Re: Exercise and nerve loss

[Guest guest]

Hi Donna,

I know what you want. Not sure if this info will help or not. ~ G

Ann Readapt Med Phys. 2006 Jul;49(6):289-300, 375-84.

Fatigue and neuromuscular diseases.[Article in English, French]

Féasson L, Camdessanché JP, El Mandhi L, Calmels P, Millet GY.

Unité de Recherche PPEH-EA 3062, Faculté de Médecine Jacques-

Lisfranc, Université Jean-Monnet, Saint-Etienne, France. Leonard.

PURPOSE: To identify the role of fatigue, its evaluation and its

causes in the pathophysiology context of acquired or hereditary

neuromuscular diseases of the spinal anterior horn cell, peripheral

nerve, neuromuscular junction and muscle.

MATERIAL AND METHODS: A literature review has been done on Medline

with the following keywords: neuromuscular disease, peripheral

neuropathy, myopathy, fatigue assessment, exercise intolerance, force

assessment, fatigue scale and questionnaire, then with the terms:

Fatigue Severity Scale, Chalder Fatigue Scale, Fatigue Questionnaire,

Piper Fatigue Scale, electromyography and the combination of the word

Fatigue with the following terms: Amyotrophic Lateral Sclerosis

(ALS), Post-Polio Syndrome (PPS), Guillain-Barre Syndrome, Immune

Neuropathy, Charcot-Marie-Tooth Disease, Myasthenia Gravis (MG),

Metabolic Myopathy, Mitochondrial Myopathy, Muscular Dystrophy,

Facioscapulohumeral Dystrophy, Myotonic Dystrophy.

RESULTS: Fatigue is a symptom very frequently reported by patients.

Fatigue is mainly evaluated by strength loss after an exercise, by

change in electromyographic activity during a given exercise and by

questionnaires that takes into account the subjective (psychological)

part of fatigue. Due to the large diversity of motor disorders, there

are multiple clinical expressions of fatigue that differ in their

presentation, consequences and therapeutic approach.

CONCLUSION: This review shows that fatigue has to be taken into

account in patients with neuromuscular diseases. In this context,

pathophysiology of fatigue often implies the motor component but the

disease evolution and the physical obligates of daily life also

induce an important psychological component.

Muscle Nerve. 2003 Apr;27(4):471-7.

Inherited polyneuropathy in Leonberger dogs: a mixed or intermediate

form of Charcot-Marie-Tooth disease?

Shelton GD, Podell M, Poncelet L, Schatzberg S, E,

HC, Mizisin AP.

Department of Pathology, University of California, San Diego, La

Jolla 92093-0612, USA.

A spontaneous distal, symmetrical polyneuropathy in related

Leonberger dogs with onset between 1 to 9 years of age was

characterized clinically, electrophysiologically, histologically, and

morphometrically. Exercise intolerance and weakness was associated

with a high-steppage pelvic-limb gait, a loss or change in the pitch

of the bark, and dyspnea.

Neurological examination revealed marked atrophy of the distal limb

muscles, depressed spinal and cranial nerve reflexes, and weak or

absent movement of the laryngeal and pharyngeal muscles.

Electrophysiological evaluation was consistent with denervation and

was characterized by loss or marked attenuation of compound muscle

action potentials and slowed motor nerve conduction velocity. Muscle

biopsy specimens showed neurogenic atrophy. Chronic nerve fiber loss

associated with decreased myelinated fiber density and a shift of the

axonal size-frequency distribution toward smaller fibers was the

predominant finding in peripheral nerve specimens.

Pedigree analysis of a large multigenerational family, including nine

sibships with at least one affected individual, suggested X-linked

inheritance. Mutational and linkage analysis of this family may aid

in identification of the chromosomal loci and gene responsible for

this inherited axonal neuropathy. Further characterization of this

inherited axonal neuropathy may establish the Leonberger dog as a

spontaneous animal model of inherited axonal neuropathy and possibly

lead to the discovery of a new gene or genes associated with axonal

variants.

....and from http://www.lindacrabtree.com/cmtnews/Exercise/Dr.%

20%20interview.html

Dr. : That is a complex question. In normal muscle, hypertrophy

is the major mechanism for strength. The muscle is, in a

sense, 'damaged' by strenuous weight lifting but then is built up by

the body and becomes larger and stronger. This hypertrophy is obvious

in body builders.

In CMT, similar mechanism can occur but to a much lesser degree. The

nerves that send signals to the muscles to contract

are 'malfunctioning'...almost like a faulty fuel line in an

automobile...so the engine sputters. Just as in a car, you wouldn't

want to simply " put the pedal to the metal " to compensate for the

sputtering. Rather, you would ease down on the gas pedal to slowly

bring the car up to cruising speed. In CMT, if you push too hard, the

muscles will start to fail and you will overtax the neuromuscular

system (nerve-muscle unit) and end up weaker. This is overwork

weakness.

[Guest guest]

I think I look at it like this:

exercise that causes aggrivation = bad

exercise that builds strength and makes it easier to deal with the nerve and

muscle degeneration = good

O

[Guest guest]

Hi Donna,

My  comments were based on things I've read from Italian studies and the renown

Italian physician, Paolo Vinci, MD.

Here is a link to some information from Dr. Vinci.  While he doesn't give the

medical studies to substantiate his comments, he has a great deal of experience

with CMT patients, so I view his comments as credible.  His recommendations are

outlined below.  Also, after Dr. Vinci's comments, I've copied information from

an overuse study that was conducted in Italy.  Hope that is helpful as well.

It is my personal opinion that exercise is a fine balance we all must figure out

for ourselves.  Pushing too far can be harmful, but on the other hand, if we do

nothing, our healthy muscles will atrophy along with the affected muscles, so we

end up even weaker.  The challenge is finding the right balance that strengthens

the healthy muscles while not damaging the fragile nerve endings, which will be

different for each of us and will likely change over time as the CMT

progresses. 

Dr. Vinci recommends daily activities as the best therapy and also getting

professional guidance to achieve the right balance with supplemental exercise,

which is what you are doing!  If anyone has information from Dr. Vinci that is

more current than this, I'd welcome the opportunity to read it.  In the

meantime, Donna, here you go...

http://www.geocities.com/dgosling_rn/rehab.html

Management & Rehabilitation in Charcot-Marie- Tooth Disease (1997-1998) by Paolo

Vinci M.D.

Specialist in Physical Medicine and Rehabilitation - Professor of the School for

Physiotherapists- University of Rome-Italy; Medical Manager Physiatric and

Orthopedic Specialized Hospital of Ariccia (Rome)-Italy

1. Improvement of muscle strength, resistance and balance

- If the muscle to be strengthened is only able to contract with no resistance

of any kind, a strengthening exercise program is either ineffective or may cause

increased weakness.

- If your muscle is able to contract with weight applied,you should see a

physiotherapist to find out the maximum weight the muscle is able to

tolerate.There was a study done of exercise in Neuromuscular Diseases, by Dr.W.

Fowler Jr of the Rehabilitation and Research Training Centre in Neuromuscular

Diseases at UC . The muscle can then be exercised three days a week,

starting with three sets of four repetitions; this can be increased over a

twelve week period to eight repetitions per set. A modest increase in strength

may result.

- Strengthening exercises which use heavy weights should always be avoided:

increased weakness and muscle cramps may occur.

- It is very important to avoid immobilization, if possible, because it causes

disuse muscle atrophy as well as loss of the motor patterns you have learned,

which compensate for the weakness in some muscle groups: it is advisable to be

physically active for 2 or 3 hours every day.

- Exercises designed to improve coordination and balance can help, especially

after a period of bed rest. (e.g. after illness or a fracture requiring rest in

bed).

- It is impossible to reduce the tiring of your muscles: the only therapy is...

rest.

- Leading the most normal life possible is the best active therapy

----------------------------------------------------------------------

CMT-Hands.....(Overwork weakness in CMT)

---

http://www.aicmt. org/overwork. htm

Overwork weakness in Charcot-Marie- Tooth disease.

Vinci P, Esposito C, Perelli SL, Antenor JA, FP.

Department of Rehabilitation of Charcot-Marie- Tooth Disease and Other

Neuromuscular Disorders, Specialized Rehabilitation Hospital L. Spolverini,

Ariccia, Rome, Italy.

OBJECTIVE: To determine the incidence of overwork weakness in Charcot-Marie-

Tooth disease (CMT). DESIGN: Prospective survey.

SETTING: Rehabilitation department for CMT in an Italian tertiary care hospital.

PARTICIPANTS: A total of 106 outpatients with CMT, selected for absence of other

causes of weakness (age range, 11-69y), and 48 healthy volunteers (controls).

INTERVENTIONS: The strength of 2 intrinsic hand muscles (abductor pollicis

brevis [APB], first dorsal interosseous) in the dominant and nondominant hands

was graded by using manual muscle testing and a modified Medical Research

Council (MRC) Scale.

MAIN OUTCOME MEASURES: The side of the stronger muscle and the difference in

strength between the nondominant and dominant muscles.

 

RESULTS: Muscles were stronger on the nondominant side in 65.57% of patients

versus 1.04% of controls, and on the dominant side in .94% of patients versus

84.38% controls. The difference in strength for first dorsal interosseous was

..51 in patients and -.32 in controls (P>.01). The difference in strength for APB

was .65 in patients and -.35 in controls (P>.01).

[Guest guest]

This is the same exercise question I had last week. It's nice to see these

studies, though I am still unclear regarding 'why'.

I understand that after exercise CMT folks - actually, anyone - will be weaker.

But, for the CMT individual, is this weakness also just temporary? Or, is there

actual damage going on to our nerves? If so, which nerves? Also, if so, is this

normal, and is it temporary?

My question again - is there something produced in our bodies when we exercise

which is toxic to our nerves?

Also, has anyone heard of AICAR, an endurance drug?

[Guest guest]

I have weakness right after exercise . After I recover I feel stronger. To me

exercise is just walking on the treadmill not lifting weights or anything.

[Guest guest]

I don't have weaker muscles from exercise. Because I do resistance

training, I have maintained muscle, and even built muscle. But then I

have a axonal (Type 2) form of CMT in which my nerves are reinnervating

themselves. It has been this way my whole life.

In CMT 1A, overwork in exercise can cause nerve damage because the

myelin wrapping around the nerves frays.

The only thing I can think of that might possibly be 'toxic' after exercise is

an overproduction of creatine, but an exercise physiologist can better answer

this.

Gretchen

[Guest guest]

Hi Gretchen,

I asked my physio about this and he too said that the nerves would

experience some sort of damage (what you call fraying) but that nerves

repair themselves.

Then my follow up question was whether a CMT nerve repairs differently or in

a faulty manner, thus meaning it is better to limit, or alter, or approach

exercise in a different way...

We decided I would ask the question to the clinical specialist at the

neuromuscular clinic at the National Hospital of Neurology and Neuropathy in

London. This is the same clinic that Reilly, a CMT1A specialist,

practices in. I am always asking questions like this...

I will keep you all posted on what 's team says.

Now a different question. What exactly does CMT1A do, with the duplication

gene? Is it too little myelin proteins produced (thus demyelinating), or is

it overproduction of the protein in myelin, causing a deformation and thus

demyelination? This answer will help my nutritionist to try to understand a

bit better the approach to foods.

For example, before I thought it was too much protein, so we went protein

light, but I found myself completely craving red meat, so abandoned the

minimal red meat approach. My physio says that approach also was bad from a

muscle maintenance point of view, where we need to eat proteins to ensure

fuel for muscles and keeping a constant insulin level in the blood so that

carbs are burnt correctly (not leading to insulin spike, carb storage, and

muscle loss due to the body using protein for quick food as it is easier to

break down)... Anyway, just another question as I try to understand the

mechanics / medical working of CMT1A to better adjust my lifestyle and

physical training routines.

Thanks everyone!

Donna

[Guest guest]

Hi Donna,

With collateral sprouting and reinnervation, CMT nerves rewire

themselves. In Paolo Vinci's book he details this, but he remarks

this is only temporary. I have talked with him about this and my own

situation and EMG/NCV results still show the reinnervation goes on.

If you haven't read the first part of Paolo's book, do, because he

explains the nerve reinnervation, sprouting. If you join AIMCT.org

the book is free.

In my own experience, resistance training/exercise has benefitted me

greatly, while endurance training just makes me very tired. Also I have

discovered that 'form' is better than 'reps'. In other words, 2 sets of sit ups

done in correct all over body form is better than 4 sets of sit ups with no

concentration on form. You might also

want to contact Dr. Chetlin and staff at West Virgina

University.

" Dr Chetlin, PhD, CSCS, HFI, has co-authored two articles that

were published in the Stength and Conditioning Journal. The two

articles written with Haff, Aontonio, Hoffman, Kraemer, and Vingran

focused on the current issues with elite athletes, and Anabolic -

androgenic steroids. A third article co-authored with , Gutman,

Yeater, and Alway addressed the effects of exercise and creatine on

myosin heavy chain isoform compostiion in the vastus lateralis muscle

of patients with Charcot-Maire Tooth Disease was published in Muscle

& Nerve " . http://www.hsc.wvu.edu/som/ot/research.asp

" Dr Chetlin, PhD, CSCS, HFI, has co-authored a chapter with Dr

Lori Gutman, MD in a book for patients with Charcot Marie Tooth

Disease. The chapter entitled, " Physical Exercise Programs for

Patients with CMT " , was published in 2007 in " The patient's Guide to

Charcot-Marie-Tooth Disorders " .

http://www.hsc.wvu.edu/som/ot/research.asp

D. Chetlin, Ph.D., CSCS, HFI Associate Professor

Campus Office: Health Sciences Center South - Room 8309

Phone: 304-293-1955 Fax: 304-293-7105 E-mail: rchetlin@...

As for your 2nd question, in CMT 1A, it is overproduction of the gene

that causes symptoms.

As for foods, my trainer and also physical therapist encourage me to

eat a protein rich meal before working out. Since I work out mornings

, my 'breakfast' meal is more like most people's dinner meal, but less. Like

chicken, cottage cheese, an egg and vegetables. Then throughout the day, I eat

less food frequently, with dinner being my smallest meal. I need that morning

protein for fuel the day ahead of

me, not to sleep on!

Gretchen

[Guest guest]

Gretchen,

Thank you for this information.  I tried to locate the AIMCT.org site, but

couldn't find it.  Do you have a specific link I could try?

Thanks again,

A

ngela