80 - Dr Anjali Agarwal - Physio Specialising in EDS & Long Covid

Episode 80 of the Long Covid Podcast is a chat with Dr Anjali Agarwal, consultant Physiotherpist, lifestyle consultant , EDS Hypermobility-specialised Physio, Advocacy Co-Director of long covid physio & women's health specialist.

We dig deep into the relationship between EDS, Long Covid, PoTS & MCAS - it's fascinating to hear how all these things can fit together - as well as what we can do to help.

Anjali's website
Knee pain
Long Covid Physio Board

Dr Anjali Healthy Tales Podcast episode on EDS, MCAS, PoTS Trifecta

Dr Anjali Youtube video on health

Pre & post natal classes
More here

Follow Dr Anjali on Facebook   Instagram   LinkedIn   Twitter 

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello and welcome to this episode of the long COVID Podcast. I am delighted to be joined today by Dr. Anjali Agarwal, who is a consultant physiotherapist, lifestyle consultant, EDS hyper mobility specialized physio, Women's Health Specialist and advocacy co-director of long COVID physio. So a very warm welcome to the podcast.

Dr Anjali Agarwal  
Thank you, Jackie. It's wonderful to come and speak.

Jackie Baxter  
Thank you so much for coming. To start with, would you mind just saying a little more about yourself and what it is that you do? 

Dr Anjali Agarwal  
So Jackie, I'm based in India at the moment and I practice out of Hyderabad. It's a city in the south India. And I look after a lot of musculoskeletal patients and patients with pulmonary rehab, women's health, pregnancy care postpartum. And also a lot of long COVID patients which I'm treating through telehealth online and a lot of patients with EDS and hypermobility. So I was in the UK previously, but at present I'm working in India, during this past three years, a learning journey. So I'm all here to share my very good stories and moments with you.

Jackie Baxter  
Wonderful, I would love to talk a little bit about the connection, or possible connection, between EDS and long COVID. Because this is something I mean, if you were working with EDS before long COVID came along, so you will know a lot more about this from that perspective. But we've certainly been hearing quite a lot about the kind of, I don't know if crossovers is the right word between the two conditions, but certainly that there are a lot of people with EDS previously who have gone on to develop long COVID. So I'd love to hear a little bit more about this connection.

Dr Anjali Agarwal  
So Jackie, we see all over the long COVID communities, all my patients, would always talk about PoTS or MCAS, or they're having something called a joint subluxation, increasing Fibromyalgic pains and increased gastrointestinal issues. All of these are you know umbrella, Trifecta term, which we see in all my patients with EDS, pots and MCAS, with hypermobility or Marfan Syndrome, all of them come together as a trifecta together. 

So previous to the COVID, right, these terms like pots and MCAS was never new to me, or hypermobility joints, a lot of gastrointestinal issues, fibromyalgia kind of pains, these are very common issues which we see in these EDS, Marfans patients. But with Long COVID in my patient, I see Pots is dominating in them, MCAS is dominating in them. And we see that they are very hypermobile, they have, you know, the Beighton scoring or it's just not the joint hypermobility. But you know, they might have uterine prolapse, so they talk about skin being very elastic, or they talk about migraines or chronic headaches, which they try to get, you know, every month. So a lot of things are happening in long COVID. 

And perhaps these are many patients who would have never been diagnosed with EDS. Now having long COVID, they tend to now think that they have EDS now. So in a way COVID came and kind of attacked a bit of a connective tissue for a lot of them because EDS, Marfans, they have a lot to do with connective tissues, what holds you together - connecting the dots, if we look at is all getting kind of hampered or damaged by this viral illness or the load of the virus, which attacks these connective tissues. 

So I think they're running parallel with each other, the EDS symptoms and the long COVID symptom, they're just going so matching together that I feel majority of the people might have got some kind of EDS triggered because of the virus, or it could have been there with them, but they will never kind of identified or kind of diagnosed. So I feel there's a very big link between EDS and long COVID.

Jackie Baxter  
Yeah, I mean, that's very interesting that you're saying - from my own perspective, looking back to before I got COVID, I would have considered myself completely healthy. But now with the perspective, I'm able to look back and think, right, well, I didn't have PoTS, but my nervous system, it wasn't 100% regulated, you know, I'm able to look back and see those things now. Whereas I wouldn't have spotted them. 

So that's quite interesting that you're saying that a lot of the time the same thing might have happened with people with EDS for example, or MCAS, that they have looked back and been like Well, I wouldn't have really noticed it at the time. But now it's been exacerbated. And I can kind of see that from before as well to a certain degree. So it's kind of like COVID has exacerbated or unmasked something in some people?

Dr Anjali Agarwal  
Very true, Jackie. Yeah. 

Jackie Baxter  
Yeah, it's very interesting, isn't it. But you also said that it's possible that actually some of these people didn't have anything before. And it is a completely new thing that is triggered?

Dr Anjali Agarwal  
It's completely new. Yeah. So just for example, women, most of the women reporting of PotS, like among my patients, you know, many women having PoTS. And these are women, like if I say 80% of the patients, I see they're reporting PoTS. So they might have been coming to me with just a back pain few years ago. And probably they had PCOS or some kind of a hormonal issue with them. And now they're coming to me with PoTS. So it's kind  awakening for us to understand this a lot of things we might have missed in the previous appointments for these women, because they complain about back pain and they complain about migraine, a complaint about PCOS - polycystic ovary syndrome. Or metabolic syndromes, which is maybe would have triggered the viral illness more for these women. 

So I think there's some link definitely there and we don't know to what extent this virus goes and damages the connective tissues that now this started with PoTS, and they are very hypermobile now. So they said people never hypermobile. You know, Dr. Anjali, like we were coming for your sessions, and you saw us and we will never hypermobile. Well, now since COVID, I don't know what's happened to my joints, my shoulder just slips out, or my TMJ, my temporomandibular joint just kind of dislocates when I'm just you know, laughing a bit. So these episodes have become so very evident to them these days. 

And PoTS is something which is getting triggered for these women in every cycle of their periods every month. So something which we really need to look into these women, especially, I'm talking about is the PoTS, the hormones and EDS and hypermobility, which is very much connected together. A lot of my EDS hypermobile women patients, they report a POTS during the periods that report about hypermobility going really all over the joints very much during the period cycles. So there's some link which now we understand that a lot of women are getting affected, there could be some link with EDS coming up for these women. So we need to really dig deeper for these women now.

Jackie Baxter  
That's really interesting, because again, it's very widely reported anecdotally on support groups, for example, the hormonal fluctuation that women get, can be really, really exacerbating for all sorts of symptoms. So you're saying that this is the same for EDS, as well as PoTS and MCAS and all the other kind of catalogue of symptoms?

Dr Anjali Agarwal  
Yeah, so MCAS is something again, another umbrella term, I would say, it has everything in it, the Mast Cell activation for women during the hormone cycle going haywire, or when the weather is haywire or when you've eaten something which is abnormal, right? So lots of patients of mine who are very young, like these are just young teens, young 14, 15, they're reacting to all kinds of food. And their parents would say they were never reactive to anything. I don't know what has happened to my child. She's reacting to sound, she's reacting to lights, she's reacting to food. She's reacting to people talking to her. So there's some hypersensitivity, which is kind of building up. Because of MCAS, particularly I feel, in a lot of people. 

And a lot of these things can be triggered when connective tissues are not behaving well. What is mcas does - mcas does a lot of damage to the connective tissues. And whenever there is flares of up and down and up and down, we see this connective tissues just getting imbalanced, and that's when we see the hypermobility is going haywire, and then it's when we see PoTS getting triggered. So I think the major you know, the culprit is the MCAS causing more hypermobility, causing your PoTS, in many of my patients. 

So I always tell them that you need to modify your lifestyle in a way you know, where is your trigger? You know, like, if you've had a very big day with a lot of people around your house and you know they have gotten a lot of perfumes in their you know clothes, so they put a lot of chemicals and perfumes and dyes. So these young children, they react to the people around them, particularly because they're sensitive to the smell or the particular dye the person has on the head, or a particular clothing person has worn. So MCAS can be very sensitive to a lot of things. And if they brought some flowers for them, they brought some, you know, food for them, they need to be so very conscious of what they're eating, what has we cooked for them, and how it has been cooked also so important, what kind of oil has gone into cooking? So many things a person can get, you know, sensitive to. 

So and these are small children, right? They're just 12, 13, 14 - Young old teens, who react to every little thing which is happening. I'm not just talking about the adults, these are the young children. And I feel the MCAS is the main dominator of what's happening, I feel. And if we try to kind of control the mast cells in a much better and organized way, a lot of symptoms of long COVID can also be controlled, which involves PoTS, of which we have a bad day, we have good day. But the good day is also dependent on what we ate in a day. What we did in a day, and a bad days are obviously triggered by what we ate wrong in a day, it could be anything which we react to. 

So many people we know the histamine rich foods are triggering mast cells. But there are certain people who are reacting to every kind of food, it doesn't matter, just histamine. So it could be the environment in which we are, or the kind of pollutants we are around with, or the food products which were eating is processed or has too much chemicals in it, or food dyes in it. So we have to look at every bit of these little things in our food and our diet. And then it really helps a person to find out whether the trigger is being kind of controlled or not controlled

Jackie Baxter  
of course. And if you can kind of control the triggers, then it'll allow everything else to kind of settle down? Because if you're constantly getting triggered, it's going to be firing off everything else, isn't it because it's all connected? 

Dr Anjali Agarwal  
Yeah. Yeah. 

Jackie Baxter  
So yeah, I've covered things like PoTS and MCAS quite a lot on the podcast, but EDS is not something that I've really looked into at all yet. So I would love just to hear about what EDS kind of is - and how somebody might think they might have it? You know, what sort of symptoms would they be looking out for? To think that it might be something to look into for them.

Dr Anjali Agarwal  
So EDS is mostly a connective tissue disorder, it's inherited by autosomal recessive or autosomal, dominant genetic conditions, in either the parents having it or it's been passed on from generation to generation, or it could have been just been a mutation, which happened when the child was born. So many of these EDS conditions can be classified into various grades. So they can be kind of Scoletic EDS or myopathic EDS. They could be the H EDS - the hypermobile EDS, or they can be a lot of EDS - kind of vascular EDS. These are the various forms of EDS. 

And how does a person identify - there'll be a lot of symptoms in EDS, probably they talk about pain being the major thing dominating their lives, so they have too painful joints, or they keep dislocating their joints - many person can dislocate it seven times, eight times, 10 times. So my patients kneecap can buckle up or dislocate 10 times in a day. So they're trying to get up from the bed and the kneecap just dislocates. Or they're trying to put something on the table with the glass in their hand and the shoulder dislocates, so the scapula kind of comes off. 

These are the extreme forms of EDS, and many of them they will have a crooked spine, which we call a scoliosis or curvature in the spine. And they start showing these symptoms when they are 12 13 14. When the children reach puberty, that's the maximum age they can be diagnosed if they're having a curve in their spine. This is also because they have so hypermobile ligaments in between the vertebraes that the joints just kind of move to one level. 

Then many of the young women, when they you know having their periods, so every period cycle they dislocate their hips, so they always will say I'm dislocate my ribcage, I've dislocated my hip, very painful during the period cycle. We have to tell them how to brace it, how to keep yourself in a good position to control that. Too much movement of the joint tissue and many of them report multiple symptoms in a day. They could be not able to digest food. They're not able to evacuate the food, or they're constipated. Many of them will have uterine prolapse, sometime they feel that had the bowel and the bladder, they are either leaking on coughing or just leaking without any cough. Leaking bowel - they'll have bowel incontinence or bowel constipation they can have. Then they have mast cells, then they have too much of rheumatism, also a lot of fibromyalgia kind of pains, migraines, then they can have, you know, sleep apnea - when they sleep, they kind of snore that causes their oxygens to kind of not get into the body. And many of them also report about a lot of pain and breathlessness on walking or doing any task. 

So we have so many and we have lots of, you know, young dancers and all - they have EDS, because they're very good at dancing and they can kind of, you know, move around at any joint angle. And they're very, very flexible. So suppose I move a thumb like that, right. But that is just classified as Beighton scoring, we do a scoring for these patients called Beighton scoring, these are just done for the joints, but now the new theories have said It's just not the joint hypermobility, which we have to look at in EDS, they can be structural hypermobility in between your uterus or in between your stomach muscles, they can be your hyper mobile tissue, right? 

The blood vessels are so hyper mobile, so elastic, they expand very easily. So many of these patients have PoTS, because they have very hyper mobile blood vessels. And those cannot relapse and contract to push the blood against gravity. Okay, so when they stand up their muscles and the ligaments, they get loose, and this tissues and they can't pump the blood up to the heart against the gravity. So maximum why hypermobile tissues are having PoTS is one of these reasons. It's more, you know, physiological, physiological physics oriented, you know, problems for them. 

So, over and all they have an issue with sufferers, every aspect of their life, you know, many of them would have dislocated eye lenses or E glucomore, cataract, or they'll have very crowded tooth, and their gums just kind of keeps moving with the tooth, you know, it's so supple inside the mouth. So they have to have frequent dentist visits and all. 

And the major problem women talk about, or men and children talk about, is CCI, cranial sacral instability in the neck area. So the C1, C2 vertebrae, the Axis and the fluxea is so very hyper mobile, the ligaments just kind of supple out, move around. And they kind of dislocate the C1 C2 vertebrae in the neck. And they also similar symptoms of, you know, what we're seeing in long COVID, many of the patients are seeing and kind of cranial sacral instability, also almost mimicking the same thing. So we have to be very, very careful with these patients, when we treat them, when we look at them and hear them out.

Jackie Baxter  
Yeah, just listening to you there, you know, talking about things like the blood vessels, which is making the PoTS happen. And then again, we're seeing this crossover between the two conditions, aren't we? And I think we all know that there's a lot of crossover between all of these things. But you know, you can kind of look at that and be like, well, that is like, the actual physical reason for that. So it sort of ties it all together, doesn't it? 

Dr Anjali Agarwal  
Yeah. 

Jackie Baxter  
So you have been working with EDS patients from before. And now you're starting to see, in fact, you have been seeing, a lot of people with long COVID coming to see you as well. And what do we do? I mean, what sort of approaches do you take with these patients, to try and help them? 

Dr Anjali Agarwal  
The major aspects for any patients with EDS is their lifestyle, structural, you know, you need to look at their structure, look at their lifestyle, look at their circadian rhythm, and also look at their connecting the dots  - connective tissues. So if you look at how we take care of the connective tissue, one, same thing will apply for the long COVID too - how to take care of your connective tissue. Second is how your lifestyle is. So basically, what you're eating in a day, what you're doing in a day, how you're managing your day. And what happens if there are triggers. How do you manage those triggers? So how you divide the lifestyle into taking care of yourself. Any trigger happens, how you take care of those triggers, and what you do in a day while eating food, while sleeping, while taking care of normal activities throughout the day, whether it's work, whether it's school, or whether it's doing activities of daily living in the house, and also looking at circadian rhythm. 

So ETS is very much controlled by what time you're getting up, what time you're sleeping, how much time you're sleeping, what time you're eating food, because all the circadian rhythm controls your mast cells. And the mast cells will behave well, when the sun is on, or when it's very cold, when it's snowing, or you know, how the circadian rhythm of a human body is, or the biological clock, we have to look at that. 

You know, so if we can look at, control the circadian rhythm, follow a certain pattern or routine, we have won the battle against triggers, or, you know, that crash moments when we get crashed, or today I didn't get good sleep, you know, my mast cells are really havocked. And that's when you know, you see your patients having the kind of a crash - I didn't get sleep, why didn't you didn't get sleep - because you ate some food which was high histamine load, or you did some activity, which causes your histamine to really go up. So too much exercise will cause histamine release, that again will cause us to become too hyper alert in the night, or adrenaline drive in the night and we don't get sleep. 

So the whole goal which I run around my patients is get your good sleep, whatever said and done, remove the triggers in your house, remove the triggers in your food, remove the triggers around your people - there are people who can excite you, there are people who can talk to you in a certain manner, which can cause you to go into emotional stress, which can again cause your mast cells to not be in bed, right. So you really need to know how to balance your mood, balance your food. So as I said, Father of your problem is Mast cells. 

So again, another thing which we look in EDS is also structural. So if you keep your joints structures well and proper, if you keep your postures well - your neck is proper, your spine is proper, that is your fulcrum of the body. Fulcrum means that's your base point where all your new structures are attached to, that's your whole spine, starting from your cervical spine to your coccyx, and your all your appendages, which are your proximal approximities. And all they're attached to the spine, right. So if your spine is good, if your neck is good and aligned, your structures of the joints all over the bodies, also well controlled. 

Now what happens if my joints is destabilizing? Most EDS patients will feel their shoulders to be destabilizing, right? When it doesn't stabilize, they feel very anxious, right? It's about to slip, it's about slip. So they have that emotional memory of the trauma that this would happen again to them. So they kind of tense their muscles, right, they go into that mode of flight and fight mode, which is the sympathetic overdrive. 

So we always tend to tell our patients is Don't let your mind wander off to that zone of sympathetic drive where you want to control the movement, just sit in peace and try to feel that the joint will just kind of get balanced on its own. Once they do that, they don't push themselves to a sympathetic drive, which can again trigger their PoTS, which can again trigger their MCAS. And then we have the vicious cycle of going up and down with the hypermobility tissue just misbehaving. Right. So it's all connected together. So that's why it's used the word connect the dots, so connect everything together.

Jackie Baxter  
That's fascinating, again, how the muscle and the connective tissue actually responds to the sympathetic overdrive or the you know, the sympathetic mode. So actually, by trying to control the sympathetic overdrive, and to stop yourself getting into that kind of state of sympathetic panic, actually that can also help to control the muscles and the connective tissue and, and hopefully stop that from all getting exacerbated.

Dr Anjali Agarwal  
Yeah. And it's a pattern, right? It's a pattern. So it's like, if I've had one relapse of an episode of my joints destabilizing, my second episode is not very far away, because my body is again, very easy on sympathetic drive. And then again, again, I could set my joints to pop out. So we have to be conscious that - only the first time you have it, control it in a nice way. You know how to kind of control it, and it works better for the next times. 

So a lot of my patients, I think they are super strong people, I think they're mastered this art, and they know it all. And I feel wonderful to say that news - they can do it on their own. And, you know, like, it's super, super challenging. These episodes are super challenging. But the moment you tell them the tips and the tricks to do it, manage it. Because somebody was taking a flight from California to India. And she just popped her TMJ joint in the flight, she yawned and she popped it. But I have given her tips how to manage it inside the flight. And she did it well, before she could land in India. So I think these are little tips and tricks. If they can manage it, they can, you know, be more involved in daily activities in a much safer and smoother way.

Jackie Baxter  
Yeah, that's amazing. That's kind of blown my mind a little bit that that's all kind of connected like that. So yeah, would you be able to talk through some of these - you said tips and tricks for managing these kind of moments?

Dr Anjali Agarwal  
So the simple tip is to have a very stable spine, have a very good lot of strong core muscles, have a good night's sleep to keep your core strong, have a well balanced diet, which involves no trigger food, which is tailor-made specific to individual, because some kind of foods are good for you, some food may not be good for you. Because I know there's a big list of histamine food, which we say, but some food definitely works best for some people, some may not work. And plan your day out like plan, pace. And we have been talking about it lot - the three P's right, planning and pacing and trying to kind of prioritizing your jobs. 

So obviously, we know that connective tissue becomes too elastic the more movements we do in a day, right? The more movements you do means more blood flow happening, more expansion of the tissues and everything happening. again then that will cause us to go into that phenomena of going down and going up and having a crash, getting recovered and having a crash. So to avoid these kinds of fluctuation of up and down hell after health - eat at proper timing. That's very, very important. Try to distract yourself or do a digital detox post 6-7pm In the evening. 

What happens in the EDS cases is the mast cells are triggered by all the gadgets from the EMF around us, we have too much of electromagnetic fields. That also plays a role with mast cells getting very active, very triggered for these people. The more you are with the blue light in the nighttime, your circadian rhythm is upset, your melatonin hormone is upset and then you go into a sympathetic drive. So the best tip is detox after 7pm with all the digital gadgets, TV, mobile phones, any kind of Bluetooth gadgets, which we have around us. 

Second thing important is to get some nature friendly movements in the body, around the house. So get some plantations which are happier for your mast cells. So a lot of plants, a lot of greenery around you helps to beat that mast cells getting very very hypersensitive also for many people because it cuts down this harmful effect of EMF radiation still. 

Third important thing is to include good food which can help you have a very good tensile strength. We are having evidences that some people do good with collagen rich foods, but it's not that we can manufacture collagen in our gut. You know  it's nothing like the EDS people can you break down the food and get the collagen out of it, but certain foods which are very good for your bones, for your connective tissues, one should eat those. 

And forth and finally is look at your ergonomics of your space - where you're sitting, how you're lifting your school bag, how's your school desk, you know designed? If you're working, how's your computer table or chair designed. If you're somebody like a hospital worker, you need to have your compression stockings, compression garments, have a chair, have a sit down, have a sip of water get real electrolytes. Because mast cells love water - they love hydration. 

When does a person have EDS dislocations are - when they're dehydrated more, then they kind of lose on water more right? And then we say PoTS - have water, have water. Everything is so linked up together because dehydration, connective tissue, they work together. They're like enemies of each other. So we have to make sure that we are hydrating well, we keeping the connective tissues nice and supple, we are keeping our postures nice so that our center of gravity is well good defined. So these principles only I think a lot of patients I have worked on and they are really doing good. They're really doing well.

Jackie Baxter  
Yeah, like you say it ties it all together again, doesn't it - with the hydration and the water? It's one of those things we're told as a child, isn't it, you know, Oh you need to drink plenty. And it's not just one of those things, like we're told it because it really is important. And certainly before I got COVID, you know, I was very busy. I was always on the go. And, you know, I didn't drink enough, because I didn't have time to drink enough. And if I drank enough, I certainly didn't have time to go to the bathroom. So it's something that, you know, we've all kind of had to readjust. And, you know, plenty of hydration is something that I'm sort of like constantly trying to do now. So, yeah, that's really, really interesting, isn't it? 

So there's loads of really, really helpful stuff there. The things that you were just talking about there are kind of longer term things, aren't they? They're things that you kind of have to work on. And they're very, very important to do that. But what about in the kind of "right now" moment, you know, if I feel my sympathetic overdrive starting to kind of ramp up? And I think, oh, no, what's this going to cause? Is this going to cause my joints? Is this going to cause a flare up of my MCAS? Is this going to cause my PoTS to go haywire? Is there anything that I can kind of do in the short term to kind of, hopefully stop that from turning into a full blown crash or a you know, thing?

Dr Anjali Agarwal  
So one tip I give to all my patients, wherever you are, suppose you're in the flight, you're in the shopping mall, and this episode is supposed coming for you. So got to grab a chair, if you can grab a chair, if not, grab a chair - lie down. Okay, just find a place and just lie down. And you got to start breathing inside the belly, the deep breathing into the belly is supposed to be a very good sympathetic drive calming down exercise for many of my patients. 

So all I tell them is to center their thoughts around their belly button. And they're able to focus on all that the joint, suppose the shoulders popping out, just feel that the shoulder joint is coming towards the center of gravity of your body. Okay, so you imagine that you have a shoulder which is about to pop out, and you're about to get the shoulder joint into the center of the belly. Got it? So when they start to breathe, deeply, abdominal breathing, and they kind of focus on the particular joints. So particular kneecap, particular knee joint, the kind of keep breathing, breathing, feeling that the joint is just kind of sinking into back into space. The moment they do that, the joints automatically can relax on their own, and they feel very calm, okay. 

Any kind of, you know, fear, any kind of trigger can trigger the whole event for them. So the fear of dislocation is the biggest fear, the fear that they might end up dislocating it and they might need to go to the hospital. That is the biggest fear for them. So the moment thing is not worry about dislocation. Just kind of become calmer by kind of putting it back in place on its own. You can do it - what I tell to people is, EDS people are lucky - if they dislocate, they know how to relocate it back. Okay, so they can do it on their own also. So many of my patients who don't have EDS, if they dislocate, they need to be in the a&e, they have to be in the casualty to get it fixed up, right. But with EDS, it keeps happening so many times, they know how to get it backwards also. So if it just pops out, they know how to get back also - so that's one of the things. 

And the centered breathing, which I called, or the abdominal breathing, is the wonderful technique to do wherever you are in the world, in whatever circumstances you are. And this helps to not let the sympathetic drive kick off at all. You know, it's like the thing - and grab water bottle, wherever you can grab a bottle bottle. Generally you will have a water bottle with you - get the electrolyte pumping in your body, because the moment the connective tissue starts getting water, starts getting that electrolyte, they start to pump up and they start to do well. They start to do the best job they can. 

And obviously when there's PoTS, triggering the sympathetic driver trigger for you. So more water, electrolytes added up, getting your heart to do less of the work and your sympathetic drivers calmer, your joints are in place, you've already solved the episode for yourself. 

And always start your day with little bit of good proteins. So it's always good to, you know, add in foods which will help you feel fuller, not too fuller in a day, but little amount of food also, you can take along with you wherever you're going, so that you're not going hungry, and you're not having a crash of hyperglycemia. So they also go into hypoglycemic mode, sometimes their sugars can go down very much. I always tell them never go hungry, you need to be eating food, carry a small tiffin box wherever you are going with a little amount of food with you, and never go hungry, because you might not get the food which you want to eat, because it can trigger mast cells. So carry own tiffin boxes, don't shy away from taking that tiffin box of yours. 

And a good stable shoe. So you need to wear a good footwear, which will give you more stability while you walk. So avoid high heels because that can be totally against PoTS and all, will cause more dislocations if your center of gravity is out of place, especially for the women folks. And try to wear shoes which have a broader base of support, it helps you a lot to walk longer, better and stand for longer time too, without crashing out.

Jackie Baxter  
Yeah, of course. So all these sort of modifications that we can make to get our body into the best possible position to kind of hopefully not get triggered. But if it does, to be able to handle whatever that is, I guess?

Dr Anjali Agarwal  
Yeah, obviously, avoid postures, which involves too much of hyperextension. Sometimes people tend to go with your chest completely backward, and the tummy is protruding forward. And this is clearly good for all the long COVIDs also - avoid anything which it was hyperextension, when your neck is going beyond your tummy, backward, okay, and either try to get your neck to forward the tummy. 

So these two extreme poses, or postures are extremely dangerous, I would say, because if your neck instability comes more, so always try to feel that your neck is standing on top of your spine. So that's called as a neutral posture. And it helps the ligaments of your neck to be more stable. And it also helps you for not going into that sympathetic drive too.

Jackie Baxter  
I mean, I think certainly something that I have struggled with, with long COVID is - rather than using Exercise and Movement as a way to help things, actually, it's been more about not doing things, than doing things. And that is not something that comes naturally to me. And I think it's the same with a lot of other people. 

So for me, it's been trying to get this balance of getting some movement, but without it being too much to trigger other things. And I think this is a very alien kind of concept to a lot of people because we've been told since childhood, that exercise is good. And it's this kind of different, you know, opposite, almost to that. So finding that balance is really hard, isn't it, when you've got long COVID?

Dr Anjali Agarwal  
I think everybody has to have their own bar, which they put for themselves. So this is my zone, this is the zone for Jackie. And that's how our base, which is all going to come together, you know, like that's how it has to be. So it should never be that I overdo something which will cause to histamine release, because exercises causess histamine to release too much. And that's the mast cell being triggered, then it's triggering your exertional malaise syndromes, and then it's causing your connective tissue to go really, really sorry. Right? So it's all linked up together. 

And if the goal is to keep it very simple, and keep it very methodically and very organized, I know it's not easy for everyone to be very organized every day. But I think we can be more routine with whatever we are doing. And we can fall in place with everything which happened. 

So I think the goal of exercise is we have to be knowing what's a safe zone and we should know the bar at which we should draw a line and not proceed further than that zone, where we might end up being too tired or having a relapse of the whole post exertional malaise. That's very, very, you know, important that we do the right stuff, the right movement with the right posture. So safe exercises are where we don't cause a histamine to, you know, bombard our bodies, and our mast cells go very unhappy. 

So we need to know, our structure is very important, which is a spine as postures, our neck is very important - the neck and the alignment with the spine is the best way we can justify how are they going to be. So if something has popped out from my spine, my neck has gone off, my spine has gone off, definitely my other joints will also start to dislocate. Right. And as a result of that, if I've done wrong exercises with that kind of a spine, I'll have a crash. So it's all so interlinked in cases of EDS, that your connective tissues, your spine, your posture plays together, they're all together, working together for your bodies. So we have to maintain a good posture, maintain a good neck health. And remember not to overdo things that we are causing our tissues to so become that we keep dislocating all our joints. You know, that's again, the reason of PoTS getting triggered, that's again, the reason of, you know MCAS having a gala time trying to, you know, make us feel like you've had a crash because of too much histamine. Because of wrong exercise. 

So, I think simple exercise, plan your day, and make your life simpler. That's the key word, I would say, when we have all these things going on, don't bombard yourself with complicated stuff. I need to do running, I need to do jogging, you know, like people are being told, okay, you know, for me to get better with long COVID you need to kind of, you know, jump back in action, start running. But all these things will bring a person down hill, you know, these histamine triggers, the PoTS triggers for these kind of activities. I think, take it slow, take it steady. And I think, never lose hope there's lot of hope. And people are recovering.

Jackie Baxter  
Yeah, definitely. So to not do too much, which is something that I struggle with. And I know that other people do as well. So it's to do the movement that is right for you, not what someone else is trying to tell you to do?

Dr Anjali Agarwal  
Correct. Be your own educator for your own condition. I think being more responsible for your own health is so important.

Jackie Baxter  
Yeah, definitely. It's great to hear that you're seeing improvement in your patients. I think hearing positive stories and hearing that there are people that are improving, that are getting better is all important. So that's really good to hear.

Dr Anjali Agarwal  
Yeah, a lot of my patients are almost back to being normal now. They're being able to get back to office or going back to work four days a week and trying to you know, get back to their being able to start to walk, because they were totally debilitated on the bed. But now they're starting to walk. So it's a great recovery for all of them.

Jackie Baxter  
Yeah. Oh, that's wonderful. So yeah, thank you so much for joining me today. It's been so interesting hearing about everything that you're doing, and to take a bit of a deeper dive into the EDS side of it. So thank you so much. And yeah, thanks for all that you're doing.

Dr Anjali Agarwal  
Thank you Jackie. Lovely being with you. Thank you

Transcribed by https://otter.ai