A Different Kind of Neurological Disorder
Chronic Fatigue Syndrome (ME/CFS) is sometimes described as a neurological disorder – as if that term described something discrete. When people first spoke of ME/CFS as a neurological disorder they probably meant a central nervous system condition – problems with the nerves in the brain or spinal cord. Van Elzakker and others opened up the idea that infections in the vagus nerve and dorsal root ganglia and other nervous system tissues close to the CNS tissues may be present.
Fibromyalgia studies suggest damage to the small unmyelinated (and perhaps larger myelinated) nerve fibers on the periphery of the body in the skin and perhaps extending inwards may have occurred in some people. Some postural orthostatic tachycardia studies suggest that ‘cardiac denervation’ – damage to the nerves in the heart -may be present.
Now Dr. Peter Rowe – one of the first researchers to study orthostatic intolerance in Chronic Fatigue Syndrome (ME/CFS) – is breaking new ground again with a different kind of nervous system issue. He believes something has gone wrong with the nerves that govern a very basic function – movement.
The breakthrough for him came when he realized that he was able to produce symptoms of pain, fatigue, brain-fog, light-headedness, nausea, sweating and flushing, vision changes, headache, etc. simply by putting pressure on certain parts of the spinal cord or nerves in the body, arms or legs. Conversely, removing the tension in those areas could ease his patient’s fatigue, cognitive problems, light-headedness, nausea, reflux, sweating, and flushing, many types of vision changes, headache, and other symptoms.
Rowe describes a remarkably fluid body where, as we move, bend, and strain, our bones, joints and muscles and nerves constantly change position to stay in harmony. Our nerves and our spinal cord actually lengthen or shorten – and not just a little bit – as we move. The median nerve in your arm, for instance, elongates 20% as you move your arm from a flexed position (as if you were doing a curl) to an extended position (where your arm is straight).
The spinal cord elongates enough for doctors to be able to use it to test for the central nervous system inflammation seen in spinal meningitis. Raising the legs of a person lying flat causes the spinal cord to come in contact with inflamed tissues at the dural membrane (at the base of the brain?) causing neck pain if you have spinal meningitis.
These nerves contain both motor and sensory fibers, and many contain autonomic nerve fibers as well as connective tissues. As they’re elongating and contracting they’re relaying information on such basic functions as touch, pressure, pain, temperature, position of the body, blood volume, blood flow, etc. back to the brain.
But what if those nerves aren’t moving in tandem in with the muscles? What if inflammation or some other factor has restricted their ability to elongate? Mechanical tension in the nerve will build causing pain and other symptoms. Reduced blood flows, reduced muscle recruitment, improper muscle contractions, etc. may result. Over time the continuous pain signal inputs to the dorsal horn neurons from the damaged nerves could contribute to the central sensitization found.
All that could translate into pain, problems with exercise, muscle fatigue, autonomic problems, and perhaps even orthostatic intolerance.
Forty-eight consecutive adolescent ME/CFS patients entering Rowe’s Johns Hopkins Clinic and forty-eight healthy controls were assessed for range of motion in eleven areas.
The ME/CFS adolescents were found to have significantly restricted ranges of motion (ROMs) in six of those areas. Restricted ranges of motion were also found in healthy controls, but they were much more common in ME/CFS (p<.001).
Perhaps more importantly, exceeding their range of motion rarely produced symptoms in the healthy controls (4%) but often did in the adolescents with ME/CFS (40%) (p<.001).
The upshot was that restricted motion was much more common in the adolescents with ME/CFS, and when it was exceeded they often experienced pain, fatigue, and other symptoms while the healthy controls rarely did.
Think about it: if every time you exceed your range of motion you experience pain, fatigue and a host of other symptoms – you’re not going to be moving much. Could bollixed ‘neurodynamics’ have put people with ME/CFS in lock-down mode? Is this at least part of what is causing movement to be so difficult at times?
How It Starts
Rowe believes the onset of the neurodynamic problems probably preceded ME/CFS or FM. Essentially the system was primed for trouble and simply needed a push — an infection perhaps in combination with prolonged period of inactivity — to freeze into place.
During that time a kind of ‘frozen’ muscle/nerve system, the antithesis of the fluid, dynamic system that existed before, became locked into place. Once that happened, nerve elongation became compromised, nerve tension occurred, and movement often became painful and a source of concern.
That spells trouble. Rowe noted that the costs of inactivity are so high that it’s now standard medical practice to get even ‘the sickest hospitalized patients’ mobile in some fashion as early as possible.
He readily acknowledged the difficulty of this, particularly for the most severely ill, in what is, by definition, an activity-challenged illness.
Rowe doesn’t push patients to get more exercise; instead he offers treatments and therapies such as florinef, beta blockers, midrodine, and bodywork that provide more energy first.
Exercise and Stress
Patients with neural and soft tissue restrictions in the range observed in those with CFS typically experience worse symptoms after exercise. We speculate that this occurs as a consequence of the repetitive mechanical tension exerted on an already less than fully compliant nervous system. Rowe et. al.
These types of neurodynamic issues clearly have the potential to muck up exercise in ME/CFS. If the nerves are compressed or cannot elongate then every movement during exercise will produce mechanical tension; i.e. pain and inflammation. Indeed, post-exertional malaise could simply result from the inflammation and heightened central sensitization that occurs as the brain was slammed with pain signals. (The widespread pain after exercise that can occur in areas that have not been exercised suggests that central sensitization has occurred.)
I don’t know if my range of motion is affected, but Rowe’s work grabbed me because intuitively it fits my experience post-exercise. The range of motion I can go through without producing pain declines dramatically after exercise. Sometimes it seems I can hardly move without pain darting across my body.
Stress, which for me tends to be accompanied by rapid, short breathing and tightened musculature, has a less dramatic but similar effect.
The short uptakes in breath that I associate with stress appear to lift my body into a painful alignment, whereas breathing from the belly puts it into a less painful position. My guess is that both exercise and stress in my case move the muscles and nerves into more compromised positions thereby causing pain.
Some of the practices Rowe recommends, such as yoga and tai chi, involve both relaxation and movement.
My guess based on my experience is that fluidity of movement declines over time in ME/CFS, and that higher percentages of adults would have restricted ranges of motions. I’ll bet that the same study done in Fibromyalgia would have more ROM and higher levels of distress.
Rowe determines if patients have altered ‘neurodynamics’ by doing ‘neural provocation’ tests where the limbs are put into positions which require nerve elongation. These strikingly mild tests — which require no muscle exertion — can involve simply have someone slowly raise their leg while lying down to 20 degrees.
When this was done to one young man with particularly neurodynamic issues his fatigue, brain fog, and visual problems skyrocketed over the next twelve minutes. At the end of that short time he was having trouble forming sentences.
Signs and Symptoms
Most obvious is a stiff upper and middle thoracic spine with rounded shoulders and a forward head. Patients find that it is difficult to straighten up and tuck the chin. The rib cage is often very tight, and rotational range of motion is markedly limited. Pressure on the rib cage can give rise to diverse symptoms including vision changes, lightheadedness (to the point of near-fainting), and other autonomic nervous system sensations. Rowe
The muscles near where the nerve cross the joints, in particular, may reflexively shorten and may appear firm, tense, and tender to the deep touch. Even the skin can become affected as it loses its ability to move and glide and adjust temperature accurately, and may begin to sweat. Other indications are reduced range of motion (reduced flexibility), increased resting muscle tone, and pain or other nerve sensations.
Physical therapists associated with Dr. Charles Lapp have noted that the pinched-in chests and rounded shoulders can make it difficult for people with ME/CFS or FM to take deeper breaths.
Rowe finds that stiff upper and middle thoracic spine with rounded shoulders and a pushed-forward head is common in ME/CFS. Straightening up and tucking one’s chin in is often difficult. In my experience exercise significantly exacerbates these problems.
For me, the tightness in my upper body begins around my sternum and then accelerates as you go upwards. I have a very lax abdomen and a very tight chest area. Tucking my chin produces pain in the back of my neck.
Rowe also finds that as many as 2/3 of the adolescents he sees have joint hypermobility, and a group has Ehlers-Danlos Syndrome, a hereditary connective tissue disorder causing the same symptoms. Impaired neurodynamics particularly occur in this group where the nerves pass by hypermobile joints or where lax ligaments anchor the spine.
Treatment of areas of diminished soft tissue compliance and adverse neurodynamics … has become an important part of our treatment approach to CFS. – Rowe
The goal of his physical therapy is to enable normal movement by reducing the restricted range of motion present. He noted at a CFSAC presentation that the type of physical therapy done in his office is the one treatment his pediatric patients invariably ask for more of.
Specific types of gentle movement are the key. His team uses methods developed in Australia by Robert Elvey, P.T., David Butler, P.T., Jean-Pierre Barral, D.O., and Alain Croibier, D.O. in France. Anything that asks the tense tissue to stretch is out.
You basically start from where you are – with a ‘frozen’ muscle/ nerve interface – and cajole it to relax and move. Muscle and myofascial stretching, for instance, are no-no’s as are ‘direct joint and neuromobilization’ techniques.
Instead, ‘indirect techniques’ that are applied in a ‘direction opposite to the barrier to movement’ work. The techniques include myofascial release ‘in the direction of ease’, functional technique, and strain and counter-strain and cranio-sacral techniques. Calling these techniques ‘very subtle’, Rowe nonetheless asserts they can provide ‘excellent’ results. He noted that this muscle/nerve work is one treatment his patients always want to return to.
Are neuromuscular problems causing ME/CFS? Even Dr. Rowe probably wouldn’t say that. Are they contributing significant amounts of pain, distress and disability to the disorder? That he would agree with. My guess is that Dr. Rowe has opened up something big. Check out the interview we did with him below.
- Unrestrained: An Interview with Dr. Peter Rowe
- Find out more about Dr. Rowe’s approach and his Solve ME/CFS Association neuromuscular study