Reprinted with the kind permission of Cort Johnson and Health Rising
My expectations were not high heading into viewing “Exercise Therapy as a Dysautonomia Management Tool.” How much really could there be to exercise? You can either do more or less of it, you can do it lying down or standing, you could do more aerobic or less aerobic exercise, and that seemed to be it. Boy, was I wrong.
Miranda does not view physical therapists (PTs) as some kind of add-on field. She views PTs more as primary care providers that are able to bridge gaps that other health professionals are not.
She knows dysautonomia intimately. Not only has dysautonomia, mast cell activation syndrome (MCAS) and non-hypermobile Ehlers Danlos Syndrome (EDS) affected three generations of her family, but her two daughters have it.
They have been through the wringer trying to figure out what’s going on and how to help. Even with her PT mother helping, one of her daughters struggled again and again to find the right exercise protocol. The good news is that they’ve been quite successful (see end of the blog).
That search to help her daughters drove Dr. Miranda from several decades of clinical practice into academia in an attempt to have more of an impact. She’s now an associate professor at South College in Centennial, Colorado. She wants to spread the word that the right kind of PT can help.
First, she talked about a 2020 exercise/physical therapy poll that she and Lauren Stiles, the founder of Dysautonomia International, did which garnered almost 1,000 responses in the dysautonomia community.
Exercise, of course, does do a lot of good for almost everybody without a condition like ME/CFS or POTS. It reduces the fight/flight (sympathetic nervous system) response, increases the amount of blood the heart pumps, prevents deconditioning, and improves functioning. (It also has an analgesic (pain-reducing effect), improves cognition, and just makes one feel good.
Exercise is difficult for people with orthostatic intolerance conditions like POTS, in part, because most people stand up during exercise. Metabolic and immune problems found in these diseases can then make things worse. Like ME/CFS, then, deconditioning is a pretty natural outcome of having a condition like postural orthostatic tachycardia syndrome (POTS).
Exercise, though, appears to be a more effective therapy in POTS than ME/CFS. Several different exercise programs (Children’s Hospital of Philadelphia (CHOP), the Levine protocol (UT Southwestern Dallas)) have been developed for people with postural orthostatic tachycardia syndrome (POTS), and, in general, exercise is highly recommended. (The Levine Protocol is only provided to health practitioners.)
CHOP – a modified form of the Levine Protocol – is a pretty rigorous 8-month exercise protocol that uses a heart rate monitor. It starts with recumbent exercise (rowing or swimming) and stipulates that one should never take more than two days off from exercise. It includes 20–30-minute strength training exercises and body resistance exercises taken in between the aerobic exercise days. Within four months, the participant is expected to graduate to upright exercises. It states that “commitment and mental toughness are key,” tells participants not to expect results for several months, and encourages them to keep their vision of a healthy life before them at all times.
The program works for some but not for all. Miranda’s poll found that only 30% found exercise very helpful, 30% found it somewhat helpful and 40% found it not very or not helpful. She noted that exercise studies, too, have a pretty high failure rate.
Her daughter’s experience provided a good example of just how treacherous finding a suitable exercise program can be. Mast cell activation triggered by a hike through the forest at summer camp suddenly tipped her formerly healthy high school daughter into full-blown POTS. Even with the help of her physical therapist mother, Miranda said she couldn’t count how many times they failed at an exercise regimen.
The poll indicated that the best-tolerated exercises (bridging, tabletop) improved the stability of the core muscles (32%). Recumbent cycling (29%), yoga (22%), resistance exercises, and water exercises were also helpful for some. The most common symptoms that occurred after exercise will be familiar to people with ME/CFS: post-exertional malaise (55%), fatigue (79%), headache (48%), muscle pain (46%).
Miranda asserted that many of these symptoms can be helped by physical therapy (PT). PT wasn’t her daughter’s sole support; she also needed help with her mast cell activation syndrome (MCAS) and POTS to progress, but physical therapy played a major role in her getting better.
The poll found that 53% had tried PT, 25% found it very helpful, 26% found it somewhat helpful, 18% found it not really helpful, and 17% reported it was definitely not helpful.
Despite the rather low numbers, Miranda found them encouraging, as five years ago when she started looking into PT for her daughter, she came across story after story on the internet of how damaging PT had been. Physical therapists, she said, are learning.
With central fatigue, if you push the muscles too hard, the brain, if I understood this correctly, responds by producing more fatigue and ultimately more post-exertional malaise. The goal with central fatigue is to stop doing the exercise before the muscles send a message to the brain which results in more fatigue and pain. Miranda noted that it can be difficult to determine what is peripheral (muscle-produced pain) versus central (brain-produced pain) fatigue.
This is not just a POTS/ME/CFS problem. Miranda tentatively linked different disorders in this class together – MCAS, FM, CRPS, migraine, ME/CFS, POTS, EDS, hypermobility, RLS, autoimmune encephalitis, dysautonomia – all of which have some sort of inflammation in common.
Few of those polled, though, had seen the type of physical therapist Miranda has found is particularly suited for problems like POTS/ME/CFS. Only 14% had seen a therapist specializing in vestibular dysfunction or altered sensory processing. Vestibular therapy is used to support people experiencing many of the same symptoms commonly seen in dysautonomia and ME/CFS/FM such as dizziness, fatigue, nausea, headache, brain fog, sensitivity to noise, light, and being emotionally labile.
(Dizziness is a more complex symptom than one might think. If dizziness is simply a function of standing, then orthostatic intolerance is a likely culprit. If dizziness comes from moving one’s head in different directions or from visually stimulating environments or if the world seems to “bounce around,” then problems with vestibular functioning may play a role.)
Vestibular physical therapy includes exercises that involve vision stability, posture, stretching and strengthening, balance, neck mobility/stretching, and others.
What Fatigue, Pain, and Dizziness Looks Like
Bad posture is a big deal for Miranda. This, Miranda said – pointing to a picture with a girl with spectacularly bad posture – is what fatigue, pain, and dizziness look like.
Unfortunately, a lack of activity puts you at risk for bad posture which makes things worse.
Your neck muscles shorten, causing your jaw to jut forward. That can put pressure on your suboccipital nerves, causing suboccipital headaches – the kind in which the pain feels like it’s traveling up behind the eyeballs.
Tight neck muscles can also produce dizziness, blurry vision, and fatigue. Six small muscles around your eyes control your eye movements and how your eyeball sits in its socket. Tight neck muscles can impact those muscles causing problems with how your eyes track and move – resulting in dizziness, vertigo, and other symptoms. Tightened big neck muscles can also cause the internal short, tiny muscles in the back of our neck which control our posture to lose strength – throwing your posture off.
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Having your head tipped forward changes your orientation to gravity – moving your gravitational center forward. That might cause you – if you then look up – to feel like you’re tipping over backwards.
Brain fog is another unexpected possible result of poor posture. Movement is naturally automatic and easy, but when your system is out of balance, it takes much more brain activity to learn how to move around, potentially producing brain fog and exhaustion.
Because we’re naturally movement-based creatures, not moving much has its neurological impacts. Our nervous system has a kind of “use it or lose it” ethos. If part of it is not being used, it can fall into disrepair. Our inner ear – a key balance regulator – can get tired if it doesn’t get its usual inputs. Not moving our neck much because we’re lying down all the time, or have stiff necks, actually causes the brain to work extra hard to reinterpret what is going on.
When lying in bed, you’re not stimulating your natural pathways, potentially causing your sensory input system to get confused and disturbed, causing your brain to work extra hard – potentially resulting in more brain fog.
Rounded shoulders, tight chest muscles, and overstretched muscles in the back can cause shortened breath and problems breathing. In comparison to our heads – which weigh about as much as a bowling ball – our necks are like popsicle sticks. Having that big bowling ball out of center means it takes a lot of extra work to move through the day.
Help is Possible
Physical therapists have found ways to address these problems. Clinical guidelines have been developed that can help to differentiate different kinds of pain and dizziness patterns that occur.
Cervicogenic headaches, for instance, are characterized by poor posture, and trauma that produces spinal problems and/or soft tissue injury. They can cause difficulty moving the neck, problems with visual tracking, dizziness, and sensory disturbances. These symptoms can be helped by manual therapy, dry needling, EMG feedback, postural exercises, motor control training, and multisensory balance training. Similarly, tension headaches can be addressed using a variety of techniques.
A major takeaway from the lecture was that the same areas of the brain affected by traumatic brain injury (TBI) are also affected by dysautonomia. TBI injuries, Miranda said, are something that “we do really well” (she specializes in concussion injury); i.e., the same practices used in TBI can work with dysautonomia as well.
The central fatigue found in ME/CFS/POTS, dysautonomia, and others means, though, that it’s critical that PTs dose their therapy differently.
That involves slowly retraining the brain response. How to rehabilitate movement in a population which has a huge problem with exercise is clearly a challenge for the PT profession. PTs’ biggest problem is under or over-dosing exercise.
Patients need to learn how to read their bodies and anticipate where the failure point is – where their symptoms start to ramp up. That only comes through trial and error. She acknowledged that it was a tough learning curve.
Post-Concussion Syndrome, Dysautonomia and Chronic Fatigue Syndrome (ME/CFS)
Miranda has spent her career working in brain injury. Many people with concussions end up with at least transient episodes of dysautonomia. In one survey, 11% of POTS patients reported a concussion within three months of becoming ill. In fact, dizziness and mental fogginess after a concussion can be a sign that a prolonged recovery period lies ahead. Miranda and Lauren Stiles, the founder of Dysautonomia International, published on the post-concussion/POTS intersection in 2018.
The symptoms of post-concussion syndrome are similar to those found in dysautonomia, POTS or ME/CFS/FM and include “headache, dizziness, fatigue, irritability, difficulty with concentration and mental tasks, memory impairment, sleep disturbances, heightened emotional responses, and poor stress.” Indeed, one paper states that “numerous symptoms of POTS and concussion can be indistinguishable.”
One kind of post-concussion syndrome (“physiologic post-concussion disorder”) even involves exertion intolerance and post-exertional malaise. It’s diagnosed by the inability to walk for 20 minutes on a treadmill without your symptoms.
Physiologic post-concussion syndrome is believed to be caused entirely by the brain and is believed to be due to reductions in cerebral blood flow, the “prolonged effects of a metabolic energy crisis,” and autonomic dysfunction. Note that reductions in cerebral blood flows have been documented in ME/CFS, that some sort of metabolic energy problem is certainly possible, and that autonomic nervous system problems are common in ME/CFS and fibromyalgia.
The exercise and physical therapy protocol for “physiologic post-concussion disorder” sounds very much like that for ME/CFS.
The goal is to find a way to “use it and improve it” – not an easy task with central fatigue. Graded exercise – probably because of autonomic nervous system problems – does not always work. Instead, “sub symptom” aerobic exercise; i.e., very, very light exercise which does not cause symptoms – is what works best.
She recommended using the Borg Scale to assess perceived exertion. Never go into the yellow zone of the Borg scale (fairly light). You might be able to do 30 seconds to 2 minutes of “exercise.” This type of therapy involves a slow trudge up the hill.
You should create small goals, expect setbacks, not get worried if you plateau at a certain point for a while, and look for patterns. Check to see if you’re less reactive over time, if any vital signs have changed, if your symptoms have decreased.
She also recommended using a zero-gravity lawn chair – which allows you to gradually change the position of your head over time.
Finding the Right PT
This is clearly not a walk in the park and guidance with a PT is helpful. Thankfully, physical therapy is covered in the vast majority of states. In fact, in many states, it’s not necessary to get a doctor referral to see a physical therapist.
Finding the right physical therapist may take some time, though. While help may not be easy to find, it is improving. She recommended calling PTs and asking about their experience.
- You can use the Vestibular Disorder Association to find that kind of physical therapist. Find a Vestibular specialist here.
- Check out the American Physical Therapy Association for other types of PTs.
Physical therapy alone wasn’t enough for her kids. Problems like mast cell activation syndrome (MCAS) and orthostatic intolerance needed to be addressed for physical therapy to fully work. When they were, though, the combination of PT and good medical treatment worked wonders. One of Miranda’s daughters is conquering fourteeners (14,000 ft. plus peaks) in Colorado every summer, and the other is a competitive swimmer.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.