53 - Dr Deepak Ravindran - Long Covid & Pain

Episode 53 of the Long Covid Podcast is a chat with Dr Deepak Ravindran, a pain specialist and lead of the Long Covid Service in Berkshire. We chat about what causes pain in Long Covid (& the crossovers with other conditions) as well as some strategies of how to help.

Deepak also gives some insight from his work with the Long Covid Clinic which is really fascinating and will he helpful to everyone.

The Pain-Free Mindset book

Apologies for the occasional lack in quality - the internet connection wasn't fantastic and I have tidied it up as best as I could.

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(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  0:00  
Hello and welcome to this episode of the long COVID Podcast. I am delighted to introduce my guest today, Deepak Ravindran, who is a pain specialist as well as the lead for Berkshire's long COVID service in England. So we are going to be chatting a load about pain. So welcome to the podcast.

Deepak Ravindran  0:22  
Well, thank you so much, Jackie, for having me. And for all your listeners there Good afternoon, and good evening to wherever you are. And hopefully, what we talk about is useful to a lot of you living with long COVID.

Jackie Baxter  0:39  
I hope so. Yeah. Thank you. So to start with, would you mind just introducing yourself and saying a little bit about what it is that you do? 

Deepak Ravindran  0:47  
Absolutely. So my name is Dr. Deepak Ravindran. I am a consultant in pain medicine. And in 2020, I helped set up and I'm also the clinical lead for the Berkshire long COVID integrated service. So this is one of the 90 Such clinics in England, who are looking after long COVID patients there. So I've been leading that service now, for the last 18 months or so. And we have referred or received over 1800 patients in our clinic, it's a clinic that is predominantly based in the secondary care. But over the last 12 months, we've also set up a community rehabilitation arm. So we are like the assessment and the diagnostic and investigation side of it with our rehab colleagues then supporting us in looking after the patients once we've ruled out any serious structural problems in patients with long COVID. Apart from the pain, I'm also the lead for the patient pain services. And my interest in pain goes back to about 20 years now. So I've had the opportunity to also write a book on pain management, and all the advances we know. And this was published by Vermillion last year. So it's available on Amazon as well.

Jackie Baxter  2:11  
Fantastic. And I can put a link to that in the show notes if anybody is interested. So I guess let's just dive straight into it. Pain and long COVID. Do we know what causes the pain to happen to people with long COVID?

Deepak Ravindran  2:27  
We have a fair understanding - it is something that has also happened in other conditions that are quite similar to long COVID. So variations of chronic fatigue or ME or fibromyalgia, we've understood that some of those mechanisms are broadly similar. And from there, we've realized that there could be a few explanations for why pain can occur in long COVID patients. So is the understanding at the time of the acute infection, if there's been an impact on other joints or other parts of the body, there can be a flare up of the arthritis you know people who have autoimmune conditions like rheumatoid arthritis or ulcerative colitis, they can have an actual immune flare up in their joints, causing an inflammation and that can be a reason for pain. 

But the more common reason that we end up finding is that nervous system and the immune system inflamed in the acute phase, there can be a change in the nervous systems sensitivity profile, it's sort of the threshold for when it fires off, can get changed. And that means that you have these nervous system sensitivity that sets in. And then the immune system itself in COVID after COVID doesn't go back to normal in some people. I mean, we fully understand that a lot of symptoms of long COVID are probably due to immune system hyperactivity. So we know the immune system doesn't go back to normal. 

But in many people what we are happening is that the immune system especially where it is close to the area where the nerves are, so the ending of joints or where the muscles and ligaments attach themselves to the joints. You can have areas of what are called micro inflammation, there are still some areas of really low level inflammation that keeps happening at the point where the ligaments attach near the joints or the tendons of the and those tendons when they attach or close to a joint. They can stay inflamed. 

The other place where this low grade inflammation keeps continuing is within the nervous system itself, in the brain and in the spinal cord. So these areas of low grade inflammation keeps the nervous systems sensitized and keeps the immune system active. And this combination is what is thought to be responsible for a lot of the pain. And so low grade inflammation doesn't get seen on an x ray or an MRI or of the brain or of the back or of the knees or legs, but it still is definitely painful. And this is driven by sensitization of the system. And that's what we think is responsible for a lot of the chronic pain, especially in long COVID patients.

Jackie Baxter  5:33  
Right, okay. And you said about things like over sensitivity of the nervous system and inflammation. And they're kind of two things that people talk about as an underlying cause. And you think that they're actually well, they're very connected aren't they?

Deepak Ravindran  5:49  
They are. So for example, when we have breathlessness, we talk about often breathing pattern dysfunction in people with long COVID. Then we talk about dysautonomia, when it happens to heart rate control, if what supplies the heart rate or controls or modifies the heart rate control is unstable, is not exactly working efficiently. So where the heart rate control should be very bang on, and it should arrive and there is stress. And when there is no stress, it should you know whatever your normal heart rate is, because it doesn't stay within that control because the nervous system is not functioning well. You have these rapid ups and downs in your heart rate, which is the dysautonomia. 

Similarly, in breathing pattern dysfunction, what we're actually saying is that, normally, our breathing pattern should be a little bit of inspiration you breathe in, then you breathe out, and you have a regular breathing rate of 12 breaths a minute and you breathe from your abdomen. So there's a certain regular pattern. But when the nervous system control to the breathing mechanism goes off, that's when the breathing pattern dysfunction occurs. So in both of these, you do have an over sensitivity, or an inherent change in the nervous system not functioning efficiently. It's the same that happens. 

So in the autonomic nervous system is the one that controls your heart rate and breathing. So you're one part of the nervous system, which is the autonomic or the subconscious nervous system can go haywire after the COVID infection, we are now understanding that when COVID affects the nervous system, it affects the autonomic nervous system, it affects the motor nervous system, which is why people feel very weak and are not able to really move or get out. But it can also affect sensory nervous system, which is when they get a lot of the tinnitus, the pins and needles, the tingling, the throbbing or the other sensations that they feel very differently to other people. It's the same that happens. And if pain is thought of as a sensation that needs to be perceived, then you can see that this disturbance in the pain part of the nervous system can cause that same appreciation or intensity of pain to be felt and to be much more higher. 

Jackie Baxter  8:18  
That's fascinating. And we know we were chatting just before we started recording, weren't we and we were talking about pain being a symptom that quite a lot of people seem to have as a symptom of their long COVID. But not everybody. So is this something to do with the autonomic nervous system just presenting differently in different people?

Deepak Ravindran  8:37  
Absolutely, because I think how the virus affects different parts of the nervous system is still, we haven't figured out in long COVID or in people after COVID, who is having these symptoms for a very long time. And which symptoms they feel, you know, I have had a lot of patients in our clinic who don't have the cardiac problems of dysautonomia, or PoTS, they have only breathlessness. And then others who don't have breathlessness or PoTS. Fatigue is the most common symptom they have, and they have loss of smell or taste. So it's been difficult for us to really make sense of saying, who's going to be left with what symptoms. So I think that is a challenge with a condition like long COVID. 

But that doesn't in any way diminish the experience of people with those conditions. So even if pain, there are two reasons. One is of course, genuinely it's possible that many people may have one part of the nervous system that doesn't get affected so they don't experience pain to that intensity. The other thing which I have discovered, which is also the way we measure so for example, in my service we use and the way the question that we asked people when they get admitted to our service or get referred to our service by the GPS, we ask people to fill out what's called the Yorkshire rehab screen, which is a validated questionnaire for long COVID. It was developed by the team in Leeds. And we use that questionnaire and in that there is actually a question that says, Do you experience aches and pains? And so it does ask a very pointed question about pain. And it asked them to score it. It asks them whether you have headache or chest pain or aches and pains in your muscles joints. So there is three pointed questions. 

But that Yorkshire rehab screen is not utilized in every service. So for example, even in my neighboring areas of Buckinghamshire, Oxfordshire, they don't use specifically a pain questionnaire, they don't use a Yorkshire rehab screen, they use questionnaires that look at breathlessness, look at fatigue, look at cognitive changes, look at other forms of mood or anxiety or depression. And so the second reason why pain may not sometimes be then reported, may also be to the fact that if you're not measuring it, then you have no way of reporting it. Because you're not really identifying it. 

In our clinic, when we looked at the first 150 or 200 patients who came to our service, we found that actually 70% of them, were scoring six out of 10 or more in the question that said, Do you have aches or pains in your muscles or joints? And so that was almost if you think about it, six out of 10 was the score they gave, and we assumed that that was significant, you know, anything less than four, we thought, okay, maybe not. And so that when x out of 10, was something that's interfering with their life. And we looked across that data, more than 70% of our patients reported that they experienced pain. And when you added in the headache, and the chest pain, pain was almost as common as fatigue and breathlessness in terms of the symptoms. So, to me, at least, we think that it is a fairly common symptom after long COVID.

Jackie Baxter  12:06  
I mean, there's a lot of you know, I think one of the chief frustrations with a lot of people with long COVID is this idea of "your tests are normal, therefore, you're fine". And this idea that it's very difficult to measure things, if you're just taking somebody's perception of it. I mean obviously, you know, the important thing is to believe your patient, right? We all know that. Well, we should all know that. But how do you measure something that you don't have a biomarker for? Or like, you know, because my idea of a seven out of 10 pain is probably very different to somebody who's suffered pain or their life, you know, for example. So it is quite difficult to measure something like that, isn't it?

Deepak Ravindran  12:46  
Oh, absolutely. There's, you know, however, chronic pain or pain in that matter throughout the world, we've struggled even before COVID came along and long COVID came along, there has never been an objective biomarker, but then there has never been an objective biomarker for fatigue, or sleep disturbances. These are things that we are necessarily believing the patient and it is a very subjective measure. In fact, the whole of pain research, even before COVID came along, even in chronic pain, we were entirely been guided by numerical rating scale, where we've asked patients what their pain score is. 

Drug studies, every pain medicine, painkiller, as people popularly prefer to call it. Every pain medicine, when they've been subjected to trials by pharmaceutical companies before they came to the market, was very much predicated on saying, well, if somebody's pain score was x out of 10, if they took this tablet, it came down to, let's say, half X out of 10, there was 30% improvement, then that was enough for effective, so 30% improvement is all that company had to show on a subjective scale, to say that the drug made a difference because we didn't have a biomarker to work from. So in that sense, I think we aren't very far off in saying, Okay, we accept that these type of symptoms don't have a biomarker. So in the absence of a biomarker, we believe the patient and we use that as a starting point and actually say, if we did treat it, and it did bring it down by N, that is clinically effective for the patient and for the drug itself or the treatment that is being trialed in question,

Jackie Baxter  14:35  
right? Yeah, of course. Yeah. If you compare the same person, then I suppose yeah,

Deepak Ravindran  14:41  
That is all that's always been done. You know, even with any surgeries for arthritis of your knee or any back. One of the always the important measures was yes, your X ray might show a lot of arthritis, but if people don't have any pain, nobody's going to operate on them. You don't operate on just because the person has not pain, but if they do operate, their criteria for success is not necessarily again how beautiful the implant or the knee looks. It's about whether the patient has had a clinically useful reduction in the intensity of the pain they had before surgery, to three months or six months after surgery.

Jackie Baxter  15:20  
Yes, of course. So when we were talking earlier about the sort of the mechanism behind pain in long COVID, and also in other chronic health conditions? And do you think that all of the pain is caused by the same mechanism? Because you know, you've got people describing things like limb pain, back pain, this coat hanger pain across the back of their neck, migraines, headaches, all sorts of things, do you think it's all kind of the same cause?

Deepak Ravindran  15:51  
So I have adopted and my team has adopted a more pragmatic approach to this. So if people have had existing pain, so they may have already had an arthritis in the knee. So let's take someone who is in their mid 40s, who's already had back pain or knee pain before they ever had COVID. When they do get referred to the clinic, and they say pain is a very big problem, or they say, they are experiencing a lot of, let's say, back pain, we are going to be taking the history and a very relevant point is yes, they may score eight out of 10 on the Screening Questionnaire, when they get referred to our long COVID clinic. And we would ask them Do you have any pain in your back before they ever had COVID? And have they ever had any treatment for it. And you know, in some patients, they have had treatment, they've had scans. So actually, we may have a benchmark of what the back was looking like when they're before they had COVID. And we may have noticed some age related arthritic changes, we may notice some bit of disc bulge, so there would be other things and we would have a baseline trend. 

And if they are now reporting a severe flare up of their back pain, or the back pain feeling much worse, then a lot of it is on the history and not that a fall or any other physical injury to make a change, then we would assume that this is going to be because of that exact mechanism I told you that there may be low grade inflammation happening, where the muscles of the back anchor on to the spine, at the lower back level, there might be areas of low grade inflammation over there. And that would be the working mechanism, we'd say okay, most likely this is due to low grade inflammation, and sensitization has the main reason for the back pain being worse. 

On the other hand, they may say, Well, I'm now experiencing shooting pains or sciatica. And I'm having these kinds of particular things that happened, or I fell or I twisted, then in that case, we would organize a scan or further investigation and actually see what has changed and compare it to the one from before. And that is then would lead us to whatever would be the next step if the scan showed. And we've done this for about maybe 20-30% of our patients across the last year and a half, maybe probably even less actually. And when we did those scans, there wasn't anything active ever coming up not one scan we've had wherein it has shown that there is a bad arthritis or a swelling of the joint, or that the disc has been really reduced or compromised, or there's been something else infection or inflammation happening in the muscles or ligaments that the MRI scan could pick up. That may be happening. But our existing MRI scans and most NHS hospitals aren't picking it up. 

What that gives us the reassurance at least is we've ruled out any structural issues, then this mechanism that I told you about central sensitization is going to be the predominant mechanism that is happening in for example, you you talked about knee pain or back pain, is all going to be there. Those aspects there. There is certainly headache like conditions developing after COVID. There is no doubt about it. People who have pre existing migraine, it gets much worse and there have been a new onset migraine diagnosis as well happening after COVID. So there is a possibility that there may be some changes happening in the migraine center of the brain that is causing this to happen. 

At a very biological level. It may be that the same neuro inflammation the low grade inflammation that I spoke about earlier, could happen in the migraine center in the brain, could be the main mechanism, but because it's happening in and around the migraine Center, which is located further towards the back of the head, It could be causing migraine, if that same neuro inflammation had been happening further up in the sort of main part of the head or the frontal part of the brain, it might have resulted in a different set of symptoms. But because it's happening in there, it might be causing migraine. 

So I do think that there is a proportion of people having a flare up of the structural problem in their knee or in their arm or elbow or back. Predominant people though, it is central sensitization and what now we call Nociplastic pain. So that's a variety or a type of pain that's now been introduced since 2017, or 18, to describe this point where the nervous system can itself get sensitized, but the scans or images will not show any obvious sign of damage.

Jackie Baxter  20:52  
Right that's really, really interesting. And again, you know, anecdotally, but you know, you hear a lot of people say, COVID found wherever my weakness was, and, you know, made it worse. So somebody who already had say, back pain, their back pains got lots worse, somebody who already had maybe a little bit of asthma, their breathing suddenly become much worse, you know, that sort of thing. You know, Oh I had migraines before, but not very often. And now I get them all the time. 

Deepak Ravindran  21:20  
Yeah, 

Jackie Baxter  21:20  
you were talking about low grade inflammation, you know, and that being sort of relatively undetectable. And somebody who'd got low grade arthritis or something like that, that's already inflammation, isn't it?

Deepak Ravindran  21:34  
The low grade arthritis that and that is a challenge, there is we do have at least a more structured way to interpret arthritis. So for example, radiologists will look at a knee X ray, and are able to grade what level of arthritis it is, you know, is it one, two, or three or four, depending on how much of the cartilage has reduced or whether it's bone on bone, or whether there's still a gap between it. So that at least feels like there's still a subjective report. 

So there is a very big disconnect between what is seen on an x ray or an MRI scan, and what intensity of pain somebody actually experiences, there is no correlation at all between that and that's something that was already understood in pain science, and how we are learning about the complexity of pain over the last 20 years is that there is no connection between the tissue and the intensity of pain. That you have to ask, what would you mean by low grade arthritis? Is it How less the person would complain? Or is it based on an x ray that they might have had before where somebody said you've got mild arthritis, they're two separate things all together, because someone who's got a mild arthritis on X ray may have lots of pain or may have no pain at all. Which one would you be considering as low grade arthritis?

Jackie Baxter  23:07  
And I guess this is where listening to your patient becomes so important, because what you see is not always what your patient is feeling.

Deepak Ravindran  23:15  
Absolutely, I mean, from taking outside of the context of long COVID, there are now enough studies and properly well designed studies that have been done, where they have done scans on people who have had no pain whatsoever. They've done MRI scans of their hips, or their knees or their shoulders. For people who have had no pain, and up to 50 percent have got tears in their hip in their cartilage, about 30 to 40 percent have got tears in their knee cartilage, about 60% have got disc bulges or arthritic changes in the joints in the back or in the neck. And they don't have any pain at all. So we are realizing very much that depending just on the image is never enough. You have to listen to the person, their side of this and accordingly manage the person rather than the X ray or the scan. 

Jackie Baxter  24:14  
Do you see children and your lung COVID service as well? Because, you know, we know that long COVID doesn't just affect adults. And again, this is anecdotal, but from what I've seen, pain seems to be very common in children with long COVID.

Deepak Ravindran  24:28  
True, definitely we are. So I do see children as well. But what we've done is we've got our hub and our clinic is still all the children as well. When the referral comes through, we discuss it with our pediatric colleagues and ask them what needs to be done. And if there is any complexity, something that has been picked up, some other challenges, health conditions that are coexisting have been picked up in the child. Then actually we are a spoke site, as it were, for the hub that is Oxford. So as your listeners may be aware, and as you may be aware, what they decided was adult long COVID clinics, they decided that they would be 15 pediatric long COVID clinics. And these 15 would be strategically located across the country. And so the nearest pediatric long COVID clinic in it sort of hub, as it were, is Oxford. 

And we are the spokes in that sense that as long as there is any complexity or further investigations, we will refer to Oxford. But if the Initial investigations are all fine, we will support them with the rehabilitation with whoever we have locally. It's still luckily, or unluckily, depending on how for I mean, the reason I say that is, it's unlucky in a way for the few patients that are there. But in Berkshire, we haven't had that many children being referred to our service, it's been about 10 to 20 at the most. And all of these people, only two of them have been very significantly struggling with a lot of symptoms, including pain, and had fatigue, area structural issues as well. So they were they were all supported with whatever we could do in the community. 

But for the two or three, that was what I meant by unlucky, was because they're only two or three significantly struggling patients. We didn't have the resources to actually give them a properly tailored support, which they might have had maybe if, for example, I believe London was much more severely affected. And there are other pediatric long COVID clinics that are been seeing many more children. So they may have had psychologists and physios and other people to support them. We haven't had that kind of support. 

Jackie Baxter  26:54  
Right. Okay. Yeah, no, yeah, I see what you mean about lucky and unlucky.

Deepak Ravindran  26:58  
We were lucky that as a system, we did not have too many unwell, significantly affected children. Unlucky in the sense that for those people that we've had, we haven't given them a spread of all the resources they could possibly get.

Jackie Baxter  27:12  
So we've talked a lot about the different kinds of pain and what we think might be behind it and all of that. So what strategies or medications or both, I suppose, would you suggest for people who are having this as a symptom? I mean, obviously with the caveat that, you know, people will need to speak to their own doctors, etc, etc. 

Deepak Ravindran  27:35  
Absolutely. I mean, a very good question. And, and a lot of this learning, again, is something that I was able to bring for my long COVID patients because of our expertise and looking after pain. We're looking after people with chronic pain. We're looking after people with chronic fatigue, with ME, with Ehlers Danlos Syndrome, with fibromyalgia. So we were quite skilled and comfortable in managing these people who had pain alongside their condition. So for example, Ehlers Danlos patients have a lot of PoTS, and dysautonomia like features, chronic fatigue and ME patients had a wide variety of symptoms that are similar to long COVID. Fibromyalgia patients had a lot of symptoms that are similar. 

But it boils down the pain wise, the strategies that we realized is that it's first important to understand what is the kind of pain that they have. And that's what I mentioned to you about this whole classification of what's called Nociplastic pain. So we always understood that there would be one kind of pain which you would have when you got an injury or a fracture, or you had a surgery, because in those kinds of pains, you had site of injury, Nociceptive pain, because you had these chemicals being released, these chemicals traveled in the nerves, and they travel to the brain, the brain knew where the injury was, it will instruct the muscles around that injured side to go tight, splint that area, protect the area. And as healing took place, all of that would settle down. So that was Nociceptive. 

And we always were taught about in our medical schools as well, that you can have another kind of pain, which is very different when you have nerve damage. So if you had a stroke, or you had diabetes, chemotherapy for your cancer, and the chemotherapy damaged your nerves, so that kind of pain was the burning, stinging shooting sciatica, like pain, where your nerve was actually being pressed or damaged. So these were, we knew that these two categories were there. And for a long time for the last 50 years, we assumed that always, these are the only two kinds of pain and people can have a combination of both, a mixed pattern. 

But we were realizing that in conditions like chronic fatigue, conditions like fibromyalgia, conditions like migraine, conditions like irritable bowel, pelvic pain, and some forms of low back pain, we were never able to find anything on the structure, there was no evidence of nerve damage. But your blood results also would not show any signs of inflammation or any chemicals being released. So we had to account for something that didn't have nerve damage, didn't have chemicals also being released. And that's where the IASB, which is like the main organization for pain worldwide, decided that we would call this third category as Nociplastic or central sensitization. The suggestion was that the nervous system itself would have desensitization, a low grade inflammation that drives the pain, there is no obvious evidence of damage or chemicals. 

But then this kind of pain would need to be treated differently, because this kind of pain doesn't respond to medication. So the reason I say all of this as a kind of preamble is to say that if you had a blood proof or lab proof, or some blood tests that showed inflammation was high or some markers were high, then you can say that there is a lot of Nociceptive pain. And that's the condition in which pain medications, whether that's paracetamol or Ibuprofen or the tramadols or the morphines, or even the stronger nerve medication could make a big difference if you have nociceptive pain in the short term. 

If you had neuropathic pain, where the nervous system is injured, like a stroke, or, or a diabetes or something like that, then you can have nerve medications like things like they call gabapentin, or amitriptyline, duloxetine, they can make a good difference when you got nerve damage there. But this third category here is still something that we only recognize and accepted in the last five, six years, we don't have a drug target for it. We've also found that injections or nerve blocks also don't work well because in a nerve block. So realistically the challenge we have with the long COVID kind of pain, if we say that the pain that a lot of patients with long COVID experiences, Nociplastic pain, there's no evidence of damage, but at the same time, there is no evidence of chemicals being released. Then this Nociplastic pain may not respond very well to injections, or nerve blocks, or steroids, or the tablets that we have. We need to bring other strategies in. 

Now researchers and clinicians in the field trying to manage Nociplastic pain is to say, how can we calm the nervous and the immune system down? Because both of these are kind of feeding each other and amplifying the pain. So can we calm them down is the underlying question. And once you ask that question, if drugs may work, may not work, but what can we use to calm the system down? Because if you want to calm the immune system, nutrition, and dietary choices that you make can make a big difference. 

If you want to calm your nervous system down sleep strategies, or physical activity, or various Mind Body therapies, relaxation techniques, yoga, tai chi, Pilates, movement based techniques can make a difference. So a lot of times in the long COVID clinic, what we are now telling patients is, yes there may be a role for medications. Injections or surgeries are not required, then can we offer all our patients at least the basics of how can you improve your sleep to calm your nervous system? What kind of mind body therapies could you do? Could you do some bit of Tai Chi or mindfulness or relaxation techniques to calm it down? What kind of nutrition would you be able to have? So that has been the focus of a lot of our rehabilitation programs that we build into our clinics.

Jackie Baxter  34:06  
Right. So this third type of pain, that could explain why so many people will say, you know, I've tried, you know, insert X number of drugs, and none of them will touch whatever this pain is that I have. And that completely explains it, doesn't it? Because it's not targeting the right sort of pain.?

Deepak Ravindran  34:29  
It doesn't. We just don't have a good enough drug or we don't understand what is there. That's why there's so much interest in CBD and cannabis like things because there's some preliminary research in other countries. So or cannabis itself acts on a particular form of the system in the body. And it calms down the immune and nervous system parallelly which is why it is being thought of or used and many patients, or I've had many patients certainly coming in saying, none of these tablets work but cannabis does the job. Can I get medicinal cannabis? And I'm telling them Nope, it's not yet recognized on the NHS, so can't give it. But it to me, that's how I rationalized in my brain as to why. But as a rule we aren't finding the usual pain medications that effective, it can take the edge off. But very rarely do people come and tell me that completely knocks the pain on the head.

Jackie Baxter  35:28  
Right. Okay, so is it possible that people could have kind of more than one type of these pains?

Deepak Ravindran  35:34  
It's possible because you know, each person is unique. But if somebody has had, for example, already a pre existing arthritis, like you said, you know, people say that COVID finds the weak point of somebody's immune or nervous system. So if people have had pre existing back pain or hip pain, then as a physician, I can never be completely sure that their pain is only one kind. And I think it would be wrong of me to think when I know pain can be so complex, to actually pretend that there's only one kind. So I'm not averse to saying Do you want to try one kind of a drug? But where I think five or 10 years ago, we would have just stuck with Oh, take this drug? And let's see you in two weeks, I now make it a point. Actually, I don't think you respond very well to the tablet alone. So yep, take this tablet. But what are you doing about your sleep? What can you do to improve your nutrition? What are the relaxation techniques can you use to reduce your stress or calm your nervous system down? Because if you're having the other variety of pain, then these are the non drug techniques that might very well be useful, or in fact be more effective than the drug alone. 

So that's a conversation I think, I tend to have and we need to have with our patients because if we don't talk, then they're very well going to think all these other things may not help because realistically, Jackie, when I spoken to patients, and I've seen them one or two months later or three months later, and I asked them you know, what's helped you with your pain? Oh yeah the Naproxen did this or or the Tramadol did that. But actually, I was able to go for a walk more often. And I'd started this Pilates class with my friend, it was a more gentle class. And I went for this and I think the combination or that made a big difference. So they themselves can actually recollect and, you know, make a point that it's a combination and something else that made a bigger difference. So I do feel that there is a role for these things. And we as healthcare professionals probably need to be encouraging its use as well.

Jackie Baxter  37:40  
Absolutely, yes. Anecdotally, you've got people talking about things like tens machines, splints, cold water, you mentioned CBD oil, yoga Nidra, all of these sorts of things as being really helpful. And then I found some of them very useful for my symptoms, which don't include pain. But a lot of people have talked about them being really useful for for pain as well. And that's what they're doing, isn't it? It's targeting the autonomic nervous system?

Deepak Ravindran  38:08  
Absolutely. I mean, the immune and the autonomic and the sensory nervous system does respond to a lot of this. And this is not just airy Fairy complementary therapies, there's now scientific proof. And studies have been done to show that yoga nidra, or mindfulness, or having the right kind of nutrition dampens the inflammatory response. They have done studies, we fire differently and wired differently when you do take, you know, predominantly whole foods minimally processed kind of nutrition, when you indulge in about 10 to 20 minutes of a mindfulness based pattern. When you do some form of yoga whether it's breathing pattern, and with its breathing rests there, it is able to bring it down. And it's able to calm the system down. And I'm sure that the next few years, the research will get more on COVID patients as well. 

In fact, although so actually, I think we probably still the only long COVID service in the country to do this. We taken that support there to actually go to NHS charities, you know, the big charity organization in the UK. They're the umbrella NHS charities, we went and actually pitched for and got 50,000 pounds from them to actually say, for a lot of our long COVID patients, yes, we will offer them rehab, which might be around breathing retraining, or autonomic system changes or in fact, get all the tests. For a lot of these patients they make a difference as a charity measure from some kind of complementary therapy, as it were. And we fully said, you know, there may not be any evidence for this that is robust, but it still means that we can offer our patients some community and some support something together. 

So we gave about 10,000 pounds to an organization locally, sort of a spa retreat here to offer some hydrotherapy, which is with sort of heavy water or gravity unaided sort of water therapy, another group of patients were offered a sort of machine assisted gentle movement based therapy, 20 sessions or so. So we offered a variety and then we are now working with some community organizations to actually say, how can we address health inequalities? Can we get a more community understanding of what is long COVID? What can people do for themselves, in their ethnic minorities, in their communities? Because that might be more powerful, because access is can be difficult, it can be tough to understand what long COVID is, to know whether the symptoms they're suffering from - Is it something serious, is it not? So I think that still, that value of community that value of trying to use other non-drug techniques to calm the immune and the nervous system should not be underestimated at all.

Yeah, definitely. We're talking about treating the pain at the source? Or is it always going to be a case of relief? And I suppose that's maybe depending on the type of pain, isn't it? You know, if it's something you can treat with a drug, a pain medication, then then you're sort of, it is relief, isn't it? Whereas if it's nervous system related, you're trying to hit the source. Is that right?

Absolutely. Yeah, no. And I think that that's exactly right, I think if we can see that your blood test has shown an elevated inflammation, and you got an x ray, that also shows that there is a thing that has happened after COVID, then those kinds of things will respond to a drug, might respond to a steroid injection. And that could be a proper, targeted regime of tackling the source and reducing or even getting rid of the problem. 

But for a lot of times, when this is Nociplastic pain, I think a lot of the conversation has to be around. Okay, well let's try this. Let's try this. Let's see which one makes a difference. And, and in that sense, it's almost like looking after long COVID long term condition, you know, it is with us, for us to stay, it would get better and a lot of people, but for the 10 percent of people in whom it is 16 months, we right now don't have a good enough strategy that works for that group of people beyond 16 months. So it's a question of how do we then improve their quality of life? How can we optimize all their symptoms to the best of our ability?

Jackie Baxter  42:41  
Yeah, definitely. You know, people listening to this podcast are all over the world. Obviously, in England, there's lots of long COVID clinics, which people can hopefully get referred to and can help them. In Scotland. We don't have anything like that yet. And you know, all the way around the world, things are going to be different for people depending on where they're living. So do you have any kind of general advice for things that people can either ask for from their doctors or could implement themselves?

Deepak Ravindran  43:13  
It's a great question. Actually, I hadn't fully thought about what might be a more global answer to give there. However, what I'd say is, it's quite challenging, I realize, especially in the UK, to get hold of your primary care provider at this time, I suspect, I've got friends in the US as well, who have said that in some of their areas, they're having the same difficulty of getting their primary care physician. Obviously, different countries would be differently placed. 

We must know Long COVID is a brand new condition. In my mind, while there are similarities between fibromyalgia and chronic fatigue there, I'm quite cautious of just assuming that there isn't anything to be found. So I do think that patients still need to get properly investigated. And that might require an initial full set of bloods or imaging, according to the symptoms that they have. So I think that is very important. I think if they can get a primary care provider who can at least make sense of the symptoms and investigate them, that I think still should be the first line. And then obviously, depending on the results of the investigation that might lead them down a further rabbit hole as it were, you know, if it needs a second level investigation of your lungs or your heart, or your circulation, then that so be it. 

But what we are finding, and we were doing this in our long COVID clinic for the first three to six months, I had access to, you know, cardiologists, neurologists, respiratory physicians, MRI scan, CT scans, obviously we were not testing for micro clots like they are trying to do now but even then, we still don't have a good enough sensitive test for Micro clots within the NHS, I'm not going to pretend that it's there, and we're not doing it, it's just that we don't have it. But we were doing all these tests for the first three to six months on a lot of our patients. And I tell you, less than five to 10 people had any structural problems in their heart, or in their brain. 

The few that did have, whether they were ICU patients, or whether they were community, patients who had mild COVID, or ICU patients with severe COVID, they would have some changes on their lung, like a little bit of scarring or on the heart. But my cardiology and respiratory colleagues did not have anything different for them. If they did have a heart rate problem, they might give something for the heart rate. If they had some ongoing lung issue like a scar, they'd say, yep, we'll offer you another follow up, and might give you a couple more inhalers. There wasn't anything sinister or a next level or anything, so the reason I say all this is to a lot of people listening, our understanding is that more than 90% of long COVID patients are not coming up with anything sinister, or anything structurally damaging or worrying in their symptom presentation, which to me, is or ought to be a reassuring finding for a lot of the patients. 

Because that means ultimately, this boils down to a nervous system that have amplified up many notches. And that's a good thing because it means that can be reversed. It's not like you're having ongoing inflammation or damage, which often means it's difficult to do anything till you sort the root problem. To me, it means that more than 90% of my patients are having a reversible, potentially reversible, immune and nervous system hypersensitivity. How do you bring it down? How do you taper it down? How do you calm it down? That is still a challenge. But different people seem to be finding variations of his and that's where a lot of what we talk now around pain, it may necessarily be pain. But you would find like you've talked about the various techniques like yoga nidra, or tens, that made a difference your symptoms. 

That is what I would be encouraging a lot of your listeners to actually be courageous enough and be comfortable enough to say, You know what, I've had a good discussion with my MD. I've had these tests done. And here are the five things I need to do, I need to focus on my sleep, I need to focus on a physical activity, I need to pick up some mind body therapies that have worked for me in the past, I need to look at my nutrition and my diet. And I need to understand how to manage my stress, or what can be there, and that will over time, calm it down. Yes, there will be ups and downs in the journey because that's what we understand about the COVID and immune system. But it does mean that there is likely improvement with time, so I want to leave your listeners with that there is hope. But it's about reframing what you feel is right now your symptoms.

Jackie Baxter  48:11  
And I guess the good thing about things like tens machines and cold water and yoga nidra for example, they're not gonna do you any harm, or they? 

Deepak Ravindran  48:20  
they are all low cost. They're all easy to access. There are digital ways or less than digital ways, physical ways to access them. And more importantly, as you rightly mentioned, they are not going to cause any harm in the first place, but useful adjuncts to your system.

Jackie Baxter  48:38  
Brilliant. Awesome. Well, thank you so much for joining me today. There's been so much there that's been really, really useful. So thank you so much for your time.

Deepak Ravindran  48:49  
Thank you so much Jackie, for having me and wish you a good day.

Transcribed by https://otter.ai