Science-based Exercise with Craig Coleby, MD
Mr. Al Ruechel: Hi everybody, I’m Al Ruechel. As we continue our discussions about dysautonomia, we’re going to be talking about exercise and the importance of that with Dr. Craig Coleby who joins us right now. Doctor thank you so much for come on by.
Dr. Craig Coleby: Thank you for inviting me.
Mr. Ruechel: Give me a little bit about your background and how you’re involved with dysautonomias.
Dr. Coleby: Okay. I trained at Texas Children’s Hospital as a pediatrician as well as an internist, so the background is quite diverse and then spent an additional time training in pediatric sports medicine specifically.
Mr. Ruechel: Oh gosh.
Dr. Coleby: And then most recently last year, I passed the board certification for autonomic disorders.
Mr. Ruechel: Okay, we’ve been talking about this that exercise can actually help people who have autonomic disorders. How is that possible and why?
Dr. Coleby: Exercise is the corner stone for recovery for patients who have autonomic disorders specifically POTS, chronic fatigue, fibromyalgia. Any of these disorders that result in inability to tolerate standing up, it’s important that they incorporate exercise. Without the exercises, it is really hard to find the cure.
Mr. Ruechel: Now, it seems a little bit cross-contuitive is the word I use, because you go, wait a minute, I can hardly walk or I cannot even get up and now you are telling me that I’ve got to exercise?
Dr. Coleby: Yeah. So, it really comes down to the pathophysiology of what we’re discussing and the dysautonomia patients have a commonality in their disorders that we can see in the POTS patients to the chronic fatigue patients and even sometimes patients with Ehlers Danlos and fibromyalgia. That commonality is a failure of circulation making it to the heart when they are standing up right. They can result as much as 40% drop in the cardiac output. That gives them the syndrome of fatigue in that cardiac output of that flow out of the heart fails to meet the metabolic needs of the body and from there comes much of the symptoms that patients talk about including the fight or flight over activation which produces norepinephrine and adrenaline that produces the tachycardia.
So, there are several interventions that are recommended by National Consensus Statement published in 2015 by the heart rhythm society and in the statement, they rated all the interventions for patients who were dealing with specifically POTS but other disorders of dysautonomias and rated their scientific relativity. A level 1A evidence would be highest possible. Exercise, there is no level 1A evidence yet for anything of the thing we do. The exercises the closest we come to is the level 2A recommendation.
Mr. Ruechel: Okay. Because that’s what people want. They want science behind this rather than just saying let’s do exercise because we think it makes you feel good.
Dr. Coleby: The biggest difference a problem with saying just go and exercise is patients often get bad advice on how to do it. I once had a patient who had been going for 10 to 15 years without a diagnosis, finally went to Mayo Clinic he was diagnosed with POTS and EDS and was told she needed to exercise and needed to do the fluid and the salt, but she found that she physically could not do it. By the time she got to me she had seen 70 physicians, tried 40 medications and she was bedbound with no ability to raise her head out of the bed and I met her in a recumbent wheelchair with no ability to stand up.
Mr. Ruechel: So how is that you teach the how to?
Dr. Coleby: So, what worked for her was proper education on how to do these, what we called nonpharmacological lifestyle changes and key to it was exercise, in this particular patient, it was severe. When they stand up, there’s that blood flow that drops down into her lower pelvis and legs and in a normal person, there’s about 700 mL of blood that drops and within milliseconds, it’s pushed back up to the heart and we feel nothing. In these patients when the blood drops and the body senses that and sends out a signal to increase the squeeze and make things three to four times tighter than normal, it gets back to the heart, sometimes it just does not occur in these patients, so they experience a dramatic loss in energy and inability to function, so patients told to go exercise and they exercise in upright position. It actually will make their conditions worse and will result in sometimes a crash for days on end.
Mr. Ruechel: Oh, days on end. So, let’s talk about some of these underlying conditions. For example, what about patients that chronic fatigue syndrome. Exercise good, bad or what?
Dr. Coleby: So, I think the current research is supporting the use of exercise as well. That’s not the general opinion, there’s some beliefs that they have an energy bank and you can’t use so much energy per day and there’s many specialists who believe that they should not exercise, but the most recent data that I’m aware of demonstrates that if you take a chronic fatigue patient who has no change in heart rate and blood pressure upon standing up versus a POTS patient who has no change in blood pressure but the heart rate gets very high upon standing up, then you take another chronic fatigue patient whose heart rate doesn’t raise but the blood pressure drops. On orthostatic testing what you will find is the same almost identical cerebral hypoperfusion that occurs in all three groups about 40%.
Mr. Ruechel: Oh gosh.
Dr. Coleby: So sometimes I think we give everyone these categories but we might be talking about similar pathophysiologies.
Mr. Ruechel: Yeah, little bit challenging.
Dr. Coleby: So, my approach has been all these years is to treat my chronic fatigue patients, no different than any my other dysautonomic patients, but the key is to give them proper instructions. So, for my patient who 70 physicians, 10 years bedbound, 40 medications nothing worked, what worked for her is really good education and we kind of met her where she was at. We figured out that because she has such massive blood pooling that we laid her on her back and then turned a recumbent bike around and put the legs up and that changed the physiology of what she was going through, so now the blood is flowing back to the heart with no need for input by the sympathetic nervous system and as she did that then her body started to recondition. The reality of this disorder is they feel terrible all the time up right so they want to lay down and as you lay down and not exercise the patients decondition. You can lose up to 30% of your body mass with bed rest or your muscle mass with bedrest with two weeks and to recover that it takes maybe up six weeks to recover that.
Mr. Ruechel: I didn’t know that was so fast, two weeks.
Dr. Coleby: Very fast.
Mr. Ruechel: Now let’s talk about the same patients that have EDS which is that joint condition. You would think that maybe they can over exert themselves because they’re able to have almost that double joint feature, can they exercise safely?
Dr. Coleby: It’s very interesting. If you look at all these disorders, chronic fatigue, fibromyalgia, POTS, you will find a very high rate of patients who meet the 2017 diagnostic criteria for hypermobility Ehlers-Danlos Syndrome, about 30 to 31% and then you expand it beyond that definition, you see even higher population that meets the hypermobility spectrum disorder and there seems to be with these patients a higher rate of pain due to joint instability. We know that from research it’s not due to arthritis what it is, is just excessive movement in the joint resulting in pain and stretch from those connective tissues. The only way to overcome pain with Ehlers-Danlos in those who have been diagnosed with fibromyalgia is to strengthen those joints because the ligaments are so loose, we have to do something to replace that and that’s muscle strengthening so key for many of these patients is in addition to recumbent exercise is to do lightweight reconditioning muscle strengthening and usually it preferred with a physical therapist who is trained because they can overdo it with the weights and repetitions. The key with all these patients is to start slow and go slow in increasing. So, for exercise what we recommend is that they start recumbent, swimming is excellent because while you are in the water, the higher strike of patient with water almost takes away the pathophysiology of POTS and it’s one of the most cardiovascular things that we do. You can also do rowing machines; we prefer one with the flywheel so there’s a natural motion there and then recumbent bike. Basically, the rule is any exercise with your legs below you is a no-go, any exercise where your legs are in front of you or above you is where you want to be.
Mr. Ruechel: I’ll just say this as a person who likes to exercise, sometimes. Is that to make sure that its doctor guided because the thing with exercises is when you start doing the exercise, it may not feel good.
Dr. Coleby: These patients feel terrible when they first start.
Mr. Ruechel: Yeah.
Dr. Coleby: Actually, if I’m deconditioned or exercise, I don’t feel like great either.
Mr. Ruechel: Me too.
Dr. Coleby: I feel sore and why am I doing this, but they feel it 10 times worse than the rest of us, but it’s really important that we accommodate their physiology while they exercise so they don’t have their crash. So, in addition to a recumbent exercise program, Levine has published out of Dallas, the Levine protocol. It’s based on some of the NASA data of how to recover someone who’s lost autonomic function while they’re in microgravity in space. It’s very effective for the POTS patients a program probably over three months and our clinic with our physical therapist, we’ve taken that and expanded it. And it’s a 9 month program, so it’s very slow, but we start them off in recumbent as they get stronger and better, over time we then start moving them upright and back down until eventually they are upright, but to help them in their physiology it’s very important that while they’re doing exercise, sometimes they wear a compression pants or tights specifically they want to cover from the knee up to above the chest that helps push the blood up and then it’s very important that they always volume expand with salt and water before. We recommend products that are like the oral rehydration salt recommended by the World Health Organization but something with salt and glucose together and rehydrate before and then afterwards. And then the second point that we want to make is that these patients should never, when they’re exercising, just immediately stop exercising. You know there’s an immediate drop in pressures and they’ll feel horrible, so it’s really important there is always a slow ramp-down as they adjust and it should always if they have been doing upper exercise, return back to recumbent exercise in that ramp-down, so there’s no sudden loss of blood flow to the brain.
Mr. Ruechel: Yeah, for exercising, you’re really supposed to do that, normal people, I mean people that don’t have any other conditions, there’s supposed to be the slow ramp down, it’s great. So, you brought this chart for us to take a look at and explain it for me if you would please.
Dr. Coleby: So, this is a slide from my lectures that summarizes the key scientific state that’s recommended for treatment in patients with dysautonomia, there are non-direct treatment sets three primary goals. At the top you see is that half of these patients have a loss of volume that is there and we want to volume expand to help get the blood flow to the heart and the main treatment for that is you can see number 1, three liters of water per day and then number 2, salt supplementation and the salt supplementation should be both in diet as well as by pills or high dose sodium electrolyte drinks. If you don’t have the volume expansion to begin with prior to exercise, it does not go as well and then the next goal is to promote vasoconstriction part of the pathophysiology is they are vasodilated and there is blood pouring in the legs that is why we see a lot of patients with purple legs but much more pale on top and so external compression is key and that’s where you wear the compression pants and tights that very much helps tolerance with the exercise as well, so we recommend that they wear them during exercise. Even if you are exercising in a pool, a lot of our patients feel great in the pool and then as soon as they out of the pool, they have an event because there’s that loss of hydrostatic pressure putting on compression pants beforehand and have them on, on the way out usually decreases those side effects quite a bit.
Mr. Ruechel: And then the last circle there?
Dr. Coleby: And then the last circle is they’re dealing with rapid heart rate and all the strategies used to lower the heart rate match what we are looking for and so a proper sleep hygiene seems to play key role. Sometimes, we recommend behavioral therapy is to learn how to develop coping mechanisms to calm down their own worries so they can lower the heart rate and the key one you can see at the bottom there is recumbent cardio exercise. It’s the foundation of everything we do that’s why place the bottom. It achieves all three of those volume expansion, vasoconstriction, and low heart rate and the way that it does that is when you exercise, it creates the stress in the body with the kidney and it’s actually going to pull in salt water on a more consistent basis and change that vasoconstriction as you are exercising, you can increase the mass of your muscles in your heart sometimes up to 10% and so over time that there’s less blood to pool if there’s more muscle present. In the low heart rate how does that play with cardiovascular exercise, well after a proper exercise recumbently with the sympathetic activation that occurs there is always a counter parasympathetic what you call rest and digest and you will see for the rest of the day after cardiovascular exercise that the heart rates are lower the whole rest of the day and they have those benefits for up to about 24 hours.
Mr. Ruechel: Oh, that’s tremendous.
Dr. Coleby: And then over time as you condition your heart conditions, your heart rate will naturally lower. So cardiovascular exercise achieves all three of our goals without drugs, but in our patients, they do need to support this process with proper fluids, proper salt, proper compression and then control resistance training according to their needs and their condition.
Mr. Ruechel: Your message to physicians out there that are watching this video right now. What would you say to them?
Dr. Coleby: Say is that these patients can be helped greatly and we consider exercise the corner stone and key to recovery and I think the research is going to support and does support the use of recumbent exercise both for POTS as well as chronic fatigues as well as Ehlers Danlos and fibromyalgia. These patients share a commonality of a problem with tolerating gravity so when you do the exercise, you need to mitigate that as much as possible and your job as a physician is to teach them how to do this. Had my patient received proper advice years before, she would have done better after years of wheelchair. After two months, we had her out of a wheelchair and three months we had pain-free and now she has a job
Mr. Ruechel: And what would you say to patients too because they are going to be watching this too?
Dr. Craig Coleby: A lot of the patients are going to the doctors looking for that miracle cure pill.
Mr. Ruechel: Right.
Dr. Coleby: And there is really no health in a pill. We use the pills and the medicines to accommodate physiology that may be difficult and enable exercise but when it comes down to getting better the only thing that I’ve ever seen that makes a dramatic difference to my patients is consistent exercise. In the very beginning, you start out maybe every other day but it’s the consistency of doing it over time and I treat medicine-like it’s a drug. Exercise is medicine.
Mr. Ruechel: Yeah. Yeah. It is. A lot cheaper too.
Dr. Coleby: A lot cheaper, but it has the ability to change the physiology of the body and actually change what’s happening in a meaningful way. As soon as you quit exercising, though you’ll decondition and go back, so many patients found that you have to do it seven days a week. Once they build up seven days a week and the dose it like a drug and by doing so, they maintain their functional.
Mr. Ruechel: Yeah. It is also a healthy lifestyle. Doctor thank you so much, we appreciate it. Doctor, thank you so much for your time. I appreciate it. Continue the good work with what you are doing.
Dr. Coleby: Okay, thank you.
Visit our Education Center for Autonomic Disorders for additional video resources for patients and providers.
Wolfgang Singer, MD
Associate Professor of Neurology
Mayo Clinic Rochester, MN