02/07/2022
This is the post that I tried to share from Unity Physiotherapy & Wellbeing
The long covid & PoTS masterclass with POTS UK was a brilliant event, I couldn’t watch it all as my concentration didn’t hold out for the whole day but I managed a lot of it. Looking forward to the recordings to rewatch and catch what I missed at my pace 😊
Thought would share some of the important points from the day with you all:
Long covid is most common in females aged 35–65, in deprived areas, those with other disabilities, those working in certain sectors.
1.4 million people are affected by long covid. Around 1 in 20 school children are affected.
Approx 1/5th of long covid patients have dysautonomia
PoTS is in the middle of a spectrum with orthostatic intolerance at one end and neurogenic hypotension the other.
PoTS isn’t only the common cardiac symptoms usually thought of with the condition (tachycardia, shortness of breath, chest pain, light headedness), there is a wide variety of symptoms. Other common symptoms are brain fog, migraines, gut issues (70-90% have gut symptoms and often labelled as IBS), bladder issues, dysfunctional breathing, ankle swelling, hyper mobility is common, and insomnia.
All appropriate tests need to be done to rule out other conditions before diagnosing PoTS, includes bloods, ECG and holter monitor.
PoTS affects quality of life and this can be significantly depending on severity. In a small proportion of people PoTS causes small fibre neuropathy.
Management of PoTS was covered - including increased salt, increased fluid, compression garments, diet, postural manoeuvres, avoiding triggers, and medication. Exercise was also covered, this needs careful assessment, make sure you see someone who understands this and PoTs (a form of dysautonomia) and post exceptional symptom exacerbation.
Just because someone doesn’t meet the PoTS criteria doesn’t mean they are making it up, they most likely have orthostatic intolerance and a level of autonomic dysfunction.
Blood pressure variability is important in autonomic dysfunction but you won’t accurately pick up changes with a standard BP cuff.
People commonly get POTSy symptoms after a viral illness and these commonly settle. Symptoms have to be present for 6 months and a positive NASA lean or tilt test for PoTS to be diagnosed.
There are more than 203 reported long covid symptoms - We know long covid affects multiple body systems and this is reflected in the research. I’m not going to list them here!
Lots of things are promising in terms of understanding and guiding treatments in the future, things that need further exploration include: micro clots, abnormal immune responses, viral persistence, mitochondrial dysfunction, and changes in red blood cells.
Abnormal exercise physiology is a feature in a significant number of patients. If your healthcare provider doesn’t screen for post exertional symptom exacerbation/post exertional malaise find a different one! (The latter part wasn’t said, I’ve added this bit).
There is a psychological element, although it’s not causative, as Dr Toby Hillman said yesterday all long term conditions have a psychological element and we can’t treat the physical without treating the psychological and trying to do so is like tying one hand behind the back. We can never split these in my opinion, they are inextricably interlinked! I’m going to post more on this point especially in relation to ME/CFS & long covid as the negative spin this gets in some forums concerns me especially as it turns people away from things that could help in managing the distress and symptoms.
Dr Hillman said people are commonly getting diagnosed with asthma when it’s not this, or maybe they have this too though other things need consideration. He had a great quote:
‘if it looks like a duck, walks like a duck, but sounds like a cow… it’s probably not a duck’
Long covid turns up the volume on existing symptoms and these may need treating.
Someone talked about their lived experience and some key points were: for managers to consider the anxiety it may cause when agreed changes feel threatened, eg with a change of manager; kindness costs nothing; listen and understand what’s needed; partnership between GP, consultant, occupational health and patient to identify reasonable adjustments at work; the right adjustments minimise sick leave; a sense of being believed is really important (I agree!). A quote that stuck with this person was ‘stick with me on this journey’ I can understand why. (I hope you’re sticking with this post, I know it’s long!).
Problems children have in school and support suggestions were made. Long covid for kids offers a support booklet put together by professionals and parents. Will pop the link in the comments.
Mast cell activation syndrome (MCAS) was covered, this talk was so quick and it was after lunch so I don’t take much in but an important thing for us all to remember is they are innate immune cells with receptors all over the body and they cause release of inflammatory mediators as a response to a trigger that’s not normally harmful when they get hyperactive.
Mast cells are hyperactivated by covid and may be a driver of a acute hyperinflammation.
A quick addition from me around MCAS - it needs consideration especially in ME/CFS, long covid, EDS, PoTS, fibromyalgia and persistent pain in general in my opinion.
A study was talked about that was done pre covid looking at autonomic dysfunction in fibromyalgia and ME/CFS. This was interesting! They showed autonomic changes in a tilt test and inflammatory changes, there is growing evidence that fibromyalgia is an autoimmune problem. The findings of the study with the tilt test hasn’t been published yet but the abstract is available online (if it’s of interest when I find it I can share it), though other studies around autoimmunity have.
Biological mechanisms that relate complex conditions like ME/CFS, Fibro, EDS like altered responsivity, autonomic and inflammatory factors will interplay with MCAS and long covid in some patients.
Many people with long covid and PoTS have dysfunctional breathing (I would add many with persistent pain do too).
Wow that took some typing out! I intended to do this post this morning but listened to my body which was giving fatigue signals from the amount of concentration yesterday, hope you’ve made it to the end and it was useful.
