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 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.
The Gist
- Nicole Miranda (PT, DPT) notes that physical therapy (PT) is a doctorate-level field and that PTs can operate as primary care providers who provide a multidisciplinary approach to treatment that is often lacking.
- Dysautonomia runs in her family. She switched from clinical practice to academia in order to have more of an impact.
- While exercise is often recommended for people with postural orthostatic tachycardia syndrome and other forms of orthostatic intolerance, a survey indicated that many people with dysautonomia have trouble with exercise.
- 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.
- Similarly, many people did not find physical therapy helpful. A problem called central fatigue, which occurs when the brain produces fatigue and pain in response to signals from the muscles, complicates physical therapy greatly.
- Few people had also seen the kind of physical therapist (vestibular physical therapist) that Miranda’s found particularly helpful in dysautonomia.
- If standing produces dizziness then orthostatic intolerance may be a fault; if moving one’s head does, or if the world seems to “bounce”, then vestibular problems may.
- Poor posture commonly results from being unable to be active and can make things considerably worse. Poor posture results in the brain having to work extra to figure out how to move. Rounded shoulders, tight chest muscles, and overstretched muscles in the back can cause shortened breath and problems breathing.
- Tight neck muscles can themselves produce dizziness, blurry vision, and fatigue and can throw our posture off.
- One possible consequence of being bed-bound is that our inner ear – a key balance regulator – and our sensory systems can forget how to work correctly.
- PTs have produced clinical guidelines which can address many of these problems. 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”.
- One kind of post-concussion syndrome (“physiologic post-concussion disorder”) even produces exertion intolerance and post-exertional malaise.
- These types of therapies utilize very low amounts of exertion in order to avoid “central fatigue” – a process by which the brain produces fatigue and pain symptoms in response to small stimuli.
- Finding the right physical therapist can take time but can be worth it. Miranda’s daughters, both of whom have dysautonomia, found help though addressing their mast cell activation and orthostatic intolerance. One is climbing 14,000 ft peaks in Colorado; the other is a competitive swimmer.
https://vimeo.com/499434739
The Poll
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 reconditioning, and improves functioning. (It also has an analgesic (pain-reducing effect, improves cognition, and just makes one feel good.)
The right kind of exercise can help – but finding the right kind of exercise can take time.
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%).
- You can view the presentation here.
Physical Therapy
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.
Central Fatigue
The right kind of physical therapy can get key parts of the brain working together again.
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.
Vestibular Therapy
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
What fatigue and pain looks like to a physical therapist.
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.
Having your head tipped forward changes your orientation to gravity – moving your gravitational centers 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.
Neuroplasticity
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 secs 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.
Many states allow you to access a physical therapist without getting a doctor’s referral
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.
Thanks for the write-up – I’m so glad Amanda has done all this work in the POTS – and now ME – field.
PTs are amazing! When they are ME-literate, they are a must for patients, in my opinion.
I also really like that Visual Analogue Scale – it could be very useful for pacing, too.
Very interesting, Cort.
You and other readers might be interested in checking out this video by Heather Robinson, an athletic therapist providing practical guidance on safely managing exercise in ME/CFS. There’s some handouts she refers to which are unfortunately unavailable, but some might still find it helpful: https://www.youtube.com/watch?v=Iflm68g2Ntg
I was referred to Heather by the Environmental Health Clinic at Women’s College Hospital in Toronto, Ontario, the clinic which diagnosed my ME/CFS and found a cardiologist who could diagnose and treat my POTS. From what I recall, her guidance is very similar to Miranda’s.
David Graham,
Thank you for including that link to the video with the wonderful Heather Robinson.
As she says in her intro, her program got started through her connection to exercise physiologist Staci Stevens at Workwell Foundation.
Which link is that? I’m not finding it.
Nice! I’ve heard great things about her but didn’t know that she had a video out 🙂
The host of the YouTube channel that posted the video has recently posted a comment that links to those handouts you mentioned, David Graham.
Heather Robinson’s contact info is also listed.
In assessing patients with orthostatic intolerances and any kind of “brain injury”, vestibular ocular motor testing is very important because there’s so much that we can do to address the imbalances irrespective of actually being able to drill down with a full diagnosis of what initiated the imbalances. I have see. peoples lives change dramatically with vestibular therapy‘s. These imbalances can create the central fatigue, disrupt sleep, depress cognition and mood. It’s such a simple elegant way to get to the imbalances and address them. I want to agree with this point wholeheartedly.
I also want to completely disagree that physical therapists can be “primary care providers“. I fully support physical therapist. As a Physiatrist, Medical Doctor, they’re a very important part of a team that I oversee To maximize patient safety.. This is a false narrative and agenda that a number of non-physicians are pushing in order to push out Medical degree positions from being what we really are the primary care providers. This is a false and dangerous narrative/agenda that a number of non-physicians are pushing. I have seen many fatal mistakes made by non-physicians who don’t have the kind of training that a physician does. We all make mistakes. I know doctors aren’t perfect, but we also want to make sure that the training and the people that are involved in our care is always going to ensure patient safety. We are a team, and those who are pushing these agendas, don’t recognize that. Be smart, be safe …
From my end – and the video is now available by the way – I didn’t get the impression that Miranda was trying to undermine MD’s. It’s possible that I mischaracterized this aspect of it, and if I did, I apologize.
I got more the impression that she was simply trying to inform viewers of how broad and deep the PT field is now and how it can bring things to the table that most doctors are unaware of. I didn’t know, for instance, that physical therapy is a PHD field.
One of the reasons I really wanted to do this blog was all the new information from the PT side that I was completely unaware of. It clearly has a lot to add.
Neilly, as a physician who was forced to retire because of symptoms and conditions missed by my own colleagues I have to disagree with you. Large numbers of people are actually abandoning the Allopathic Medical Profession as providers entirely because of their dissatisfaction.
The Medical Profession is well known for missing conditions that are well known by other professions- upper cervical subluxations and Lyme disease being 2 great examples. My own chiropractor is well known for diagnosing brain tumours missed by the patient’s GPs.
Equally we are well known for missing other conditions that do not fit into our broader diagnostic categories, and virtually all the professions are weak at detecting conditions that do not resolve as expected. this sort of cognitive and diagnostic rigidity is well known amongst all the professions.
In Australia we have to deal with a situation of sabotage of the Chiropractic profession, which has been trying to build a teaching base in Universities. That sort of interference can only reduce their capacity to build strong diagnostic routines.
In the right circumstances virtually any presenting symptom can be an example of what Prof Murtagh would call a “red flag”symptom and all health practitioners have to be up to date with their skills, and their capacity to pick up on warning signals.
Your views are honestly rather biassed- any practitioner I know wants to be sure that he is ensuring patient safety.
That’s pretty amazing and inspiring. However, I wonder whether Miranda talked about how her daughters were treated with MCAS and what is the process how they went from having to exercise within a range of fairly light to conquering 14,000ft mountain and competitive swimming. Are there any videos or sources that goes in more detail about these?
Unfortunately not. From the lecture I gathered they were given standard treatments for orthostatic intolerance/POTS plus the mast cell treatments. I don’t think she mentioned what they were. She did state that all of it was needed…
This is very interesting especially the link to sensitivities which is something I just mentioned to you Cort. I am not sure how easy it would be to find such a therapist in the U.K. I feel that we need to keep moving as much as we are able but do need help to find the right way so that we do not harm ourselves more in the process.
Linda, the link David Graham provided:
https://www.youtube.com/watch?v=Iflm68g2Ntg
I think of some of my problems at times – the world seems to be bouncing a bit as I walk around – and a recent ER visit which was diagnosed as vertigo. Thankfully the symptoms that prompted that visit have not reappeared. Also, the tinnitus makes me wonder about the vestibular system – which I have hardly ever heard connected to ME/CFS/FM.
Court, regarding the bouncing sensation you feel sometimes walking around in the world: my daughter has something called MdDS (Mal de Debarquement Syndrome) a poorly understood vestibular related condition (or so many researchers believe) that leaves her feeling like she’s bobbing and swaying or rocking all of the time. People (usually women) get it most often after a cruise or long train ride. I have experienced the feeling of bouncing several times myself after getting off an elevator.
The key point here is my daughter obviously shares half my genes and I’ve always felt my ME and her MdDS share a common gene cluster. More curious, she has been diagnosed with Ehlers Danlos Syndrome, hyper-mobility type. Not unlike many of those who are that type, her foot ligaments stretched dramatically during her pregnancies and she now wears a shoe two sizes larger than before giving birth. Most odd of all, exactly like Jeff Wood and Jenna Brea who suffered from ‘cervical loose ligaments’ there are people with MdDS who get extraordinary relief by lifting the head off the brain stem either thru surgery like Jenna, or using a Philadelphia collar like Jeff did for months before he was operated on. Both of us have been tempted to experiment by using the collar but perhaps that isn’t the wisest idea. In any case my daughter is going to see a neurosurgeon later this suffer for an evaluation. If anything extraordinary happens I’ll let everyone know.
There’s a name for this?
I get this motion sensation from being in the sea.
Once it took me a full week after deboarding to stop feeling and moving as if I were on a boat.
Interesting, it says on the nets that certain medications used to treat things like depression, anxiety, or insomnia may help some people.
These are all linked to tryptophan/serotonin metabolism, B3, B6, estrogen and progesterone.
As is ME/CFS, FMS and hEDS.
All of which I also have.
I am finding good results by addressing metabolism/thyroid and oxphos (and reducing tryptophan, serotonin, estrogen and increasing B3 and progesterone, etc).
My joints are a lot more stable, and my muscles are loosening up, amongst other things.
It may be a good idea to try this before things like surgery.
[Look up Ray Peat if interested]
I agree with K that reducing tryptophan, etc. is probably a good idea. You might want to read “Tryptophan Side Effects: L-Tryptophan Is Far From Harmless” at https://www.rolf-hefti.com/tryptophan-side-effects.html (an article praised by Ray Peat)
Cort that bouncing sensation is classic MdDS (Mal De Debarquement syndrome)
Ultimately it has to be associated with the vestibular system and/ or vestibular integrators.
The issue here is that accurate spatial awareness is needed to ensure we can adjust blood flow quickly and accurately for our current activity and our planned activity. I presume that this causes a defect blood flow deficiency and hence fatigue.
The tinnitus is something I have heard of in relation to MdDS but only on a case by case basis. In any case the vestibular system plays a key role in the integration of all sensory modalities and spillover of unnecessary white noise would not be surprising. Another friend has “visual snow syndrome” which is probably worse.
Vestibular therapy, though must be individualised, as we have 5 paired vestibular organs (2x 3 semicircular canals, 2 otolith organs and 2 saccule and these need to work in conjunction and work in conjunction with eye movement and neck proprioception.
It has taken me years to get on top of this and has needed complex treatments involving targeting 2 systems in one session, and repeated review of balance.
Only recently has it got down to one main trouble causing system and one main exercise,
We have a few issues- forward head posture compromises the brain stem and craniocervical stability and can cause a central dysautonomia or direct impingement on the vagus nerve at C2. Forward head posture is a natural bodily defence to imbalance so we have a positive feedback loop there as it compromises brainstem function of itself.
I think the biggest mistake I have made overall is seeing “dysautonomia” as a single symptom cluster driven by a single cause. One case looks very different from another but there are different causes and different symptom clusters. This video is worth the watch.
https://www.youtube.com/watch?v=Or-67usWrqQ
Thanks Mind/Body 🙂
I wonder if Anat Banial’s techniques would help with vestibular problems?
https://www.anatbanielmethod.com/
The Anat Baniel method is rooted in the Feldenkrais method, as originated by Dr. Moshe Feldenkrais. Having FM and vestibular issues, I have been helped more by Feldenkrais practioners (including Anat Baniel) then any other modality. My experience is the Feldenkrais method uniquely lends itself to the sensitivity required in working slowly and carefully with a disrupted nervous system. Luckily information and practioners are much more common than they used to be. Norman Doidge devoted a chapter to Dr. Feldenkrais in his second book.
Interesting.
Comparing Idiopathic Chronic Fatigue and Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome (ME/CFS) in males: Response to two-day
cardiopulmonary exercise testing protocol
Visser e.a 2021
https://www.mdpi.com/2227-9032/9/6/683
Female patients with Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome or Idiopathic Chronic Fatigue: Comparison of responses
to a two-day cardiopulmonary exercise testing protocol
Visser e.a. 2021
https://www.mdpi.com/2227-9032/9/6/682
This is an objective test.
I have several comments, from lots of experience in this area — as a patient. First, I whole heartedly agree that a great PT is a great PT…but not a primary care physician. Someone has to deal with the biochemical issues, and a PT is not as trained as an MD in that.
Second, I agree with Laurie that Feldenkrais is a wonderful modality and I’ve found it useful for pain, strength, flexibility, and awareness. Also with posture.
Third, for me right now the most critically helpful modality has been Alexander Technique. Unfortunately, like physical therapy, and Feldenkrais, it is very dependent on finding the right practitioner – and like Feldenkrais, unfortunately not covered by insurance.
Feldenkrais is fairly accessible to practice on one’s own, though, once you’ve have several classes with a really good teacher — group classes even better than individual. There are plenty of audio tapes available, so you can lie down on your floor and do the movements and reap the reward. Alexander Technique I’ve found to be more dependent on having good one-on-one “lessons”, as the AT people call sessions.
I’d also like to share a tip I learned from a fellow CFS patient early on in my years of disability, as I was just learning how to cope physically with this new reality. It is simply: the Cane. I always take a cane with me when I leave my apartment, and I find it significantly extends my energy.
A vestibular therapist I saw for a few months explained to me why, though I will probably bungle this explanation as I’ve forgotten all the specifics: but basically, the eyes use up a tremendous amount of the brain’s energy, just to keep us upright and balanced. The cane offers another source of input to the brain which reduces the burden and drain on energy caused by the eyes’ needs. If someone can find the more specific and scientific explanation of this, I’d love to see it.
I live in a big city with good public transportation, so don’t have to have a car. I always take my cane with me, though. I gave this theory a test a few years when I spent a few days with full use of a car to get me place to place (with me as driver, but in territory I was familiar with) and I left my cane in the car and did normal errands without it. I became totally worn out much more quickly.
PS Further re the cane, I just use it as a point of reference, almost like a blind person’s cane, and also to help me stay up straight. It is tremendously helpful for the latter, as a reminder not to cave in forward. Key point is not to lean on it but use it for reference.