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Other conditions

There are many other conditions that can be associated with EDS and HSD, and these are known as comorbidities. On this page, we cover the more common ones.

  1. 1 Postural Tachycardia Syndrome (PoTS)
  2. 2 Mast Cell Activation Syndrome (MCAS)
  3. 3 Gastroesophageal reflux disease (GERD) & Gastroparesis
  4. 4 Bladder and bowel issues
  5. 5 Temporomandibular joint (TMJ) dysfunction
  6. 6 Chiari malformation
  7. 7 Scoliosis and other spinal problems
  8. 8 Cardiac abnormalities

Laura explains.

‘Postural orthostatic tachycardia syndrome known as PoTS is when the heart rate increases very quickly after sitting or standing up.

Heart rate increases to more than 30 beats per minute (40 beats per minute in young people aged 12-19) within 10 minutes from sitting/lying to standing and usually, blood pressure remains the same.

PoTS is when the autonomic nervous system malfunctions and is sometimes called dysautonomia. The autonomic nervous system controls functions that our bodies do that we don’t think about such as sweating, digestion, regulation of heart rate and blood pressure and the fight or flight response.

A postural change is when people go from lying to sitting to standing. When a healthy person stands up, the blood vessels squeeze and push the blood around the body back to the brain, and the heart rate and blood pressure increase slightly to allow this. In a person with PoTs, the blood vessels don’t squeeze very well so the heart has to pump the blood harder around the body therefore the heart rate increases rapidly.

PoTS is associated with HEDS, HSD and MCAS.

Symptoms of PoTs

There are a range of symptoms for PoTS but some symptoms can improve upon lying down when you lie down and can occur upon sitting or standing up. Common symptoms include:

  • Dizziness
  • Fainting or almost fainting
  • Heart palpitations (like a butterfly in the chest)
  • Shaking and sweating
  • Chest pain
  • Shortness of breath
  • Bladder and gut problems such as nausea and tummy pain
  • Visual problems such as blurred or tunnel vision
  • Problems with circulation such as cold, purple hands and feet
  • Fatigue
  • Brain fog
  • Exercise intolerance

Symptoms can be worsened by hot temperatures, eating a large meal, doing exercise and being dehydration.

Ayeesha says ‘For me my pots symptoms started with presyncope. I thought i was just standing up too quickly, however my mum got a diagnosis and i soon realised the symptoms she was describing i also had. My heart rate was going up to 150 bpm just from standing up and with all the other problems with my body this was having an extreme knock on effect on my health. Due to the limited spaces available with specialists my referral to the PoTs clinic was refused, this obviously wasnt nice to hear but i persisted and the GP prescribed me a beta blocker to help me slow my heart rate down. Young people can have PoTs however people are made to believe that just because we are young and look fine that we are automatically healthy. This is far from the truth and if you know something isnt right dont stop trying until you get the help you need. PoTs UK is a great website for more advice.’

 

Emily explains.

‘Gastroparesis, also known as delayed gastric emptying, is a condition where food passes through the stomach too slowly.

Symptoms of gastroparesis include nausea and vomiting, bloating, heartburn and tummy pain.

Gastroparesis is typically diagnosed through a gastric emptying study, which measures the amount of time it takes for food to empty the stomach.

Treatments for gastroparesis include medications (to speed up stomach emptying), dietary changes (including smaller meals or a liquid diet) and feeding tubes.’

For more information go to https://gutscharity.org.uk/advice-and-information/conditions/gastroparesis/

Emily explains.

”Gut Dysmotility describes an abnormality of the muscle movements that control the speed of digestion. This may cause the gastrointestinal tract to become ‘sluggish’ (move too slowly). This problem can be present in some or all parts of the digestive system, from the oesophagus to the anus.

This can cause symptoms such as abdominal (tummy) pain, nausea and constipation.

Tests used to diagnose gut dysmotility include transit studies and small bowel scanning.

Treatment options vary on the severity and symptoms of the condition; however some options include medications and dietary changes.’

For more information go to https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/lower-gastrointestinal-dysmotility-assessment/#:~:text=If%20a%20section%20of%20the,gastrointestinal%20motility%20problem%20or%20dysmotility

Emily explains.

‘Mast Cell Activation syndrome (MCAS) is a condition which can develop at any age.

In people affected by MCAS, chemicals called mast cell mediators are released too frequently and/or in response to triggers that are not typically considered to be harmful (for example; foods or chemicals in the environment). This can lead to a wide range of symptoms that affect multiple parts of the body, such as the digestive and respiratory systems.

Some common symptoms include hives, food allergies, a high heart rate and nasal congestion.

Blood tests may sometimes be used to help diagnose MCAS.

MCAS is usually controlled with a combination of self management (such as avoiding triggers) and medication.’

For more information go to

https://www.mastcellaction.org/about-mcas

A Chiari malformation happens when the lower part of the brain (the cerebellum) sits lower than normal and pushes down through the opening at the base of the skull.

Imagine trying to fit a slightly oversized pillow into a pillowcase—the contents get squashed and pushed where they shouldn’t be.

This can interfere with the flow of spinal fluid and put pressure on the brain and spinal cord, causing symptoms such as:

  • Headaches (often worse when coughing, sneezing, or straining)
  • Neck pain
  • Dizziness
  • Balance problems
  • Numbness or tingling
  • Difficulty swallowing
  • Vision problems

How are EDS and Chiari connected?

People with hypermobile EDS (hEDS) appear to have a higher rate of Chiari malformation than the general population.

One theory is that because connective tissues and ligaments are more lax in EDS:

  • The structures supporting the head and neck may be less stable.
  • The skull, spine, and brainstem may be affected by this instability.
  • This can contribute to Chiari malformation or related problems such as craniocervical instability (CCI).

Not everyone with EDS has Chiari, and not everyone with Chiari has EDS, but doctors who specialise in these conditions often look for both when symptoms suggest a connection.

Emily tells us more.

‘Scoliosis is a condition in which the spine abnormally twists and curves to the side. It can affect anyone of any age, and is more commonly seen in some types of EDS than in the general population.

Signs of scoliosis include a visibly curved spine and uneven shoulders. An x-ray will be used to confirm the diagnosis and the severity of the condition.

Treatment options include physiotherapy, spinal bracing and surgery.’

For more information go to https://www.nhs.uk/conditions/scoliosis/

TMJ stands for temporomandibular joint — the hinge that connects your lower jaw to your skull, just in front of your ears. It lets you talk, chew, yawn, and move your jaw.

What happens in EDS?

In EDS, the ligaments and connective tissues that help hold joints in place are often looser and stretchier than they should be.

Think of a normal joint as a door with sturdy hinges. In EDS, the hinges and screws are a bit loose, so the door doesn’t move as smoothly or stay in position as well.

How does this affect the jaw?

Because the jaw joint relies on ligaments and connective tissue for stability, people with EDS may experience:

  • Jaw clicking, popping, or grinding
  • Jaw pain
  • The jaw getting “stuck” open or closed
  • Difficulty chewing
  • Headaches or facial pain
  • Ear pain or a feeling of pressure in the ears
  • Jaw dislocations or partial dislocations (subluxations)

A simple analogy

Imagine the TMJ is like a train running along a track:

  • In most people, the track is firm and keeps the train moving smoothly.
  • In EDS, the track is a bit loose and wobbly.
  • The train (your jaw) can jump around, make noises, wear down parts of the track, or occasionally come off course.

Why is TMJ so common in EDS?

The jaw is one of the most frequently used joints in the body. Every time you:

  • Talk
  • Eat
  • Swallow
  • Yawn
  • Laugh

you’re using the TMJ. When the supporting tissues are more flexible, all that movement can put extra strain on the joint over time.

Symptoms people often don’t realise are related

Many people with EDS don’t immediately connect these symptoms to their jaw:

  • Frequent headaches or migraines
  • Neck and shoulder tension
  • Facial pain
  • Tooth wear from clenching or grinding
  • Dizziness
  • Tinnitus (ringing in the ears)

This is because problems in the TMJ can affect nearby muscles, nerves, and structures in the head and neck.

Austin talks here openly about mental health and chronic illness.

 

Living with chronic illness is hard, both on our bodies and minds. The ongoing nature of these conditions can lead to stress and anxiety, and the physical limitations these conditions bring can leave us feeling frustrated or helpless.

No matter how you’re feeling, remind yourself that you’re allowed to feel that way. You’re allowed to feel sad, angry, frustrated, whatever!! There is no “right” way to cope with chronic illness so find the things that work for you and remember that no matter what, you are never alone.

It’s important that we take time to address our mental health in the context of chronic illness; so here are my 5 tips for helping you manage your mental health.

  1. Feel the feels – being diagnosed with a chronic illness isn’t easy; it can bring about feelings of grief, loss, anger, sadness, and so many more. It’s important that you allow yourself the time and space to feel those feelings. Try not to judge your emotions, allow them to move through you and process them in whatever way feels best.
  2. Talk to someone – while therapy can be a very helpful tool, it’s not always accessible to everyone; but talking about how you feel doesn’t have to solely be reserved to a therapeutic setting. Talking with a friend, family member, or loved one can be just as beneficial in coping with chronic illness.
  3. Slowwww downnnnn – chronic illness is taxing, both on our bodies and our minds, so give yourself room to breathe. Remember that life isn’t a race, give yourself the space to do things in your own time. It’s natural to feel like you’re falling behind because of your chronic illness, but remind yourself that life isn’t a competition, wherever you’re at right now is perfectly okay.
  4. Distract yourself – while it’s important to process our emotions surrounding chronic illness sometimes it can get a bit much; distraction can be a great tool to help you get out of your head and enjoy yourself. This can be something as big as going out with friends, to something as small as watching a show or listening to music. Anything that helps you relax and shake off the chronic illness blues can be helpful.
  5. Learn – learning about what’s actually going on inside your body can be a great way to cope with having a chronic illness. Sometimes just knowing the physiology behind your condition can put your mind at ease, and help you weather the storm through intense symptom flare ups. Educating yourself on how Ehlers-Danlos Syndrome works and the physiology behind the condition can help you better understand your body.

 

Ways to help your mental health when you have a chronic illness

An important part of keeping fit and healthy is to take responsibility and care of your own mental health. There are plenty of things you can do to help make sure you keep yourself mentally healthy.

Sleep is really important for our physical and mental health. Sleep helps to regulate the chemicals in our brain that transmit information. These chemicals are important in managing our moods and emotions. If we don’t get enough sleep, we can start to feel depressed or anxious. If pain is stopping you from sleeping, make sure you mention this to your GP.

Eating well isn’t just important for our bodies, but it’s also important for our minds. Certain mineral deficiencies, such as iron and vitamin B12 deficiencies, can give us a low mood. Try to eat a balanced diet. If you find you’re a particularly stressed or anxious person, you should try limiting or cutting out caffeine as this can make you feel jittery and anxious. We all give in from time to time to a cheeky Maccas or a Krispy Kreme and that’s ok! But remember they are treats and not meals.

Drinking and smoking aren’t things which we always associate with withdrawal symptoms, but they can cause some which impact on your mental health. When you’ve had a few drinks, you can feel more depressed and anxious the next day, and it can be harder to concentrate. Excessive drinking for prolonged periods can leave you with a thiamine deficiency. Thiamine is important for our brain function and a deficiency can lead to severe memory problems, motor (coordination) problems, confusion and eye problems.  If you smoke, between cigarettes your body and brain go into withdrawal which makes you irritable and anxious.

Other drugs will often leave you in withdrawal and can often cause very low moods and anxiety. More severe effects of drugs include paranoia and delusions. There is some research that suggests drug use is related to developing mental disorders like schizophrenia.

Sunlight is a great source of vitamin D. Vitamin D is a really important vitamin for our bodies and our brains. It helps our brains to release chemicals which improve our mood, like endorphins and serotonin. Try to go out in the sun when you can, but make sure you keep your skin and eyes safe. 30 minutes to two hours a day of sunlight is ideal. During the winter, some people become depressed because they aren’t getting enough sunlight – this is known as Seasonal Affective Disorder (SAD). Some people find using a special light-therapy lamp helps to alleviate the symptoms. If you can’t get out, just throw open some windows and feel the breeze.

Stress is often unavoidable, but knowing what triggers your stress and knowing how to cope is key in maintaining good mental health. Try to manage your responsibilities and worries by making a list or a schedule of when you can resolve each issue. Often if you break down your worries and stresses and write them down, you realise that they are manageable. Try to avoid burying your head in the sand and tackle problems face on. If you find you are having trouble sleeping, or are waking up thinking about all of the things that are stressing you out, write them down and reassure yourself that you can deal with them in the morning.

Activity and exercise are essential in maintaining good mental health. Being active not only gives you a sense of achievement, but it boosts the chemicals in your brain that help put you in a good mood. Exercising can help eliminate low mood, anxiety, stress and feeling tired and lazy. It is also linked to living a longer life.

You don’t need to run a marathon or play 90 minutes of football; a short walk or some another gentle activity might do the trick. Chair yoga is another option.

Try to make time for doing the fun things you enjoy. If you like going for a walk, painting or a specific TV show, try to set aside time to enjoy yourself. If we don’t spend any time doing things we enjoy, we can become irritable and unhappy. It could be as simple as listening to music twice a day or re-reading a favourite book.

Make an effort to maintain good relationships and talk to people whenever you get the chance. Having friends is important not just for your self-esteem, but also for providing support when you’re not feeling too great. Research has found that talking to others for just ten minutes can improve memory and test scores! EDS UK has plenty of opportunities to get involved with others.

Helping others isn’t just good for the people you’re helping; it’s good for you too. Helping someone can help with your self-esteem and make you feel good about your place in the world. Feeling as though you’re part of a community is a really important part of your mental health. You could try volunteering for a local charity, or just look online for something you could do from home or once a week.

One of the most important ways to keep yourself mentally healthy is to recognise when you’re not feeling good, and to know when to ask for help. There’s no shame in asking someone for support if you’re feeling low or stressed. Everyone goes through patches where they don’t feel as good as they should. You can try speaking to your friends or family, or if you think your mental health is getting on top of you then you can speak to your GP.