means your skin will always look young - many with EDS are mistakenly thought to be a decade younger than they really are!  You might have an excellent singing voice with stretchy vocal chords too.

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To summarise:

  • You will need to actively manage your healthcare (and not leave it to your GP)

  • Try hard to ensure the health professionals you see are EDS-aware... and if you're not sure - ask the EDS community

  • Use our Irish EDS Support Facebook community to get support or ask specific questions

  • EDS is complex.  Prioritise 1 or 2 things you'll work on at a time.

  • Getting a diagnosis and finding the best treatments for you are often tough - be kind to yourself and others.

  • If your child has EDS, keep them safe from injury.

The top symptom of EDS is pain.  To understand how to deal with pain, you need to understand what pain is and why EDS hurts.  

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Your muscles and soft tissue aren't held together properly, and they're pulled continuously.   This sends pain signals from the joints (mostly) to the brain.  Over time, the nerves fire so much that they chemically change - they get over-sensitized and fire at the slightest pressure.  This gets worse with inflammation caused by anxiety, over-exertion, emotion or environmental factors.  Dysautonomia can cause excess adrenaline and reduce restful REM sleep, so the body heals less and inflammation doesn't decrease.  This is all intensified if you are neurodiverse too.  When moving, muscles get tense - which hurts.  Other parts of the body don't function from digestive systems with acid reflux to the lining growing outside the uterus to dental crowding.  Then the brain can receive so many pain signals that it is wired for pain causing chronic pain, and even if no part of the body were sending pain signals, the person is still in huge pain.  This is why it hurts.

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So to fix pain, you may need to (1) ensure your body is less strained (2) reduce the intensity of nerve pain signals from your joints to your brain (3) reduce inflammation (4) dampen how much your brain receives the pain signal, and (5) rewire your brain to not be over-sensitized to pain.

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Ideally, you're getting a diagnosis early while the pain is not too bad.  Regular physio/swimming/exercise is the best treatment (10 minutes gentle walking every 2 hours) - since toned muscles improve coordination, reduce stress on the body and re-align your body, which reduces inflammation - and since moving a lot rewires the brain to not feel pain.  Continuing (non-contact) sports as a child, or doing exercises from Jeannie Di Bon are recommended.  Reach out on the Facebook group to find an EDS-aware physio too - especially if joints are prone to partial dislocation (subluxation) while exercising.  (Beware non-EDS aware trainers).  More formal links on exercise are on the EDS UK sitehere on EDS Global. and on official medical sites.  Further advice is to start small and find ways to do exercise and go outside!  "Please, please, please do exercise" is advice given by community members.

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Issues with diet and digestion may also cause pain.  A low-histamine diet and/or a celiac diet may reduce pain significantly.

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If the pain is worse, you should seek help on a few fronts - and many look for medication.  Most people with EDS need something stronger than Ibuprofen.  A recent survey showed 753 unique drugs taken by the community!  Drugs in Ireland may include LDN, Naltrexone, Amitriptyline, Pregabalin, Gabapentin, Baclofen, Tramadol, Ketamine, Lidocaine and others.  These often block the brain from receiving pain signals (and can reduce anxiety, which in turn reduces inflammation as well as helping mental health).  However, these drugs are strong!  Each drug has maybe only a 20% chance of working with acceptable side effects.  If something doesn't work, you should change.  Rheumatologists / Pain Consultants will use a much wider range of drugs than GPs.  (See below too for medical cannabis).  Drugs might only decrease pain a little (some with EDS get little benefit from drugs at all) and many stronger drugs have long term side effects.  Drugs alone will never be a cure but they may help you to do positive things like exercise.  Dr Theron advises how to embrace exercise, medication and other supports in this webinar, (it is hosted on EDS UK, where you can sign-up for free to watch).

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Get supports - this includes a larger bed (not a single), great mattress with a C shaped pillow (something like this) and lots of cushions or a gravity blanket.  Get elbow/knee/ankle supports from a pharmacy.  Wear a sports bra.  Get a pack that you can put in the freezer or microwave to see if cold or hot reduce inflammation.  Get a padded cushion and an ergonomic chair if you sit at a desk.  The body braid can also hold you upright.  Ring splints can help fingers.  There's a further list on Ehlers Danlos News.  All this reduces inflammation and strain.

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There are medical procedures to reduce pain signals in the joints - they include nerve blocks/ablation (firing electrical signals at nerves in a particular part of the body so they don't produce pain... at least until they grow back a year later).  Prolotherapy injects a stimulant to trigger a healing response from a certain area.  Botox reduces the release of neurotransmitters.  All of these are typically performed by a medical specialist called a pain consultant.  Some find comfort in TENS machines or massage which interrupt the pain signals sent from the nerves to the brain.  (EDS members are curious about new Vagus nerve devices but unfortunately as of late 2024, no-one on forums has yet said they have a positive effect.)  While some use chiropractors, it can be dangerous unless the practitioner has familiarity with EDS.  Acupuncture and Osteopathy are found helpful by some.

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If someone is very unstable, a doctor may recommend certain neck braces or splints - these will help reduce pain but will cause muscles to waste, so always use them under supervision.  Dr Chopra's webinar is quite comprehensive about supports and all kinds of drugs (and which get used for what).  Sometimes however, being trained by an occupational therapist how to put a pillow under your elbow for support, or keep a hand in a pocket while walking to keep your shoulder joint stable, can be beneficial.

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If the approaches above are insufficient, it may be that you have developed chronic pain where the brain is literally wired for pain and sending pain sensations continuously.  This is when patient's get told that there is 'nothing medically wrong' or 'it is psychological' - but it is real - it is neurological pain.  These brain pathways can be changed however.  The NHS now heavily uses Cognitive-Based Therapy to get someone to work through pain.  Rather than rest until you're better and then working - you will need to work while in pain to get better.  Through distraction or relaxation, the brain rewires itself to not feel pain.  The key is to move, to work/socialise, and not to stay sedentary at home.  Dr Chad Shepherd explains this in a webinar.  A recent EDS UK Facebook discussion indicated some found this type of CBT pain clinic useful, while others did not benefit.  Tai Chi and Qi Gong are beneficial for these reasons but make sure the instructor is EDS aware.  Try Mindfulness.  Chronic Pain Ireland runs training events for adults.  Or seek psychotherapy/hypnosis from an online counsellor. 

 

The CHYP organisation helps youth in pain and is a brilliant resource for parents too.  Explanation for chronic pain in children is here.  Many children in chronic pain have a fear of getting better, in case parents expect too much of them too quickly.  This webinar on parenting young adults in chronic pain is highly recommended.​  See below too for parenting information.

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The EDS Global team runs online events where you can talk to others with EDS.  We'd encourage you to try this once to feel a bit more validated and less alone, as well as to get practical suggestions from others.

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Finally, new technologies are being developed.  For example, there is a new technology called Scrambler Therapy that uses 2 week treatment with electrical signals to force the brain to rewire chronic pain perception.  It is only available privately.  For most with EDS it gives some pain relief without side effects, but for ~20% of patients it doesn't work at all.  How well it works for patients with EDS  (rather than other chronic pain conditions) isn't yet clinically recorded.  There is a Facebook group with patients who took it / are taking it.   FSM (Frequency Specific Microcurrent) is another similar treatment.

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This is a lot of information above!  To summarise:

  • Don't accept that there's nothing you can do about pain.

  • But no one thing will fix pain - you'll need to try multiple things. It's a journey.

  • Everyone's path to recovery is different.  Doctors cannot tell you how long recovery will take.  

  • Exercise is critical. 

  • Buy the right lifestyle supports too.

  • If pain is not under control, work with EDS-aware specialists (not just a GP) - pain consultants, physios, rheumatologists, pain counsellors - to get it under control

  • You'll need trial and error to find the best drug.  Keep trying.  But drugs alone won't fix your pain.

  • If you are in intense chronic pain, you'll need to use psychotherapy or relaxation techniques to rewire your brain.

  • Use online pain charities and watch their webinars

  • Pain sucks.  If you are feeling down, consider seeking a counsellor who specialises in chronic illness or pain.​​​​  (Consider an online UK counsellor if you can't find someone local in Ireland).

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One final note is that the pain departments in public hospitals tend to have horrendous waiting lists - try a different specialty such as rheumatology if you can't go private and if your GP is not sufficiently helping.


How do I deal with pain?


How do I cope with fatigue / standing?
 

Part of why EDS is fatiguing is obvious - your soft tissue is looser so your muscles have to work harder to keep you upright or moving.  When everything hurts and you move less, your muscles may become deconditioned and then everything is even harder and more fatiguing.  If you have POTS also, you'll spend a huge amount of energy just standing up.  


When you have chronic pain, your body is inflamed and also literally working harder just to function - needing more energy and leaving you tired.

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If the person with EDS is weighed down by worry, by relationships with friends, by money/health worries - the anxiety will definitely worsen exhaustion levels.

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​​Sleep is another major factor.  One survey showed 95% of those with EDS having sleep issues - not feeling rested after sleeping.  The best video that explains what is happening is here: Dr Alan Pocinki presents "Sleep Disorders in EDS". Ideally, you sleep at night, and get lots of REM sleep which calms your body, allowing it to heal and feel refreshed.  Dr Pocinki ​shows that the stress in the body (caused by pain, inflammation, anxiety) causes the sympathetic nervous system (that makes you alert) to be so active at night that it keeps waking you up for maybe 150 micro-moments in the night, preventing REM sleep but not fully waking you up.  Digestive issues can aggravate this further.  So you're exhausted at the end of a day, and not restored after a night's sleep.  There's a paradox too that the more exhausted you are, the more likely your body is to 'over-respond' then 'over-correct' then 'over-respond' etc.  â€‹â€‹

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Many with EDS also complain about brain fog - this is a combination of poor sleep quality, pain, potentially side effects from medication, the body being in a constant state of anxiety.  In addition, there's a strong chance (between 15-50%) that if you have EDS, you are also neurodiverse.  Those with autism for example get sensory overwhelm at a greater rate, worsening anxiety, which is already high for those living with a chronic illness.  A high histamine diet may also worsen brain fog if you have histamine intolerance and/or MCAS.

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Due to all of the above, it is common for those with EDS to feel exhausted - at school, at work, raising a family, or just living.  Like pain, there isn't 'one thing' that will address your exhaustion.  Here's a great video explanation by Dr Kustow.

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Those with a new diagnosis should look up spoon theory. It is an approach that helps people pace their lives better and to think about how much energy is needed for certain tasks, so that breaks can be built in and days become less over-scheduled. Make a diary to help you figure out what is more taxing and what the triggers are... so you can avoid those triggers. There's a great video on pacing by Dr Parry.

 

Quite a few people with EDS work 4 day weeks with flexible hours / deadlines, or are self-employed so they can get breaks when they need it.  It's important that your family / colleagues support you in ways to find balance in how you get through work or life. 

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The MoveWellDaily site has a good list on how to reduce insomnia.  The EDS Society does too.  Some of this is related to what was written above for pain. 

  • Reducing pain and anxiety will improve sleep.

  • Get outside into the light! 

  • Improve breathing and water intake. 

  • Eat well and consider magnesium. 

  • Use weighted blankets. 

  • Get a bigger bed. 

  • Only use your bed for sleep. 

  • Reduce night-time anxiety by engaging your senses, avoiding stress near bedtime. 

  • If your problem is getting to sleep, try melatonin

While some of this is obvious, a lot will take deliberateness to do well.  

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During the day, think about what supports will help.  Ask for a chair (at school/work/home) with arms on it so you can get better support.  You may need an occupational therapist's letter. 

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Consider supportive shoes with ankle support (like Doc Marten, Converse) to keep you upright.  Get orthotic advice and consider custom-made orthotic inserts for your shoes to compensate for any postural challenges.  Consider the body braid to hold your posture better.  Get a shower stool (people with EDS often struggle with temperature changes, so shower stools are especially beneficial).  See also wheelchairs below.

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​Like pain, there is no single cure - it's another journey.  And progress in reducing pain tends to result in reducing brain fog / exhaustion too.  Deliberateness about improving pacing and sleep will help.

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Overall:

  • Decreasing pain and anxiety will decrease exhaustion too

  • Try hard to improve sleep with the tips above

  • Do what you can to be physically supported during the day

  • Pay attention to pacing your day

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​The top question on the EDS forums is how to deal with symptom XPain and exhaustion are covered above, as is the likelihood of a neurodiversity diagnosis.  But the bendiness of EDS can also cause issues with internal systems too.

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Lax ligaments can lead to your skeleton not holding together properly - including your skull/spine (Chiari malformation), curvature of the spine (scoliosis), your jaw, your ribs or elsewhere.  This may be experienced by pain in those regions but also dislocations or locking.  Trapped nerves causing numbness may be another effect.  The EDS UK site has many specific webinars on each area but if you're concerned, you should be referred to get scans and see the appropriate consultant or go to A&E.  Certain medical massages can help reduce tension, but we wary of chiropractors whose thrusting techniques may cause injury.  If you get subluxations, this article is helpful on how to manage subluxations.  If you do go to A&E, remember that most doctors will not know about EDS...

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If you imagine squeezing toothpaste out of a toothpaste tube, that's how your digestive system works - it passes acid/bile to the food, which digests it, then it is pushed out as waste.  For many with EDS, their gastrointestinal systems don't work properly which causes pain, discomfort, nausea, problems with constipation, difficulty swallowing or other challenges.  In consulting with a gastroenterologist, you may be given advice on diet, maybe stress reduction, maybe medication and in more extreme cases surgery.  Celiac disease is quite common among those with EDS and is worth testing to see if you need to avoid gluten.  Dr Kazkaz on the EDS UK site also has extensive advice for children.  Vitamin supplements may help  - especially Magnesium, Vitamin D, Folate, Iron, B12.  Becoming underweight is serious and may point to poor absorption of vitamins.  

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Mast cells are located within the nerves, blood vessels, stomach, brain and they respond to stimuli by creating pro-inflammatory chemicals like histamine that protect the body against allergy and infection, which in turn increase fluids and dilate blood vessels to increase white blood cells – to fight infection.  When mast cells are overactive (which for people with EDS is sometimes caused by MCAS: Mast Cell Activation Syndrome), the result is what is typically associated with allergies – itching, sneezing, runny nose, swelling, hive/rashes, nausea, bloating, intestinal/abdominal pain.  In others it may cause more significant symptoms: joint pain, migraine, shortness of breath, heart palpitations, poor sleep, or acne.  MCAS is very often managed by a low histamine diet, with flares managed by over the counter anti-histamine, but see your GP if symptoms persist.  MCAS can only be diagnosed in the UK - there is no facility in Ireland to get diagnosed.

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Most with EDS have POTS - a condition where you get dizzy going from standing to sitting or you might faint.  Blood is pooling in the lower legs and the body can't pump it to the right place when you stand up, so your blood pressure is uneven.  Generally this condition is managed by having a lot more salt in the diet (electrolyte tablets, popcorn, soy sauce and more) and a lot of water intake (buy a large water bottle!).  Avoid caffeine and don't skip meals.  Consider raising the head of your bed by 20cm.  See here for a simple explanation of Managing POTS​ or a more complex explanation.

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POTS is just one example of autonomic instability - failure to get balance when you speed up too much or don't slow down enough.  This might apply to temperature change or sweating, or to stress, or to your heart rate or vision. Raynaud's syndrome is another condition commonly associated with EDS which often causes cold/blue fingers and toes.  If you're struggling to manage things when they flare, always see a GP/consultant.

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Got a more specific question about a physical health issue?  Ask the Irish group and they will be able to suggest who you meet with to get a formal diagnosis, and ideas on what it might be so you can get the symptoms dealt with.

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Finally, a very common symptom of EDS is poor mental health - EDS may be distressing, disabling and confusing - and this unpredictability is hard to manage and adjust to.  It can be incredibly hard to live with a chronic illness - and to see relationships affected with family or work.  While some actively seek help, others can avoid the demands of chronic illness by withdrawing.  Here is a great webinar on mental health.
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For better mental ​​health, the following are recommended:

  • Try hard to get good sleep

  • Build a social connection with others

  • Allow yourself to have downtime.  Try mindfulness 

  • Stay stimulated (active brains prevent cognitive decline)

  • Keep a gratitude diary... or at least a diary of what went a bit better than expected each day.

  • Fail forward - accept you will need to try many things and they won't all work (and that's OK) - just try the next thing.

  • So many in the community would emphasise - be kind to yourself!

  • Talk to others with EDS, at least once at a conference or online video chat forums.

  • Using mindfulness can halve the symptoms of depression.

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As a final note for those with children, CAMHS are poorly trained to support children with chronic illness - they support more generic anxiety/distress and neurodiversity.  You might try to find a chronic illness counsellor online if you feel the psychologists in your CAMHS branch "don't get it".  Note though: the desire to see a therapist must come from the child to work, not just from the parent.  There's a section on parenting below too.

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You will have much more specific questions than are answered ​​​above - ask our Irish EDS Support Facebook community your specific question to get a specific answer.  

 

Overall:

  • EDS affects internal organs and skeletal stability in many people - if you think this applies to you, seek a consultant.

  • It is statistically likely that you have POTS, which causes dizziness.

  • It is statistically likely that you have MCAS causing many symptoms - try a low histamine diet.

  • Check your symptoms with the community - what you're experiencing may be related to EDS, and you'll get pointers on who to see

  • Many with chronic illness experience dips in mental health - use the tips above, but seek help from your GP or the Samaritans if lows are persistent.


Dislocations, Gastric Issues, Flares, Dizziness and Mental Health
 


How do I have more productive health appointments?
 

With so much going on with symptoms, and with the cost/delays of appointments, you will need to get the most out of meetings with health professionals. 

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Find a GP who gets it, and if they don't "get it", look for a new GP.  It's hard given the GP shortage, but you need a GP on your side.

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Looking for an appointment?  Always make sure your GP has included your diagnoses in your referral letter.  If you don't hear anything for months, contact the consultant's administrator and enquire when you can expect an appointment - this will also let you check they have assessed your symptoms appropriately.

 

If you have EDS with pain, exhaustion, and brain fog, it can be stressful.  The top tip is either to become an advocate (if you can) and speak up for yourself... or bring someone with you who can be that advocate.  This could be a family member or a close friend who can relieve you of remembering/answering everything.  This particularly helps if you fear your symptoms will be dismissed for whatever reason.  There's a longer explanation on how to master appointments.

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If you use the public system exclusively, you may face long waits.  Pay extra attention to the accuracy of what is written in referral letters to give yourself the best chance of being seen.  This is where advocacy is really important.  If you can pay privately, we'd at least recommend getting a private diagnosis as it is way faster, more reliable, and helps unlock other referrals.

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Write things down on your phone.  Write down a list of your symptoms/triggers before an appointment - apps can help here too.  Decide (and write down) what is the most important thing you want from an appointment.  During the meeting, take notes.  Ask for a copy of the reports to be sent to your house.

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As mentioned in symptoms, you might need to see a lot of specialists.  To give an idea, you may wish to see: Dieticians, Psychiatrists, Geneticists, Gastroenterologists, Gait Assessors, Neurologists, Cardiologists, Occupational Therapists, Pain Consults, Psychiatrists, Rheumatologists, Therapists, Immunologists... and a GP.  Currently, each specialist CANNOT see the notes from the other specialists so never assume the specialist has the full history.  (Hopefully legislation will change this, but it may take until 2030 for changes to roll out).  These people can't by default see each other's notes - you'll need to make sure you repeat everything with each new consultant - ideally using a short 1 page written summary that you keep up to date.

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If surgery is recommended, have a deeper discussion.  Healing times for those with EDS are slower... but sometimes surgery is critical to restore quality of life.  Make sure the anaesthetist knows you have EDS as anaesthesia may have reduced effect on you.  You might also check for bleeding disorders like Von Willebrand's disease as prevalence can be higher for those with EDS.  If you have POTS, make sure nurses are aware so they help you sit up after procedures.  Do your research on the EDS forums before getting braces too.

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Finally, if you're unhappy or confused leaving an appointment, consider sharing experiences on the Irish EDS Support Facebook community so you can learn from others... and they from you.

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To summarise:

  • Be your own advocate, or get an advocate

  • Stay on top of your referrals

  • Write things down, before and during appointments

There are a number of questions commonly asked about dealing with life.  First, it's worth re-emphasizing that it's OK to set new, realistic expectations.  Drop the guilt.  Work out how to pace yourself for the long term.

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Some people get huge support from families/partners, but they don't always react as supportively as you might wish.  Upsettingly, some may ignore or even actively disbelieve or dismiss what you're saying.  Plenty of friends and extended family will be full of advice for you or your child that you know won't work.  Generally we'd encourage you to find a particular person in your group that you can explain things to (the one you think you can win over), articulating what you need and what you feel.  Share some medical facts/EDS websites.  Do listen to their fears and frustrations as they grapple with the impact EDS is having on you - they're upset too that you're not the person you used to be.  Pick your battles, and experiment with what brings you joy.  Professional therapy may be needed. 

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EDS is costly - through reduced ability to work, increased medical expenses, and potentially a need to buy assistive supports.  You  (anyone from age 16+) may qualify for the disability allowance and free travel pass.  There's a Facebook group too where you can ask questions.  You may also qualify for the Carer Support Grant, Domiciliary Care Allowance, Living Alone Allowance or Working Family Payment. You can file a tax return and claim 20% back on all health expenses which were not covered by insurance.​  Modifications to your house may be covered but are means tested.  If you can get health insurance, do enquire if you can go on a plan with more coverage.

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Quite a lot of questions get raised about work.  What you're able for will really depend on your stamina and symptoms.  In various polls, most with EDS would work, though it is very common to not work full time or to have flexi-hours.  Some work demanding jobs as ambulance workers, someone said they grew carnivorous plants as a living, while others can't work at all - it depends.  Check out the stories on the EDS UK site.

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At work, it's important to be supported.  Physical supports are largely covered in the Fatigue section above - see if you can get some flexible breaks, try to get a comfortable chair, and supportive shoes.  Your employer is required to give you reasonable accommodations, but we hear accommodations can be harder to provide in smaller businesses.  Reach out to the Irish EDS Support​ if you have questions about your job situation.

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A different life event often requiring special planning is travel, especially airport travel.  Airports have a lot of walking - maybe 3km.  Getting wheelchair assistance can make a huge difference as invariably the staff treat you very well, and it is significantly less walking.  Request it at the time of booking your flight - you book it with the airline, not the airport.  A sunflower lanyard can help children with autism avoid more crowded areas.

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Another real big life event is pregnancy - some have a wonderful pregnancy and normal EDS symptoms subside, but for others, pregnancy can be very challenging.  There is a higher rate of risk - see the Hypermobility or EDS News Site for what to keep in mind.  You should work with your GP/Obstetrician on a management plan - to keep the mother and baby safe but also to manage your EDS symptoms which may worsen (or may get better!).  There's a specific Facebook group for women with EDS who are pregnant.​​​​​

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As a summary:

  • Family relations can be tricky - use the community for ideas, or professional therapy if you need it.

  • Explore what social/tax benefits you can avail of

  • Seek flexibility and the right physical supports at work

  • Consider a wheelchair in the airport if walking is too much

  • Work with your hospital on a plan to manage your pregnancy  (and EDS symptoms such as pain).


Life: Support, finances, work, travel, pregnancy

 


Schools and Parenting

Hopefully, your child is in an OK place with EDS - attending school regularly and participating in normal things for kids of their age.  If so, great.  Watch out for contact sports at school and tales of tripping, or digestive issues, but ideally your child is maintaining an active life.  Support them to keep this up.  Even if it means a bit more driving with lifts, etc. 

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For others, it can be really tough to support a child (or young adult) with EDS.  Pain, brain fog, nausea all make it hard to attend school, or to socialise with other youth.  Many with EDS are also neurodiverse, which is another layer of challenge.  For these parents, you are on a journey with your child to help them flourish despite challenges.

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If your child is struggling in school - there is a brilliant webinar on schools by EDS Global - use the formal diagnosis to get an Occupational Therapist pulled in to do an assessment.  Avoiding writing (and using a laptop for classes and exams), seating with arms, agreed extra breaks or time-out in the library, minimised classroom switching, can all be helpful.  Teachers need to be supportive of movement breaks or adjusting seat positions.  Reduced timetables may be necessary, or no PE.  Schools are reported by the EDS community to be a 'mixed bag' in terms of how helpful they are - try to form a partnership with a supportive teacher.  Have a strong partnership to listen to what your child says they need (not what you think they need).  Social awkwardness at being different to peers may mean they resist using supports that would benefit them.  Similarly, schools don't communicate to all teachers by default - you will need to be explicit if EDS education or something specific should be shared (and make sure your child agrees they want this - it takes emotional strength to share).  If your child has medical reasons they can't hold their bladder, you may need to share medical evidence and be quite strong if certain teachers don't respect bathroom requests.

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From other students with EDS:

  • Sometimes just sitting in class is an accomplishment – so if I look like I’m zoning out, it’s not because your class is boring or I can’t be bothered, it’s simply that I’m trying to gain control of my pain”. 

  • And: “If homework that is set isn’t done, it isn’t intentional.  Living with chronic pain causes chronic fatigue and when I get home, I might be choosing whether I can get enough rest or get on top of pain, or whether I do homework.  But asking for an explanation in front of the class is degrading and embarrassing – we might not want our peers to know what we are going through.  Ask privately.” 

  • And: Chronic illness has its name for a reason – it is long term and in some cases lifelong.  Sometimes it may seem like we are improving, but it doesn’t always stay that way.  There are good times and bad times.  We are just as frustrated about it as you are, so please be patient”.

  • And finally: "Assume you'll need to break the rules - don't carry bags, do fidget, do take breaks or days off, drink water, don't do contact sports, do what it takes to suppress pain even if you look like you're zoning out."

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If your child struggles to attend regular school, there is some online support for Junior Cert, but regrettably in Ireland there is nowhere (despite COVID...) that offers online teaching at Leaving Cert.  The UK offers private online A-Levels.  Many recommend reaching out to Community/PLC colleges as they offer part-time courses.  University is cited by many as better as colleges offer more hybrid learning and better support for students with assistive needs (sometimes including note takers).  The student will need to learn to independently approach and form a relationship with professors.  The DARE program can reduce points to allow access to higher education if you miss out during secondary school.  Generally, look for flexibility so you're not required to attend 5 days a week - which might be more achievable for many with EDS.

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Parenting a child with EDS is really tough - requiring a lot of emotional energy as well as the exhaustion of helping with appointments and life's other demands.  EDS Global run support groups on Sunday evenings, CHYP (a US charity for youth in pain) run chats (see bottom of their programs page), and you can also post how you're feeling on the Irish EDS Support Facebook group.  There are youth groups too where they can talk to peers with EDS.

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Entire books are written on how to raise youth with chronic illness but there are some key things to consider first.  Long term problems require a long solution, with slow steady progress over time.  Everyone wants the magic overnight cure, but especially if your child has been struggling with symptoms like pain for years, recovery will take a similar time.  Resetting parental expectations and ensuring you support your child and show love and empathy (not just nudging/cajoling to do regular things) is critical for the whole family's mental health - your child is not doing things because they can't do them (not because they won't do them).  They need to work harder than others to function at the same level.

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Let your child socialise even if they haven't done their homework.  Movement, getting out the house, distraction, socialisation are so critical to recovery from EDS - and socialising with others creates a 'draw' to do normal things with friends even when their body hurts.  This webinar on parenting young adults in chronic pain is a brilliant resource on 'backward parenting' - parenting a child with a chronic condition/pain is totally different to parenting a child with acute pain like a broken leg.  Functioning with EDS has to precede pain relief

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Get the basics in place - diet, gentle exercise, getting out the house, socialisation.  Remember pacing.  What works for some youth won't work for others, but try rewards, or goals or charts.  Consider asking them to go to the shops for you.  Can you start with a 1 minute walk and get up to 20 minutes each day?  If your child is neurodiverse, these changes tend to take longer.

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Love them AND nudge them at the same time.  Watch how you talk to them so they don't label themselves as disabled or think about negatives.  Don't ask "How is your pain today?" but rather "It's great to see you downstairs - I know it hurts".  Resist comments like "I notice you were in pain before but now you're chatting away to your friend..."  Children who have been out of school a while probably have a fear of getting better because they don't know who they are any more, and they worry about obligations and the need to catch up.  You'll need to reassure them that you won't layer on all the obligations as soon as they're a little better.  A therapist can help - but the desire to see a therapist must come from your child.

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​As parents, you'll have a journey with your child of ups and downs.  Recovery is when you get a few up days in a row and no downs, then the gap between the down moment increases by a few days, then by a week and so on.  School reintegration has to be slow too.  The journey can be really hard and draining for parents as well as the child. There's a further video on the EDS Global site about parenting a child with EDS.

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To summarise:

  • Being a parent of a child with EDS is a long, tough journey

  • Use your child's diagnosis to get an Occupational Therapy assessment at school 

  • There are meaningful adaptations with timetables, laptops, breaks, supports at schools that have helped others

  • Leaving cert support is tricky, but colleges are more supportive

  • Functioning despite EDS precedes getting total pain relief - so parenting a child with EDS is different

  • Resetting parental expectations is critical

  • Support your child's socialisation with friends no matter what

  • Love and nudge at the same time.

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Some key questions are how best to deal with the 13 rarer types of EDS, such as classical or vascular.  While a lot written above on pain, fatigue and other symptoms will apply to the rarer subtypes, there are particular nuances with each subtype - for example, classical EDS has significant skin-fragility.  Vascular has greater organ fragility.  People with these conditions will need more medical liaison and emergency preparedness, especially from teenage years onwards.

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The use of wheelchairs among individuals with EDS is a topic of some debate. While physiotherapy and exercise are generally recommended to manage EDS symptoms, wheelchairs can be essential for those with severe symptoms or weakened joints, enabling them to participate in daily activities, in study, at work, and at events that require extensive walking or standing, such as at school, airports or conferences. However, there is a concern among health professionals that excessive use of wheelchairs might lead to muscle deterioration, as muscles can lose a significant portion of their size if not used regularly. This can potentially worsen EDS symptoms, making it crucial for individuals to balance wheelchair use with physical activity to maintain muscle strength.

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It is ultimately a personal decision, often made with the guidance of an EDS-aware physiotherapist, to determine whether a wheelchair is beneficial. Additionally, the cost of wheelchairs can vary significantly, with basic models being relatively affordable, while more advanced, lightweight options can be expensive (up to €7000).  The goal should be to use wheelchairs sparingly and to continue engaging in gentle exercises to maintain overall health.

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Fun fact – Zebras are the EDS mascot.  This is because in medical training doctors are trained to assume the most common condition, not rare conditions.  “When you hear hoofbeats behind you, don’t expect to see a zebra”.  It’s a horse, of course!  This might work for most patients, but unfortunately means that people who DO have rare conditions can have their concerns dismissed.  So if it gallops with hooves, it could be a zebra – which is the EDS mascot.  Somebody with EDS is sometimes called a zebra.  And a group of zebras is a dazzle!

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Does Medical Marijuana work?  This is frequently raised and it is a common medication in the US with positive patient reports / feedback.  There was a really thorough review given recently by Chronic Pain Ireland.  In short, it clearly does work to reduce pain for certain individuals without giving any more of a high you'd get from other strong pain medication.  But too many studies have shown it doesn't work for everyone, there is no good way to tell up front who it will benefit and who it won't.  Everyone knows there are millions of people who want to get hold of it for recreational highs, and as the American opioid epidemic has shown, if you release a pain drug too broadly that can also be taken for recreational highs, it will spill out into the broader community illicitly and cause social problems.  So it is not licensed in Europe for pain.  This is all in addition to addiction issues with a minority of users, and societal acceptance.  More studies will be done... but the availability won't change soon.

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There are so many topics and questions that people post.

  • Do collagen supplements work?  No - you have bendy collagen, not insufficient collagen. 

  • Can Dogs get EDS?  Yes, so can some cats and horses too. 

  • Can people with EDS donate blood or organs?  No.

  • Does the weather affect symptoms?  Yes - changes in pressure affect joint pressure and fluid levels, which can lead to pain.  Less sunlight worsens mood, which may increase anxiety.  Histamine production can alter which influences MCAS symptoms.

  • And 1000s more questions!

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There's no way one webpage could answer everything about managing EDS.  But we hope this page (and what it links to) has given you some ideas of what to try.  For any further information, join the Irish EDS Support Facebook group and search previous questions or ask a new one!


Rarer EDS types, wheelchairs and more questions
 

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