Walking and Thinking - Not a Good Combo in Chronic Fatigue Syndrome (ME/CFS)

[Cort]

Walking seems simple. It's not simple but it's such a basic activity that we've been hardwired to make it a simple and an almost effortless activity. No planning needed - just get up and go!

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[/fright]If you break walking down, though, it's actually quite a complex exercise. The brain needs to plan out where you will walk, you need to be able to see where to walk, your muscles need to be coordinated to place your feet properly and you need to maintain your balance as you do so. It takes thought (usually unconscious), balance, coordination and visual acuity to manage walking.

Unfortunately, walking is no simple task for people with chronic fatigue syndrome (ME/CFS) and the study below helps to show up.

The Study

Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control studyJan b Eyskens, MSc PT, DO, Pr Ph;1* Jo Nijs, PhD;2 Kristien Wouters;3–4 Greta Moorkens, MD, PhD1,4 JRRD Volume 52, Number 7, 2015, 805–814

This 72 person study asked people with ME/CFS to walk and think at the same time. Granted, multi-tasking is not a strong point for someone with ME/CFS but the researchers weren't asking them for much. They simply asked them to do three basic tasks

• • 1. First they had them start to walk with their eyes open
    2. Then they asked them to close their eyes and walk and then stop
    3. While they were walking they asked them what 100-7 was.

They wanted to determine a couple of things:

• • 1. Did they look to the ground in order to help them place their feet when they started walking?
    2. When they closed their eyes did they stop walking or did they become more clumsy (did they fall over?). Did they quickly reopen their eyes?
    3. When they did the math test did they stop walking or did their gait deteriorate?

Results

Dramatic differences were seen between the healthy controls and the ME/CFS patients. Over half the ME/CFS (56%) opened their eyes during the test but only 5% of the healthy controls did.

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[/fleft]About 25% of the ME/CFS patients looked down at their feet before they began walking compared 1% of the healthy controls. The gait of almost 90% of the ME/CFS patients deteriorated slightly or greatly when they closed their eyes compared to only 11% of the healthy controls.

Finally, 56% of the ME/CFS patients stopped walking in order to figure out that knotty math problem (100-7=?) while only 5% of the healthy controls did.

Reduced Gait Automaticity

"The present observations might explain in part why patients with CFS often report difficulties when walking for a prolonged time and are unable to reach the recommended 10,000 steps per day. "The authors

Many of the ME/CFS patients in the study displayed reduced 'gait automacity". Gait automaticity refers to the process by which we're able to walk without having to think about it. Some of them - those that had to look at the ground to see their feet before they walked - demonstrated reduced gait automaticity from the beginning. Other's demonstrated problems when they closed their eyes and swayed and had to regain their balance. For others it occurred when they did the math problem.

Unfortunately the authors didn’t go into any of the possible reasons for the lost gait automaticity they found in ME/CFS. Let's look at a some possible reasons in other diseases and ME/CFS

Parkinson's Disease

If you look up gait automaticity in the PubMed search base you find a scientific literature dominated by Parkinson's Disease, with some studies of the elderly and stroke thrown in.

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[/fright]Parkinson's Disease is a movement disorder caused by destruction of the dopamine producing neurons in the basal ganglia in the brain.

A similar Parkinson's study suggested that the gait problems weren't simply due to poor signaling in the brain. Reduced executive functioning and working memory - two cognitive problems also found in ME/CFS - contributed to the difficulty Parkinson's patients had trouble thinking and walking at the same time.

The Elderly

The gait problems in Parkinson's probably result from damage to the movement centers in the basal ganglia in the brain. There are other ways to produce gait problems, though. The gait problems in the elderly appear to result from a loss of sensory signals reaching the brainstem. (Receptors in the muscles cue the brain about how to balance and move the body. (The brainstem and basal ganglia are two centers of gait automaticity.

The problem in elderly can be remedied in part by increasing the sensory sensations emanating from the feet. One study found that using textured insoles with firm raised (1.5 mm) nodules in them reduced, interestingly, prefrontal cortex activity. This apparently occurred because the increased sensory signals allowed their brainstems to better automatically manage with their gait; i.e. they no longer needed to use their prefrontal cortex to figure out where to place their feet.

It should be noted that having to think about walking is inherently fatiguing. Using two regions of the brain (prefrontal cortex/brainstem) to do what the brainstem used to do as a matter of course takes a significantly greater energy expenditure

Stiff Person Syndrome

A extreme case of lost gait automaticity occurs in a rare autoimmune disease called Stiff person syndrome (SPS). In SPS the muscles become more and more stiff over time. Alarmingly, they can suddenly lock up causing the person to sometimes pitch forward. In SPS GABA's inhibition of glutamate activity is reduced leaving parts of the central nervous system in a hyperexcitable state.

Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia

A number of issues have shown up that could make walking more difficult for people with chronic fatigue syndrome (ME/CFS). Way back in 1992 Potaznick, in an almost 200 person study, found very high levels of visual symptoms in ME/CFS. A smaller 1994 study had similar results. A 2015 study suggested people with ME/CFS may suffer from visual distortions when confronted with certain visual patterns.

Problems with the ability to track moving objects properly (including while driving a car) showed up in a 2013 study. ME/CFS patients also did poorly on tests examining their ability to direct their visual attention in another.

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[/fleft]Balance and coordination is obviously important for walking but a small 1994 study suggested that disequilibrium or balance problems may be common in ME/CFS.

Another study found that people with ME/CFS used a suboptimal gait and used up more energy than normal when walking. The increased energy use was not solely due to the suboptimal gait. The authors suggested that muscle tension (muscle hypertonicity?). metabolic problems and/or central nervous system problems could be to blame.

Rowe found that the tendons in adolescent ME/CFS patients may not be stretching enough to allow full and easy movement of the muscles.

Davey found reduced activity in the part of the brain that plans movement. If the brain can't figure out ahead of time how to move the body slowed movements and fatigue will likely result. Another study suggested that the brain was having some trouble transmitting signals to the muscles to get them to move.

Muscle Hypertonicity and Gait

Increased muscle hypertonicity is another possible contributor to gait problems. Muscle hypertonicity causes increased muscle tone and stiff, sometimes painful muscles. It's present in SPS, Parkinson's, fibromyalgia and in some ME/CFS patients. It may also be caused in a variety of ways.

The hypertonicity in Parkinson's disease results from basal ganglia problems and manifests itself in short, stiff leg movements, muscle weakness, and poor posture and oddly enough. In Parkinson's patients having difficulty stopping movement once it gets started.

The muscle hypertonicity in FM, on the other hand, may result from sympathetic nervous system activation. (Basal ganglia problems were also recently found in FM, however.) Even small stressors were found to activate the SNS and the trapezius muscles in FM, perhaps causing stiffened, painful muscles.

• Cause of Upper Body Pain in Fibromyalgia (and ME/CFS?) Identified? Plus: ‘Trapezius Myalgia’ – Another Sister Disorder Identified?

I wonder whether much small freezes or stiffening's caused by excess glutamate, SNS activation or other factors, don't occur often in many people with ME/CFS or FM particularly in stressful situations.

Exercise increases muscle stiffness, pain and gait problems for me. I'm more awkward, I walk heavily and am more likely to bump into things after too much exercise. Could exercise induced oxidative stress be affecting the muscle receptors involved in balance?

Training?

The group recommended that gait training occur before GET be attempted. Gait training may seem like a strange idea but gait training in one Parkinson's disease study was helpful.

In his recent book "The Brain That Changes Itself" Norman Doidge described a Parkinson's patient who was able to stop the progression of his disease by explicitly focusing on moving his limbs when he exercised. He was able to walk and exercise normally so long as he focused his attention on his limbs.

Doidge believed the patients focus allowed an undamaged part of his brain - probably the prefrontal cortex - to take over for the damaged part (basal ganglia).

Gait, Balance and the Romberg's Test

I've been puzzled for years why ME/CFS guides don’t suggest using the Romberg's Test as a diagnostic tool. I believe Dr. Cheney first suggested using the test because a high proportion of his patients failed it.

The test is very simple. You stand, put your hands on your hips and you close your eyes for 30 seconds. (Another variation of the test has you put your arms out from your shoulders in so that you're forming a cross.) If I with my more moderate case of ME/CFS/FM immediately begin to topple sideways, I imagine that many others will as well.

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[/fright]A failed test indicates that one's sense of proprioception - where you physically are in the world - is out of whack. It suggests that the sensory information relayed from the inner ear and the muscles to the spinal cord either is not getting processed or sent properly.

The Romberg's test is positive in conditions such as vitamin B12 deficiency, neurosyphillis, sensory peripheral neuropathies, some multiple sclerosis patients, inflammatory demyelinating polyradiculoneuropathy, Friedreich's ataxia, Ménière's disease and lumbar spinal stenosis. (How validating it would be to ME/CFS or FM if a positive study allowed ME/CFS or FM to be added to that list?)

People with proprioceptive disorders experience difficulty

• • • With motor planning - figuring out how to move. Before one moves the brain has already planned ahead out how to do it. If it's not planning ahead (and doing it effortlessly) then you have to step in and try to figure out how to do so. That results in fatigue and slowed movements.
    • With motor control - this occurs when the brain has planned out how to move but you have trouble following the plan.
    • Postural stability - this occurs when you have trouble staying upright or you're clumsy when staying upright. People with these first three problems tend to bump into things, they may fall more frequently and they don't like elevators.
    • Grading movement - if you feel like you grip things more tightly than needed then you're having trouble "grading movement". People with problems with grading movement tend to walk too hard, grip too hard, talk too loud, etc.

One's sense of proprioception can, however, be enhanced by training. Even if one part of the brain has gotten blasted, the neuroplastic nature of the brain means that other parts can step in partially recover functioning in some cases.

Oliver Sacks described a woman who lost her proprioception entirely due to a viral infection of her spinal cord. She could not move properly or modulate the tone of her voice. She was eventually able to learn how to move again - if slowly and stiffly - by watching her feet intently when she walked (she used her prefrontal cortex) and she learned how to talk normally.

The Feldenkrais method[26] and Alexander Technique, standing on a wobble or balance board, using an exercise ball, Slacklining and disciplines such as Yoga, Wing Chun and T'ai Chi Ch'uan can all help one relearn at least some proprioception. The effectiveness of each of these disciplines at enabling proprioception can be enhanced by closing one's eyes when doing them.

Conclusion

It appears that a panoply of problems - from brain deficits to balance issues to metabolic problems to muscle issues - could interfere with walking in ME/CFS. Several portions of the process of walking - such as visually scoping out your path, planning the movement, moving your muscles smoothly, balancing properly, etc. could be effected.

It's no wonder that for many people with ME/CFS a walk in the park is often anything but relaxing.

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[/fright]This study suggested that, as with Parkinson's patients, people with ME/CFS have cognitive problems with resource overload when trying to walk and think at one time as well. That overload might not be noticed in one's daily life; it might consist of simply wanting to stop walking and think, or in small balance problems when asked to think or talk, but it's unusual and probably reflects both cognitive and physical abnormalities.

Since gait problems can be induced in several ways (basal ganglia damage, sympathetic nervous system activation, muscle receptor issues and surely others) - all of which could conceivably apply in ME/CFS - and/or FM, it's impossible to tell the cause.

The gait, visual and other problems, indicate what a full-body illness ME/CFS is. This is an illness that can affect many aspects of the body.

 

[Katie]

Good blog.
When I first got sick this is what I noticed the most, my balance was off and after walking for 5 minutes my right leg would drag and no doctor has found the reason.
I always have a lot of bruises on my arms and legs from banging into walls, tables etc. It is definitely worse when I'm more tired or try to go too fast -it's hard changing old habits-I did a lot of fast walking with my job

 

[Seasprit]

This article should be essential reading for all physical therapists who work with clients who have a fibro DX. I am 3 years post total right hip replacement and I now feel that the usual PT "one size fits all" approach can actually make a bad/recovering situation worse. After 3 rounds of PT, and several years, I was fortunate enough to discover Gyrokenisis/Gyrotonics* which addresses some of the neurological issues involved in gait and proprioception. Also invaluable is a skilled trainer who taught me "less is more" and understands the necessity of walking a fine line between challenging new patterns and staying within my pain/limits. Keeping all that in mind, my sessions started at 20 minutes once a week and over 3 months I've gradually moved up to two, 45 minute sessions! Slow but sure with no major flares!!
After 3 years, I am finally walking without a cane. The importance of "feeling the ground" cannot be under-rated. I am now wearing a running shoe made by Altra - the makers of barefoot shoes, with a zero degree drop. It looks like a regular running shoe, is waterproof for snow and slush and is comfortably padded. It has a large toe box allowing the toes to spread out and treads that mimic the pressure lines of the foot. Everyone finds their own solution but I thought I would share my small success story!
*https://www.gyrotonic.com/gyrotonic.aspx

 

[Tory]

I can't think when I'm just standing either

 

[Cort]

This article should be essential reading for all physical therapists who work with clients who have a fibro DX. I am 3 years post total right hip replacement and I now feel that the usual PT "one size fits all" approach can actually make a bad/recovering situation worse. After 3 rounds of PT, and several years, I was fortunate enough to discover Gyrokenisis/Gyrotonics* which addresses some of the neurological issues involved in gait and proprioception. Also invaluable is a skilled trainer who taught me "less is more" and understands the necessity of walking a fine line between challenging new patterns and staying within my pain/limits. Keeping all that in mind, my sessions started at 20 minutes once a week and over 3 months I've gradually moved up to two, 45 minute sessions! Slow but sure with no major flares!!
After 3 years, I am finally walking without a cane. The importance of "feeling the ground" cannot be under-rated. I am now wearing a running shoe made by Altra - the makers of barefoot shoes, with a zero degree drop. It looks like a regular running shoe, is waterproof for snow and slush and is comfortably padded. It has a large toe box allowing the toes to spread out and treads that mimic the pressure lines of the foot. Everyone finds their own solution but I thought I would share my small success story!
*https://www.gyrotonic.com/gyrotonic.aspx

That's great Seaspirit. I like slow but sure! I sent your comment on to Peter Rowe - this

"The Gyrotonic method is an orginal, and unique movement method that enables simultaneous lengthening and strengthening of muscles, stimulates circulation, and enhances joint mobility, and coordination."

seems like right up his alley...

 

[Cort]

I can't think when I'm just standing either

 

[dee]

I walk like I'm 100 and can only think ONE thing at a time like getting water into a glass! then next step, take it to where I'm going to eat. that is step 2! little by little I may get there physical AND mentally!!!
see, thinking and standing are MULTI-TASKING Cort!

"THE WALLS HAVE BECOME MY FRIENDS!"

 

[Molly's mom]

I have fm and in the past I had a great deal of difficulty walking and thinking. At its worst I could not walk and talk at the same time. All of my movements were slowed and I used a walker. It would take a prohibitively long time just to get up to go to the bathroom. I had mild dementia and incontinence. I saw many docs and no one knew how to address it. In my case I was held back by the fact that docs were trying to pin it to fibromyalgia. I was unbelievably fortunate to see a neurologist who had the answer. He diagnosed it as "normal pressure hydrocephalus" ie "water on the brain". The diagnosis was arrived at through a thorough interview and testing. I had all 3 of the classic symptoms of NP hydrocephalus: gait disturbance, mild dementia and incontinence. Further studies through a CT scan and then a spinal tap confirmed the diagnosis. The CT scan showed enlarged ventricles. Removal of even a small amount of spinal fluid at the time of the spinal tap relieved the symptoms but only for an hour or so. I then had brain surgery for the insertion of a permanent shunt to drain the excess fluid. The results were immediate and nothing short of miraculous. I now walk normally, no longer am I incontinent and the dementia has cleared. I still have FM and am pretty compromised by that, but I do have my life back. I write this in some detail in hopes that it helps someone. I just cringe when I read the comments here about walking and thinking difficulties because I know what it is like, holding onto walls and using a walker and trying to remember from one moment to the next what I was doing. This will not be an answer for everyone, but I pray that some others can be helped as I was. I call myself the "Miracle Baby". My friends and family are thrilled to have me back.

 

[Merida]

Thanks, Cort. Great article. I was 8 years into this when a neurosurgeon finally did a Romberg test - I failed. The neurosurgeon did a neuro exam that lasted 30 plus minutes. Plus, he ordered sophisticated urodynamic studies that finally showed I had a lower motor neuron issue. All the previous ( and since) neurologists spend about 1 to 2 minutes max on neuro testing. Terrible. It would be helpful if someone could standardize the neurology exam for CFS/ME/FM patients. Plus, how many CFS/ME have had sophisticated urodynamic studies??

 

[Merida]

I have fm and in the past I had a great deal of difficulty walking and thinking. At its worst I could not walk and talk at the same time. All of my movements were slowed and I used a walker. It would take a prohibitively long time just to get up to go to the bathroom. I had mild dementia and incontinence. I saw many docs and no one knew how to address it. In my case I was held back by the fact that docs were trying to pin it to fibromyalgia. I was unbelievably fortunate to see a neurologist who had the answer. He diagnosed it as "normal pressure hydrocephalus" ie "water on the brain". The diagnosis was arrived at through a thorough interview and testing. I had all 3 of the classic symptoms of NP hydrocephalus: gait disturbance, mild dementia and incontinence. Further studies through a CT scan and then a spinal tap confirmed the diagnosis. The CT scan showed enlarged ventricles. Removal of even a small amount of spinal fluid at the time of the spinal tap relieved the symptoms but only for an hour or so. I then had brain surgery for the insertion of a permanent shunt to drain the excess fluid. The results were immediate and nothing short of miraculous. I now walk normally, no longer am I incontinent and the dementia has cleared. I still have FM and am pretty compromised by that, but I do have my life back. I write this in some detail in hopes that it helps someone. I just cringe when I read the comments here about walking and thinking difficulties because I know what it is like, holding onto walls and using a walker and trying to remember from one moment to the next what I was doing. This will not be an answer for everyone, but I pray that some others can be helped as I was. I call myself the "Miracle Baby". My friends and family are thrilled to have me back.

Molly's Mom,
Such an important story. The neurosurgeon I saw also thought I had high CSF pressure based on a CINE MRI study. He told me that often he had to shunt people like me. I refused surgery ( for Chiari O ) at that time, hoping that I could find a traditional osteopath or NUCCA chiropractor to help - as I was fine prior to a neck injury. i tried Diamox - didn't take it long enough to know for sure, but had side effects. Still working on this structure thing with a great osteopath.

Did your neurologist mention Chiari ? The neurosurgeon I saw actually measured and calculated my posterior fossa volume( space inside bottom of skull). It is small, with short clivus, like Chiari people, but no true
Chiari.
Thank you so much for sharing. You might find Dr. Diana Driscoll's posts interesting.

 

[Molly's mom]

Thanks Merida. If my neurologist considered a Chiari malformation in his analysis I don't know. He didn't mention it. He went straight forward with NP hydrocephalus diagnosis. Little doubt in his mind. The lumbar puncture was key. If I had not improved by having a small amount of spinal fluid removed, surgery would not have been performed. My improvement with the removal of spinal fluid was very subtle. A physical therapist was there to compare pre and post draw symptoms. The physical therapist said she saw no improvement, but my wonderful husband saw a big change. Thankfully the surgeon took his comments into account and proceeded with the surgery. The surgery only took about an hour, amazing! Good luck to you in your search for relief.

 

[tatt]

having trouble thniking when standing can be a symptom of Postural Tachycardia Syndrome.

I have to walk slowly or my heart beat goes through the roof and I know that will cause problems for days. Get a bit tired of being passed by those 20 years older though.