- Anxiety does not cause PoTS.
- Symptoms of PoTS and anxiety are similar and can be difficult to tell apart.
- It is important to discuss anxiety because being anxious can affect quality of life and make symptoms worse.
- It makes sense that if one aspects of our physical health is compromised, we need to optimise other aspects of our life, including our mental health, to be as well as possible, and enjoy life as much as possible.
- Anxiety is common, and it makes sense that people feel anxiety at various points of their PoTS journey:
- before diagnosis, when they don’t understand the cause of their symptoms
- because even after diagnosis symptoms can be scary
- because chronic illness creates financial, relationship and worries about the future
What is anxiety?
Anxiety occurs when our mind thinks that we are in danger of current or future harm, discomfort or loss.
Everyone experiences anxiety to varying degrees, as it is a normal process which our body uses to try to keep us safe, or to help us manage difficult situations.
For one in four of us, this system becomes a problem by reacting too much, or for too long. Although this isn’t dangerous, anxiety feels scary and we can start to avoid doing things in case it happens. As a result, anxiety can greatly affect the quality of our life.
What does anxiety have to do with PoTS?
Research has shown that PoTS is not the same as anxiety. However PoTS is sometimes confused with anxiety because:
- Anxiety is so common that, just by chance, many people with PoTS will also have anxiety.
- Some of the symptoms of anxiety are similar to the symptoms of PoTS. Palpitations, nausea, light-headedness, gut symptoms, fatigue and headaches are symptoms that can occur both in anxiety and as a result of PoTS.
- Even when we know that PoTS symptoms are not harmful, symptoms can still feel very frightening. Adding scary thoughts to the mix can increase symptoms even more.
- Worrying excessively about thing that could happen in the future can lead to low moods. It can help to recognise that these problems have not yet happened and may never happen. Deal with problems as they come up, and use your time and energy on more positive thoughts.
- Anxiety and stress cause our bodies to release a chemical in the blood stream called norepinephrine. People with PoTS seem to be very sensitive to this chemical which can cause symptoms like anxiety. In addition, the parasympathetic nervous system which calms us, may also not be functioning normally in PoTS.
If anxiety begins to affect your day-to-day life it makes sense do something about it. The good news is, while we may not have all the answers yet for treating PoTS, we do have lots of things that have been proven to help with anxiety.
Why we become anxious
The system in our body that controls anxiety has changed little since the Stone Age and developed to keep us safe by by making us alert, ready for action and keen run away from threats. It is an amazing process, however sometimes we need to let our more recently evolved forebrain, where our more complex thoughts occur, take-over. In the modern day people can benefit from choosing to stay in stressful situations, such as challenging jobs or meeting new people.
Anxiety and Panic
Panic describes occasions when anxiety becomes overwhelming and we can no longer easily tune into our sensible thinking. Panic Disorder occurs when these is a repeating pattern of misinterpreting harmless body changes as dangerous or threatening to us. A vicious cycle happens where we think inaccurate scary-thoughts about what our body is doing e.g. “I am going to die”, or “I will faint and be vulnerable’”. This ‘catastophic’ thoughts increasingly make the physical symptoms stronger, causing a state of panic. Over time most people caught in this cycle start avoiding places and situations because they do not want to experience panic. This however leaves them feeling vulnerable, and actually more likely to experience further episodes.
How to manage anxiety
If we feel anxious, we can use our body, thoughts, behaviours and emotions to reduce our symptoms as described below:
1. Our body
When we are anxious our body is observing itself closely to check we are safe; and we can use this to our advantage.
- If we slow our breathing or relax some key muscles, our body begins to assume that the need to be on high-alert has passed. Learning some soothing breathing and muscle-relaxation techniques can be great tools in themselves. We can use them to calm ourselves down so that we can work on the other techniques described here with a clearer head.
- It can help to have moments of quiet scheduled into every day to practice bringing in our calming (parasympathetic) nervous system. Things like meditation, yoga and even a silent moment with a herbal tea can fill the bill!
- Regular exercise can increase feel-good chemicals that help us manage stress. With conditions like PoTS exercise is extremely helpful but it is essential to seek guidance about the best types of exercise to avoid post-exercise fatigue and flares.
- When we are anxious we can start to notice our body more. This is called hypervilalence. We can then mistakenly assume normal body changes are dangerous to us, leading to panic. It can also be a problem if we try to ignore these sensations, because we can stop noticing genuine signs we need to slow down and look after-ourselves. Meditation (see below) can help us get better at tuning into our body more helpfully.
2. Our thoughts
- Unhelpful thoughts: When the caveman got home he/she quickly felt safe and relaxed. He didn’t have a highly developed brain capable of worrying for long about what may happen tomorrow or to criticise missed opportunities or mistakes in his day.
- Our highly developed modern brains can easily get into overdrive and generate imaginary and unhelpful thoughts. Once we notice these unhelpful patterns we can begin to change them. We can challenge our unhelpful thoughts and develop more useful using techniques like Cognitive Behavioral Therapy (CBT).
We can get better at reducing the time we spend on worry.
- Try to identify problems, prioritise, and solve them one at a time.
- Break down what is needed step by step, and seek help here you can. Just putting a list on paper can help us feel less overwhelmed and stop thoughts going round and round.
- Once we have a plan, it can help us lower our anxiety the rest of the time.
- If there is nothing we can do, we can learn it doesn’t help to dwell and let worries go. This gets easier with practise.
- Meditation helps us build the mental muscle to refocus on something else.
- Having a handy list of things to do or think about, that we find interesting or make us feel happy can help us distract more quickly and successfully.
- Letting go of things in the future and past, and realising we can handle the present moment are all skills which help us manage anxiety, and are the key skills developed in mindfulness meditation. Mindfulness is paying close attention to experiences in the present moment with acceptance. There are lots of ways to so this but common ways are focusing on our breath, and guided body scanning meditation. Guided body-scanning improves our ability to notice pain or sensations without being distressed or needing to change them, building the belief we can cope. Mindfulness meditation has been shown to reduce heart-rate and regulate blood pressure. That is a lot of evidence why it is worth giving it a go!
Lots of useful resources for all these approaches can be found online (see below). If you struggle to get started you can seek the support of a professional to help you as changing these habits and forming new ones can be hard work on your own.
3. Our behaviours
Obviously what we do and where we go can affect our anxiety.
In fact, part of the definition of clinical anxiety is avoiding things . Sometimes this is sensible, but often it makes things worse. If every time we get anxious we leave or avoid a situation, we can start to crave the lovely relief chemicals that come from escaping. Soon we can find life is more and more limited by this ‘safety-seeking’, which can begin to affect our self-confidence, self-belief, our enjoyment of life and our mood. If we stay in the situation and tolerate discomfort we can instead feel pride in ourselves and realise even extreme anxiety always passes.
Distraction is different from avoidance and can be very helpful for anxiety. The trick is to choose to focus on something more helpful or positive (rather than desperately trying to stop or avoid symptoms, which, because of the urgency, only adds fuel to the fire of the anxiety symptoms). Try gently re-focusing on music, reading or a conversation.
4. Our emotions
Other difficult emotions like low mood, anger, guilt or frustration and can prime us to be more likely to feel anxious in any given situation, so we need to get good at managing these too. Once we are anxious it can spread, so things we would normally manage well can cause us to become anxious. One of the most unhelpful things we can do is get angry or frustrated with ourselves for being anxious. We don’t deserve this unkindness, and it only makes it worse by adding more anxiety to the mix. Trying to ‘fight our way though’ anxiety also doesn’t work for the same reason. We need to become a good friend to ourselves and be patient and reassuring.
You can break the cycle
With the right tools, next time you feel the physical effects of anxiety you can use strategies to help you notice, to calm and redirect your focus this way you do not react excessively (which causes panic) and resist safety-seeking behaviours. Over time, discomfort in the same situations diminishes.
Anxiety is common and we need to talk about it more. Anxiety thrives when we are ashamed of it. Especially if our physical health problems have previously been misdiagnosed as mental health problems, it can make us reluctant to draw attention to mental health struggles we might have as well. Remember it is very common to develop mental health issues with all long-term illnesses.
To avoid affecting your recovery by leaving it untreated ask for a referral, or self-refer online, for a talking therapy. These include:
- cognitive behavioural therapy (CBT)
- acceptance and commitment therapy (ACT)
- mindfulness-based cognitive therapy (MBCT)
Once they learn these approaches many people find them useful for improving all aspects of their lives, and wish they had developed these skills earlier and that they were taught in school.
Talking therapies do not always involve sitting face to face with another person. If mobility is a problem it can be possible for sessions to take place over the telephone or online. It can be hard work making all the changes you need to manage anxiety, but it can be well worth the effort!
Summary of key skills for anxiety and panic
- use breathing and relaxation to get calm enough to make sensible thoughts and choices
- talk calmly and gently to yourself as a good friend would
- remind yourself none of these symptoms is actually dangerous & what you fear hasn’t happened yet
- remind yourself there is nothing you need to do to stay safe, and so it makes sense to gently refocus on something more pleasant.
- reassure yourself that these symptoms always pass. It sounds crazy - but try to get to a place where you welcome anxiety in! This makes sense when you know that every time you experience panic-like sensations and stay calm and stay in the situation - you begin to ‘re-wire the system’. Once you develop these key skills anxiety stops being something to fear, you will experience anxiety less often, and symptoms will be less troublesome.
Written by: Jenny Welford, Dr Morwenna Opie-Moran
Approved by: Jane Hutton, Kate Ruso
Production Date: 1/3/2018
Review date: 1/3/2021