Re: Muscle overwork leads to weakness - NO says Van Pomeren

[Guest guest]

Wow! I wonder what it is that I feel when I do overdo things. I'm very easily

able to do that. Not now actually because I live in Los Angeles where everyone

drives a car, but I lived the last 15 years in the Netherlands where everything

is flat, and I used a bicycle to get around. Further I lived up at least three

flights of stairs. And I weighed a little bit too much.

Now, after a year of intense yoga training with a personal trainer twice a week,

I can definitively say that in fact you do get weakness from overwork.

Why? Even given the fantastic advances that I have made in reversing CMT

symptoms, from vastly improved, or should I say major league return of manual

dexterity, reversal of the hump of kyphosis by strengthening back muscles.

I've lost 35 pounds and reshape my body, bringing my weight to 170.

My fingers and toes are now straighter, and I'm able actually now to drum my

toes. This was very surprising to both me and my yoga trainer.

However, there are still large groups of muscles in my legs which I simply

cannot talk to. No matter the amount of work and the amount of increase in

ability that I just described to you, these sets of muscles are not developing,

and things like long-distance walking, say over 500 yards, is still extremely

difficult and I need a power chair to do that.

Now why oh why is it so?

I find this study or alleged study to not conform to the way CMT works.

If you can't talk to certain groups of muscles, other groups of muscles have to

take over the work that these muscles do. The fact that the body does this is

named by neurologists and others in the field of rehabilitation as sort of a

miracle that your body provides for you: if you can't do something regular way

it tries other ways of getting it done.

If a given set of muscles is asked to do its job and the job of another set of

muscles, then it's not possible that over work does not emerge.

I love it when people who don't have CMT, even researchers, tell us, given that

we so very often have to educate our own doctors about our condition, that we

are actually wrong about a given thing.

I wonder why I get so tired when I'm just walking around. if I get tired

enough, say like in 1999 after a 12 hour flight from London, I simply can't

stand up and need to be carted off to the hospital. since then I have been

asked by my family to use wheelchair service to get from the aircraft, to

customs, through customs, and then to the baggage claim. In Los Angeles it's not

too difficult to get to the aircraft, but in London, it's at least a mile walk

from the aircraft to the customs and immigration area.

So ask: Other than overwork leading to weakness, how does this situation come

about?

I will come and show anyone that in fact overworked leads to weakness. That is

the essential method of control for people who have CMT. We have to take it

easy, otherwise we will have to pay for it the next day through weakness and

inability to do stuff like walk around the house, or even sometimes get out of

bed.

I'll end with what I started with: wow! high activity levels, particularly if

they are too high, and how severely you are affected determines the point at

which a high activity levels will start to become problematic.

I was told in 1980 when I got my diagnosis that my disease was not progressive,

that it was a syndrome not a disease, and that it was from the knees down and

the elbows down.

This was very definitely not the case: CMT is a slowly progressive disease

which is simply WORSE from the elbow down and from the knee down. CMT1 and CMT-x

share symptoms with multiple sclerosis in the central nervous system.

I know from personal experience, say like living in the German Alps and riding

mountain bikes after work in order to, " exercise. " Or riding around the city of

Amsterdam in order to get exercises even though the job I was working at was

actually killing me because I was doing too much.

in fact almost everything is too much. And you will find it out sooner or

later. So do not place a whole lot of stock in this one particular study. You

may end up, like I did in 1997, with severe nervous exhaustion, as that was told

when I was younger that I would just have to work a little harder in order to

keep up... when in fact CMT was going to be quickly progressive and extremely

severe.

And every time I tried to do things particularly in the area of exercise in the

way other people are able to do them I did myself great damage.

Be very careful and do not let this happen to you, even though you are so very

happy to have read this one study which allows you to perhaps do too much.

Very very sincerely,

PS. I know from personal experience

>

> All,

>

> I have often heard Paolo Vinci cited on and in particular his work on

muscle overload leading to weakness.

>

> As mentioned, I am a patient with the National Hospital for Neurology in the

UK and a participant in the CMT exercise physiology research studies ongoing. I

have a confirmed diagnosis of CMT1A - and am a very active individual constantly

seeking to redefine and understand my personal limits. Therefore, Vinci's

hypothesis fascinated me. I discussed it with the research team, and was

pointed to the following study by van Pomeren (et al) which I attached in the

folder " Exercise and CMT "

>

> no overwork weakness_pomeren2007.pdf

> Muscle Overwork Weakness in CMT patients - van Pomeren et al (2009)

>

> The researchers disproved Vinci's study. This is good news for people like

me, who are concerned and interested in making sure that high activities levels

do not put them at risk of deterioration.

>

> I also asked the research team if there was any link at all between the muscle

strengthening process - which stresses muscle cells to rebuild them stronger -

and the idea that nerves can be damaged in this process. They indicated to me

there was no physiological link between muscle strengthening and any nerve cell

damage.

>

> I found both of these points to be music to my ears and wanted to share with

you all.

>

> I will continue to post any updates to my questions that I think may be of

interest to the wider group.

>

> Best wishes from London,

> Donna

>

> www.myfitnessyear.com

> http://blog.myfitnessyear.com

>

[Guest guest]

Donna,

What I got from reading this is that it was a study predominantly on strength in

CMT hands, not the entire body, although there is mention at the end about lower

extremities. Different scales were used and a smaller number of persons were

inrolled in the research. I realize that 's previous research showed

similiar results in hand grip and pinch strength, but only 53 people were

tested.

You may be interested in Chetlin's study from 2004 (I think it is our Files

somewhere) RD, Gutmann L, Tarnopolsky M, Ullrich IH, Yeater RA.

Resistance training effectiveness in patients with Charcot-Marie-

Tooth disease: recommendations for exercise prescription. Arch

Phys Med Rehabil 2004; 85: 1217–1223.

In my own life's experience, I have remained active to this day, and without

deterioration of strength. But I am only one. And my exercises patterns are

consistent with 3 - 4 days of maximum of 1 hour. Of course, I am not an athelete

as you are in training. My exercise is really for pure enjoyment, not

necessarily to build muscle, but just to stay in shape, be thin, but be as

strong as I can be.

In CMT 1A, the myelin (wrapping around the nerves " becomes frayed and therefore

signals from the nerves to muscles are slowed. This alone can cause overwork

fatigue. CMT is a slowly progressive disease, but I do believe exercise can be

of benefit, not only physically, but emotionally as well.

I would still caution people starting an exercise program, or those already in

one to take it easy and pace out the activity. Daily life, as we have found, can

be enough for some, without such ramped up exercise. We are all different, even

with the same type. And as any person ages (meaning non-CMT affected persons)

muscle strength can diminish.

Thanks for sharing Van P's results and keeping us informed. I hope to see more

studies with a greater number of participants with CMT. If you ever decide to

try the L.A. marathon, let me know. I'll be there to cheer you on!

Gretchen

> I also asked the research team if there was any link at all between the muscle

strengthening process - which stresses muscle cells to rebuild them stronger -

and the idea that nerves can be damaged in this process. They indicated to me

there was no physiological link between muscle strengthening and any nerve cell

damage.

>

> I found both of these points to be music to my ears and wanted to share with

you all.

>

> I will continue to post any updates to my questions that I think may be of

interest to the wider group.

>

> Best wishes from London,

> Donna

>

> www.myfitnessyear.com

> http://blog.myfitnessyear.com

>

[Guest guest]

Hi Donna,

 

Thank you for sharing this study.  It is good to know that we don't need to be

afraid that everyday activities that we feel we can safely do might be secretly

causing us damage of some kind.

 

I do have a question for your researchers on a related matter.

 

My neurologist has instructed me not to lift weights with my hands or lower legs

due to lack of muscle mass.  He said that the strain of this weight could damage

the fragile nerve endings, since there isn't enough muscle to protect them.

 

If this is true, then we would still need to be careful to only do

activities where there is enough muscle/structural strength to adequately

support the body and protect the nerves, correct?  Otherwise, we could hasten

our decline.

 

If you could ask them, that would be great.

 

Thanks,

[Guest guest]

Thanks for the responses - I'm glad my post provoked reading and thought!

The first caveat I would like to make is that, as Gretchen says, never do

anything new without feeling you have complete medical support - this includes

embarking on an exercise program. This is true for " normal " people introducing

exercise as well as for CMT folks. I do not do anything without thorough

engagement with experts - in my own journey I am a research participant, I have

constant contact with my medical team at the UK's Institute of Neurology, I have

on side a nutritionist, a certified coach, a sports therapist and countless

others. It is very important for everyone to be informed - this site is a great

resource, but I would never advocate that people embark on physical activity

without proper guidance and support. Especially if you are starting something

new, or coming from a relatively inactive base (both of which I have done since

2003)...

I am just trying to throw out an alternative to the regularly cited Vinci study.

I promised I would do this. I have great medical support and they share

information with me such as this that I might find of interest, especially as

relates to exercise given my interest in being strong and at a high level from

which I can deteriorate should that time arrive.

I am surprised that my sharing of information elicited such passion - but at the

same time I am happy to be a part of a group that has passion.

Now, onto specifically responding to some email comments:

Gretchen - yes, this study was a re-do of Vinci's study, which was done using

dominant hand strength to establish if overuse caused weakness. So you are

right - it is not whole body. Van Pomeren and team sought to re-do with

alternative controlled analytics to see if Vinci's theory held true. The

conclusion was (from my interpretation) that the overuse -weakness link was not

conclusive, and therefore use of muscles should not be restricted or limited in

patients with CMT.

There is a distinct difference between " overwork fatigue " and " overwork

weakness " which I understand to be a deterioration in muscle function. There is

not a clear deterioration of muscle function caused by overwork. I do not

dispute that due to nerve damage we get " overwork fatigue " - I get this, and

have to pay a lot of attention to my body and my recovery times and ensure that

I get the rest that I need. This means, for me, that I have two scheduled full

days off in training a week, that I plan for afternoon naps on the weekends

(after full mornings of training and social lunches), I sleep very early (most

triathlon people do though - so this is not too unusual), and when I feel

totally spent I cancel training days. I don't want to burn out or get fatigue.

- I will surely ask the team. I am asking them a few questions this

evening (I get a house visit tonight - how cool is that?) including the point

Holli made about fasciculations (muscle twitching) being a sign or precursor of

nerve deterioration / nerve death / muscle atrophy. I will ask if lifting

weights without muscle mass can damage nerve endings.

- thanks for sharing your personal experiences.

I am not sure if you misunderstood the purpose of my post - it was in response

to the citation of Vinci as a reason not to overuse our muscles. Nerve related

fatigue is real, and different from muscle overwork weakness, which relates

solely and specifically to muscle deterioration with use (and not nerves). I

think the overwork you are experiencing is nerve related fatigue. I was not

addressing fatigue by sharing the study. And it is a study, not an " alleged

study " by highly respected researchers who specialise in the field of CMT.

Please do not assume that " I will learn sooner or later " ... Everyone is impacted

differently by CMT. Zahn took bronze in Beijing in the cycling time

trials - he has CMT. Others on this site have posted that they go on cycling

holidays and are very active. Others are in wheelchairs and suffer immensely.

We all express our CMT differently.

And to everyone: All I seek to do is to be as strong as I can for as long as I

can, to support efforts to find a treatment for CMT, and to be positive for

others who also seek to be active or to have active children. Please keep

divisive negativity or dismissive comments off posts, this is supposed to be a

positive sharing community.

If you would like to read more about my positive approach to managing my CMT,

and my journey, please feel free to click onto my site and to leave comments on

my blog.

With best wishes,

Donna from London

www.myfitnessyear.com

blog: http://blog.myfitnessyear.com

[Guest guest]

My legs today belie the English findings -- but this is just anecdotal. I spent

the last two days " attending to Stuff " around Rome. For me Around Rome requires

buses, trams, and the Metro(subway). Today I am beat.

Then again maybe there is some analgesic effect when sitting on a crammed (read

CRAMMED) bus with an armpit that hasn't felt either soap or a deodorant since

Italy won the World Cup in 2006 extended over my head while hanging on to the

bars...

I do have a view on fatigue that I will share when it finally gels and I can

write it in such a way to offend no more that half the readers.

Regards.

--Larry