Physiotherapy can be helpful for people with PoTS (postural orthostatic tachycardia syndrome), it is recommended to be with a physiotherapist that has a specialism or special interest in PoTS. Before we look at how physiotherapy can help let’s look at what PoTS is.
What is PoTS?
Postural orthostatic tachycardia syndrome (PoTS) is a form of dysautonomia (autonomic dysfunction) and is characterised by an abnormal increase in heart rate within 10 minutes of sitting from laying down or with standing, this is referred to as orthostatic intolerance. For people with PoTS upright posture (sitting or standing) is limited to varying degrees. Alongside the main diagnosis of PoTS, which we could call classic PoTS, there are different subtypes: neuropathic PoTS, hypovolaemic PoTS & hyperadrenergic PoTS.
PoTS diagnostic criteria is a sustained increased in heart rate (HR) for over 3 months of 30bpm within 10 minutes of standing in adults, or reaches 120bpm or more in this time, and in children an increase of at least 40bpm. A tilt table test is used for diagnosis and/or the active stand test or NASA lean test. It is also important that other conditions are ruled out and tests should include blood tests and an ECG. If people don’t meet the diagnostic criteria and other things have been ruled out they most likely have orthostatic intolerance (which is one end of the PoTS spectrum before it reaches a level classed as PoTS).
There are a whole range of associated symptoms including:
- Increased heart rate
- Alteration in blood pressure
- Light headedness/dizziness
- Shortness of breath
- Chest pain
- Brain fog
- Shakiness or tremulousness
- Fainting/blackouts (in a fairly low percentage of people)
- Sleep issues
- Gut & bladder issues (IBS is common)
- Visual problems
- Purple hands and feet (pooling of blood in extremities due to sitting and standing for varying amounts of time)
I would like to highlight that people are often misdiagnosed with anxiety when it’s actually PoTS, PoTS itself creates feelings associated with anxiety & increased sympathetic nervous system (SNS) activation. Living with PoTS can of course also cause anxiety, or anxiety may be pre-exisiting as well.
Many things can make symptoms worse including excess heat, a big meal or certain foods, decreased fluids or dehydration, hormones, stress, standing up too quickly, not getting enough rest, exercise (doing too much or certain types like HITT – HITT is never a place to start but may be possible with rehab), time of day (generally worse in the morning) and alcohol.
PoTS can occur as a primary problem or secondary (associated with another condition), including: fibromyalgia, ME/CFS, Elhers-Danlos syndrome (EDS), Parkinsons disease, lupus, rheumatoid arthritis, lyme disease & others. Mast cell activation syndrome (MCAS) can be present as well, it is not clear if this is a primary or secondary issue, there is also a triad of EDS, PoTS & MCAS. PoTS is also associated with long covid/post covid syndrome and is fairly common with this. In my experience PoTS rarely exists in isolation.
PoTS is something I screen for as part of an autonomic screen with all the people I work with including those with persistent pain & fibromyalgia. It’s not widely enough known about and screened for so is not always picked up and can be misdiagnosed as anxiety. Some level of autonomic dysfunction is common in all the conditions I work with.
There are many things that can cause PoTS or contribute to it, which I am not going to cover in this blog. You can find more information on PoTS here:
PoTS U.K website: https://www.potsuk.org
Information on the Long Covid Physio: https://longcovid.physio/dysautonomia-pots
How Can Physiotherapy Help With PoTS?
PoTS often needs to be managed by a multidisciplinary team (with a specialism or good experience in managing the condition). Ideally a cardiologist with an a specialism or special interest in PoTS, a specialist physiotherapist, an occupational therapist when needed, a psychologist when needed, and a dietician may be needed with dietary adjustments especially if there is MCAS. Psychological therapy can help in a number of ways, including with managing the distress of living with PoTS and some treatments, like EMDR, can help to calm down the ANS. Other specialists may need to be involved, for example a sleep specialist.
A specialist physiotherapist can help to reduce symptoms and improve function, this needs to be alongside other factors like medication (when needed), hydration, increased salt (when not contraindicated), diet, compression stockings/garments, stress management & pacing of activities. Some of the ways in which a physio can help are mentioned below.
Education & lifestyle modification: A physio can help people understand the condition and give advice on the lifestyle changes that help with management, along with supporting exploration of these. There are a variety of lifestyle factors that can help, some of the main ones are mentioned above.
A tailored exercise programme: A specialist physiotherapist can tailor an exercise programme, although this isn’t a place to start when PoTS is severe and great care is needed when there is PEM. It is crucial that PEM is screened for as it completely changes how things are done. Depending on severity of PoTS and other factors, including other conditions and exercise tolerance, recumbent exercises may be the starting point. Exercise has been shown to be helpful in the management of PoTS, any exercise programme needs to bear in mind many factors. To begin with it needs to be of a low intensity and progressed very slowly and it needs to be combined with other factors, including calming & retraining of the ANS.
Pacing: A physiotherapist can help people explore pacing of activities and different strategies that help with managing functional activities. Pacing is not a set or fixed way of doing things, there isn’t a right or wrong, it needs to be individualised and it’s something we need to hold lightly otherwise we step into over control which ramps up the threat system and impacts our flexibility in interacting with life. Pacing needs to be flexible and come from a foundation of compassionate awareness and understanding in my opinion. People understanding their baselines for activities and what rest is for them is part of pacing, for people with PoTS rest may need to be laying down.
Breathing exercises: Some people have a breathing pattern disorder alongside PoTS due to the prolonged over activation of the sympathetic nervous system, increased heart rate & shortness of breath (a breathing pattern disorder also contributes to these symptoms, it becomes a bit of a vicious cycle). A physio can assess for this and give exercises to help retrain normal breathing and calm down the ANS, if needed people can be referred onto a respiratory specialist physiotherapist.
Management of multiple conditions: People may well have other issues alongside PoTS including persistent/chronic pain, a specialist physiotherapist can tailor things bearing in mind the other conditions someone is living with as well as PoTS. People may also have ME/CFS or long covid, I have an interest in both of these conditions along with PoTS, a graded exercise programme is not recommended with ME/CFS and this would also apply to long covid when PEM is present. I have worked many years as a persistent pain specialist physio & so am well placed to help with this.
Calming & retraining the autonomic nervous system: This is important with PoTS, a physiotherapist can help people explore what helps them with nervous system regulation and retraining. This like other aspects of care needs to be individualised, there is not a set guide and instead more of a flexible framework. Part of this includes using measures like monitoring heart rate and heart rate variability (HRV), these are also helpful as part of guiding exercise progression.
Self-Compassion: This isn’t something that is part of physiotherapy as such, it is however part of my approach to whole person care. I integrate coaching and yoga into physiotherapy and use a lot of self-compassion and compassion practices with people. Self-compassion can help to regulate the nervous system and the research shows us it helps in many ways (not specific PoTS research) including with decreasing self-criticism, increasing resilience and overall wellbeing.
I am a neurological & pain specialist physiotherapist, coach & yoga teacher. Alongside working in the specialist area of persistent/chronic pain I also have a special interest in ME/CFS, long covid & PoTS, chronic stress & anxiety. I also have lived experience of PoTS, ME/CFS, persistent pain & anxiety. All of my offerings are trauma informed and I have a compassionate integrative approach to care. You can find out more about me by clicking the link below
I can work with anyone in the UK virtually and locally can offer in person appointments or a combination of remote and in person. I offer a free 15 minute call for anyone before they decide if they would like to book an appointment.