Fatigue

[Guest guest]

Shirley,

Glad your able to rest today. I am just doing a little housework. I

have taken my pain meds, and rubbed on some gel the doc prescribed

for me, so I'm alright. I decided to take 10mg of Prednisone, until

I can start Humira next week. I'm hoping when I inject the Humira,it

will start working quickly.

Take care, and hope you feel better, Tawny

PS:I will see my granddaughter on Wed. She is gorgeus! I have a doc

appointment tomorrow, and my youngest daughter has one on Tuesday, so

starting the week busy:( I hate early appointments,

>

> Tawny,

> Thanks, Sweetie. I was going to try and attend a funeral but going

> yesterday just did me in, so I have only rested today.

> I hope you are having a good day also. Did you get to see that

> beautiful grandbaby? She is just a doll.

> Shirley

>

>

>

[Guest guest]

In a message dated 2/1/2009 10:32:31 A.M. Central Standard Time,

stanpfister@... writes:

I am having a lot of trouble with the fatigue factor, my Rheumatologist

claims it has nothing to do with the MTX, it's me. But everywhere I look people

complain about fatique. Not sure what to do, vitamins?

Before I was diagnosed, my fatigue was incredible. Through treatment, I have

had some periods without fatigue. A few weeks ago, I was on an antibiotic

and stopped taking Mtx for two weeks. The fatigue actually got worse.

I think I heard that the inflammation causes fatigue.

I have it today. And I was disappointed with my Rhu's response to fatigue.

He compared it to being tired -- like from not getting enough sleep. It's not

like that at all. It's like I'm getting the flu -- I even get a little nausea

with it.

So I spend a lot of time laying down. I have a laptop in bed. I go to work

and then go to bed.

Today I will go to a Super Bowl party. There's usually a lot of standing at

these parties and that is very hard on me. Walking is easier than standing. If

I get too fatigued, I will come home. It's not like I actually watch the

game there and we have a better tv at home. I go for the socialization.

dd

**************Great Deals on Dell Laptops. Starting at $499.

(http://pr.atwola.com/promoclk/100000075x1217883258x1201191827/aol?redir=http://\

www.dell.com/co

ntent/products/features.aspx/laptops_great_deals & #63;c=us%26cs=19%26l=en%26s=d

hs%26 & #126;ck=anavml)

[Guest guest]

In a message dated 2/1/2009 12:39:19 P.M. Central Standard Time,

hmendelsohn@... writes:

Do you have Fibro as well as RA? Both can cause fatigue. I have both so its

hard for the Dr to rtell which is flaring. But I do get tired after I take

the MTX injection and feel pretty crappy for a day or so.

Heidibug >>

Well, I don't have the Dx of Fibro. Just RA. I take 4 Mtx pills on Monday. I

started with six, but I felt icky for too long. I also am on 5 mg of

Prednisone and get Remicade every 8 weeks. Oh and I'm dealing with slightly

hyperthyroid. And Crohn's, which is supposed to be in remission, but some

symptoms

got better with the Remicade. And I'm 30 pounds overweight. At least I didn't

gain anything when on the higher doses of Prednisone. I was diagnosed less

than a year ago at the age of 64.

dd

**************Great Deals on Dell Laptops. Starting at $499.

(http://pr.atwola.com/promoclk/100000075x1217883258x1201191827/aol?redir=http://\

www.dell.com/co

ntent/products/features.aspx/laptops_great_deals & #63;c=us%26cs=19%26l=en%26s=d

hs%26 & #126;ck=anavml)

[Guest guest]

DD

Do you have Fibro as well as RA? Both can cause fatigue. I have both so its

hard for the Dr to rtell which is flaring. But I do get tired after I take

the MTX injection and feel pretty crappy for a day or so.

Heidibug

On Sun, Feb 1, 2009 at 12:50 PM, <dgd301@...> wrote:

>

> In a message dated 2/1/2009 10:32:31 A.M. Central Standard Time,

> stanpfister@... <stanpfister%40comcast.net> writes:

>

> I am having a lot of trouble with the fatigue factor, my Rheumatologist

> claims it has nothing to do with the MTX, it's me. But everywhere I look

> people

> complain about fatique. Not sure what to do, vitamins?

>

> Before I was diagnosed, my fatigue was incredible. Through treatment, I

> have

> had some periods without fatigue. A few weeks ago, I was on an antibiotic

> and stopped taking Mtx for two weeks. The fatigue actually got worse.

>

> I think I heard that the inflammation causes fatigue.

>

> I have it today. And I was disappointed with my Rhu's response to fatigue.

> He compared it to being tired -- like from not getting enough sleep. It's

> not

> like that at all. It's like I'm getting the flu -- I even get a little

> nausea

> with it.

>

> So I spend a lot of time laying down. I have a laptop in bed. I go to work

> and then go to bed.

>

> Today I will go to a Super Bowl party. There's usually a lot of standing at

>

> these parties and that is very hard on me. Walking is easier than standing.

> If

> I get too fatigued, I will come home. It's not like I actually watch the

> game there and we have a better tv at home. I go for the socialization.

>

> dd

> **************Great Deals on Dell Laptops. Starting at $499.

> (

>

http://pr.atwola.com/promoclk/100000075x1217883258x1201191827/aol?redir=http://w\

ww.dell.com/co

>

> ntent/products/features.aspx/laptops_great_deals & #63;c=us%26cs=19%26l=en%26s=d

> hs%26 & #126;ck=anavml)

>

>

[Guest guest]

I only have RA, but I am really getting sick of feeling crappy all the time, I

know how you feel. I expected to be more " normal " with treatment but I settle

for pain free days, even that doesn't happen all the time. The MTX make for a

bad day for sure, Then I have to battle all week to get something done and feel

somewhat normal.

Stan

Seattle, Sun breaks.

-------------- Original message --------------

From: Heidi Mendelsohn <hmendelsohn@...>

DD

Do you have Fibro as well as RA? Both can cause fatigue. I have both so its

hard for the Dr to rtell which is flaring. But I do get tired after I take

the MTX injection and feel pretty crappy for a day or so.

Heidibug

On Sun, Feb 1, 2009 at 12:50 PM, <dgd301@...> wrote:

>

> In a message dated 2/1/2009 10:32:31 A.M. Central Standard Time,

> stanpfister@... <stanpfister%40comcast.net> writes:

>

> I am having a lot of trouble with the fatigue factor, my Rheumatologist

> claims it has nothing to do with the MTX, it's me. But everywhere I look

> people

> complain about fatique. Not sure what to do, vitamins?

>

> Before I was diagnosed, my fatigue was incredible. Through treatment, I

> have

> had some periods without fatigue. A few weeks ago, I was on an antibiotic

> and stopped taking Mtx for two weeks. The fatigue actually got worse.

>

> I think I heard that the inflammation causes fatigue.

>

> I have it today. And I was disappointed with my Rhu's response to fatigue.

> He compared it to being tired -- like from not getting enough sleep. It's

> not

> like that at all. It's like I'm getting the flu -- I even get a little

> nausea

> with it.

>

> So I spend a lot of time laying down. I have a laptop in bed. I go to work

> and then go to bed.

>

> Today I will go to a Super Bowl party. There's usually a lot of standing at

>

> these parties and that is very hard on me. Walking is easier than standing.

> If

> I get too fatigued, I will come home. It's not like I actually watch the

> game there and we have a better tv at home. I go for the socialization.

>

> dd

> **************Great Deals on Dell Laptops. Starting at $499.

> (

>

http://pr.atwola.com/promoclk/100000075x1217883258x1201191827/aol?redir=http://w\

ww.dell.com/co

>

> ntent/products/features.aspx/laptops_great_deals & #63;c=us%26cs=19%26l=en%26s=d

> hs%26 & #126;ck=anavml)

>

>

[Guest guest]

The whole thing is kind of weird. I have the energy to come up with all the

things I want to, but don't have the energy to carry through on those ideas. I

feel trapped. When you get a period of feeling " normal " then I usually over do

it and end up right back in the same position.

Stan,

Seattle, Cloudy.

-------------- Original message --------------

From: dgd301@...

In a message dated 2/1/2009 10:32:31 A.M. Central Standard Time,

stanpfister@... writes:

I am having a lot of trouble with the fatigue factor, my Rheumatologist

claims it has nothing to do with the MTX, it's me. But everywhere I look people

complain about fatique. Not sure what to do, vitamins?

Before I was diagnosed, my fatigue was incredible. Through treatment, I have

had some periods without fatigue. A few weeks ago, I was on an antibiotic

and stopped taking Mtx for two weeks. The fatigue actually got worse.

I think I heard that the inflammation causes fatigue.

I have it today. And I was disappointed with my Rhu's response to fatigue.

He compared it to being tired -- like from not getting enough sleep. It's not

like that at all. It's like I'm getting the flu -- I even get a little nausea

with it.

So I spend a lot of time laying down. I have a laptop in bed. I go to work

and then go to bed.

Today I will go to a Super Bowl party. There's usually a lot of standing at

these parties and that is very hard on me. Walking is easier than standing. If

I get too fatigued, I will come home. It's not like I actually watch the

game there and we have a better tv at home. I go for the socialization.

dd

**************Great Deals on Dell Laptops. Starting at $499.

(http://pr.atwola.com/promoclk/100000075x1217883258x1201191827/aol?redir=http://\

www.dell.com/co

ntent/products/features.aspx/laptops_great_deals & #63;c=us%26cs=19%26l=en%26s=d

hs%26 & #126;ck=anavml)

[Guest guest]

I call that the 2 day phenomenon... One REALLY GOOD day and then 2-3 sucky ones

afterwards!

I must say I am surprised how good I am feeling on Arava.... Is it working? I

dunno since I am still on a small dosage of Prednisone however I dont feel like

a bitch royale on this medication like I did MTX and I actually have energy....

somwhat!

****~**** Kami ****~****

Re: [ ] Fatigue

The whole thing is kind of weird. I have the energy to come up with all the

things I want to, but don't have the energy to carry through on those ideas. I

feel trapped. When you get a period of feeling " normal " then I usually over do

it and end up right back in the same position.

Stan,

Seattle, Cloudy.

.

[Guest guest]

Hi,

Fatigue is my worst problem with RA. Although I have had to have

surgery on both my hand and my knee, the fatigue has stopped many

parts of my life much more. My rheumatologist seems to understand this

but my long term disability insurance company does not!

Be gentle with yourself and know that there really will be better days!

Pat

[Guest guest]

I'd like to know what people's experiences are with fatigue. Everything I read

about CMT seems to indicate that fatigue is a very common symptom that about

everyone with CMT experiences to some degree. But then I go to the neurologist

and they all act like I must not be exercising enough or something. Physically,

my CMT symptoms are rather mild although some in my family have it quite severe.

I am a fairly active person, at least for as long as my stamina lasts. I try to

ride bike about 20 miles once a week. I am middle aged but am still able to run

even if it isn't very fast. I'm able to play informal games of softball and can

usually hold my own although lately I've been finding myself getting a bit more

clumsy with handling the ball. I try to eat healthy and I think that has helped

to keep the symptoms at bay.

My biggest problem is with fatigue. I don't have a lot of stamina to just keep

going. For example, If I'm doing something that requires a moderate amount of

physical activity like painting where I'm going up & down ladders or a bike ride

where I'm not pushing myself hard I might be good for about 2 hours before my

stamina is gone and I probably will need to go sleep.

If I'm doing a job that is mostly sedentary then I might be good for maybe 5 or

6 hours before I start feeling wiped out. One therapist I had said that I need

to learn to pace myself and that if I do too much one day then the next day my

body will need to recuperate.

Because of the CMT my body is working overtime at trying to get the energy

through. But the neurologists never seem to want to admit this. It's like I

must not be getting enough exercise or something. So I just want to know what

everyone else's experience is with fatigue & CMT.

[Guest guest]

Although not officially considered a symptom, I definitely have fatigue issues.

Some users have reported positive results with Provigil, personally, I can't

afford it and it made me more jittery than energized. At this point fatigue is

my #1 symptom and is making work more and more of a challenge.

Re: fatigue

I'd like to know what people's experiences are with fatigue. Everything I read

about CMT seems to indicate that fatigue is a very common symptom that about

everyone with CMT experiences to some degree. But then I go to the neurologist

and they all act like I must not be exercising enough or something. Physically,

my CMT symptoms are rather mild although some in my family have it quite severe.

I am a fairly active person, at least for as long as my stamina lasts. I try to

ride bike about 20 miles once a week. I am middle aged but am still able to run

even if it isn't very fast. I'm able to play informal games of softball and can

usually hold my own although lately I've been finding myself getting a bit more

clumsy with handling the ball. I try to eat healthy and I think that has helped

to keep the symptoms at bay.

My biggest problem is with fatigue. I don't have a lot of stamina to just keep

going. For example, If I'm doing something that requires a moderate amount of

physical activity like painting where I'm going up & down ladders or a bike ride

where I'm not pushing myself hard I might be good for about 2 hours before my

stamina is gone and I probably will need to go sleep.

If I'm doing a job that is mostly sedentary then I might be good for maybe 5

or 6 hours before I start feeling wiped out. One therapist I had said that I

need to learn to pace myself and that if I do too much one day then the next day

my body will need to recuperate.

Because of the CMT my body is working overtime at trying to get the energy

through. But the neurologists never seem to want to admit this. It's like I must

not be getting enough exercise or something. So I just want to know what

everyone else's experience is with fatigue & CMT.

[Guest guest]

Hi,

My CMT is worse than yours, but of course there is fatigue involved! I try to

compensate by taking time-outs. I don't need to sleep, but I sure need to rest.

Usually I am totally inactive after 9 pm. I work, take care of my home and

child, and then I have two hours of rest, reading or watching TV, before I go to

bed. The most important thing for me is: I don't move. Rest must be totally

sedetary, sitting or lying down, NO activities. I think this is my energy saving

strategy, and it helps me to be able to do everything I must during daytime.

Sometimes I also need time-outs during the weekend, rest for a couple of hours.

But I also think it is an individual thing, some need more rest, some less. Your

doctor is wrong when he says that your fatigue is due to lack of exercise. If he

could  " try " having CMT for just one day, I am sure he would change his mind

about that statement!

Beata   

[Guest guest]

_Click here: Wheat Germ Oil E_

(http://www.doctorsresearch.com/prod_wheat.html)

Might be worth a try

[Guest guest]

_Click here: Wheat Germ Oil_

(http://www.nutritiongeeks.com/wheat-germ-oil-now-12/wheat-germ-oil-now.html)

Better deal

**************Remember Mom this Mother's Day! Find a florist near you now.

(http://yellowpages.aol.com/search?query=florist & ncid=emlcntusyelp00000006)

[Guest guest]

We found out that my sons CMT fatigue, was actually directly related to an

almost non-existence of Vitamin B12 in his system. Apparently that is not at

all uncommon in CMTers. The neurologist now has him on 1000mg sublingual pills

every day and his stamina is much improved as the B12 levels have risen. They

still aren't normal but there has been good elevation of the level. Have you

had your B12 level checked?

Just a thought.

[Guest guest]

I don't have fatigue, other than being generally tired after a normally packed

day like the rest of the world. However, with CMT I have had to learn to pace

myself, in work, in leisure, biking, swimming/aquatics, etc. This is because CMT

muscles have to work twice as hard as non-CMT muscles to do 1/2 the work. My CMT

is still mild.

I had to become more aware of my body rythyms and learn what my best hours are

for best output/input/rest/relaxation/fun This took many hours of organization

and discipline, but anyone can do this. This was not accommplished and is

ongoing if a new situation is presented.

However, in high school, I had extreme fatigue - I was finished for the day at 2

pm - 2 hours before my peers. I either went home to rest, or I went to work -

that change envigorated me until 5 pm. I slowly started to adapt my life into a

series of rest periods, work periods, study periods, activity periods that best

suited me and this has only been more refined and developed over the years.

One other time in my life I was hit with severe fatigue - when I moved to a

6,000 ft above sea level city. I thought it was CMT getting worse - not

remembering that CMT is slowly progressive. That fatigue I experienced at a

higher altitude was due exactly to that - altitude adjustment due to less oxygen

higher up. After 3 months or so, that was all gone, and I was back to my high

energy self.

About your exercise, regarding 20 mile biking - sure you can do it, but an

example of " pacing " that out would be to ride 5 miles 4 times a week. You may

even find your endurance gets better from that change. Plus regular frequent

exercise is healthier on the heart. You can add weight to your bike for

resistance too and still bike for 5 miles, getting good benefit.

As for neurologists, some say exercise, some say don't. In the CMT community,

experts suggest that regular, mild exercise can be beneficial. (swimming,

biking)

Please use caution on the ladders. Balance when fatigued is a killer. Just

trying to balance properly is fatiguing in itself.

Please read the info in our Files folder titled " Fatigue " . Also visit our

Message Archives (2257 posts) on this subject of exercise.

Gretchen

[Guest guest]

Another medical issue you may want to rule out is sleep apnea. Current

research (Dr. Mike Shy) has shown that sleep apnea is directly related

to CMT, which can cause daytime drowsiness and fatigue. My son was

diagnosed with sleep apnea after having a sleep study performed. He

cannot tolerate the CPAP mask, and hopefully, scientists are working on

different ways to treat those with sleep disorders. Provigil gets him

through the day. Before the sleep study, we could not understand why he

was falling asleep in class and unable to do anything but go to school,

come home and rest. At least now, he can enjoy his high school

experience and have the energy to socialize, do his homework and go on

outings over the weekend.

Hope this helps!

[Guest guest]

I, too, am feeling significant fatigue.

I find I have to take a long time resting (like a day or more) if I have a full

day. My doctors don't acknowledge it as part of CMT either!

Jim

[Guest guest]

Fatigue is a problem for me, too, because I just don't want to slow down! I

know I should stop and rest at times, but I never do unless I am really forced,

too.

Has any one else suffered from fatigue when it is extremely humid and warm?

Here in southern California our weather is almost perfect so that is usually not

a problem, BUT when I am home visiting family in Austin, the humidity stops me

dead in my tracks! Yuck! My legs immediately feel " nauseated " . Now that

sounds weird BUT it is a very weird feeling. I have tried to describe to

doctors the feeling and the best I can come up with is to describe them as

feeling nauseated!

Karon

[Guest guest]

Fatigue, oh yes......

 

By the end of the working week and I'm bushwacked. And that's with an office job

where my desk is in the middle of the office and handy for most things.  Some

days it's all I can do to walk out of the office.

 

I've learned though, that outside work, it's a little at a time, do a chore and

rest, do something else and rest. Take plenty of time for everything and above

all don't get stressed. Learn your limitations; if you have the energy continue

your sport or whatever you enjoy but appreciate that your body just won't bounce

back the way it used to (if it ever did!)

 

Sounds boring or frustrating? Thats the way things are.....in my experience

anyway!

 

Fiona from Glasgow

 

 

 

 

 

[Guest guest]

CMT and Fatigue: Why are we so tired?

by Greg , M.D., Medical Director, Providence

Rehabilitation Hospital, Chehalis, WA, U.S.A.

Skeletal muscle weakness and loss of sensation are the ultimate

causes of the majority of clinical problems associated with CMT.

Fatigue in CMT is likely multifactorial and due, in part, to impaired muscular

activation. Other contributing factors include generalized deconditioning from

immobility and imposed sedentary lifestyle. Besides diffuse muscle weakness,

atrophy and fatigue, there is also a reduced functional exercise capacity.

Although these are common problems in CMT they have not been well quantified. We

did one limited study about 10 years ago. We took 12 adult subjects with CMT

type I, and 10 subjects without CMT and measured pulmonary (breathing) function,

including tidal volume (VT), respiratory rate (RR), minute ventilation (Ve),

oxygen uptake (VO2), oxygen saturation (SaO2), carbon dioxide production

(VCO2), inspiratory flow (VT/Vi), and heart rate (HR). We then administered the

Lee Fatigue Scale, the Lareau Functional Status Scale, Borg Perceived Exertion

Scale, and the Profile of Mood States (POMS) measured before and after

unsupported arm exercise (UAE). Results showed fatigue was moderate to severe

and functional state was reduced compared to subjects without CMT. This was true

both before and after exercise, with significant increases in fatigue reported

post exercise. Our findings indicated that people with CMT have elevated fatigue

intensity and distress before and after exercise. Functional state is also much

lower in CMT.

Pain, and occasionally, depression, can also contribute to fatigue or

the sense thereof. Some reactive clinical depression is expected in

CMT if there is significant loss of function. Good family, social, and

religious support systems are helpful in this regard. Anti-depressant medicine

should be considered since it may provide assistance with energy levels,

mood-elevation, appetite stimulation and sleep. Aerobic exercise not only

improves physical functioning but is beneficial in fighting depression and

improving pain tolerance, two things that are critical in CMT. There have been

few well-controlled studies looking at exercise induced strength gains in CMT.

My colleague Dr. Dave Kilmer had CMT subjects do a 12 week moderate resistance

(30% of maximum isometric force) exercise program which resulted in strength

gains ranging from 4% to 20% without any notable deleterious effects. However,

in the same population, a 12 week high resistance (training at the maximum

weight a subject could lift 12 times) exercise program showed no further added

beneficial effect compared to the moderate resistance program and there was

evidence of overwork weakness in some of the subjects. The risk for overwork

weakness is great in CMT and exercise should be prescribed cautiously and with a

common sense approach. People with CMT should be advised not to exercise to

exhaustion, which can produce more muscle damage and dysfunction. The warning

signs of overwork weakness include feeling weaker rather than stronger within 30

minutes post exercise or excessive muscle soreness 24-48 hours following

exercise. Other warning signs include severe muscle cramping, heaviness in the

extremities, and prolonged shortness of breath. Nonetheless, gentle, low impact

aerobic exercise like walking, swimming, and stationary bicycling will improve

cardiovascular performance and increase muscle efficiency, and thus help fight

fatigue.

Up until a few years ago, pain was not frequently characterized as a major

component of CMT. However a study sponsored, and funded in part by CMT

International, showed that the majority of people with CMT do experience

significant pain. The pain is due largely to damaged nerves causing " neuropathic

pain " (stinging, burning). However, immobility, which can cause adhesive

capsulitis, mechanical back pain, and pressure areas on the skin also likely

contribute. Chronic pain can be immensely fatiguing and it would be helpful for

those with chronic pain to have it treated aggressively.

Pharmacological management of pain in CMT includes the use of

non-steroidal anti-inflammatory (NSAID) medication, particularly if there is

evidence of active inflammatory process like tenosynovitis or arthritis. Regular

dosing of acetaminophen (1000 mg every 6 hours) may be used along with an NSAID

or alone if NSAIDs are not tolerated. Anti-depressants and anti-convulsants

(neurontin) are particularly helpful for neuropathic pain. Narcotic medicine

should also be considered for refractory pain. If narcotics have helped, then

taking the total dose of immediate release (short acting) narcotic required to

alleviate pain and giving half of that every 12 hours in a controlled-release

preparation such as OxyContin may be helpful.

Proper equipment is crucial to maintaining energy. Braces

(ankle-foot orthoses, etc) should fit well and be in good repair.

Wheelchairs should have adequate lumbar support and good

cushioning (gel-foam). The chair should be properly fitted (generally done by

occupational therapist) to avoid pressure ulcers and inadequate support for the

spine. Wheeled walkers (Gran Tour in particular) or quad (four point) canes may

also help, depending on the pattern of weakness. Some may benefit from Canadian

style

forearm crutches to steady them. Other useful equipment includes

hand-held showers, bathtub benches, to shower and toilet grab bars

(Versa frame), raised toilet seat, automatic toileting device, hospital bed,

commode chair, ADL aids (sock aid, grabbers, etc), and wheelchair ramps. An

occupational therapist will help define which, if any, of these devices will be

useful to the patient. They can also go over pacing and energy conservation

techniques.

Respiratory failure occasionally will develop in CMT, due to

weakness of the diaphragm, chest wall, and abdominal musculature. This is

usually manifested by hypoventilation, which leads to elevated carbon dioxide

levels in the blood. This will cause fatigue. A thorough review of systems by

your physician will help define any problems. Patients that are hypoventilating

will often complain of a morning headache, restlessness or nightmares, and poor

quality sleep. This may cause daytime somnolence and fatigue. Dr. Bach has

shown significant success with the use of intermittent positive pressure

ventilation by mouth (IPPV). This type of ventilation does not require a

tracheostomy and may markedly improve quality of life. IPPV can be done easily

in the home and should be considered in people with CMT and respiratory failure

or sleep apnea. Patients may benefit initially from using IPPV mainly at night.

(See also under the heading Breathing)

Both grief and depression can cause fatigue. Grief counselling can often help

get you back to a full happy life.

Stress can also make you very tired. Living with constant stress from family,

stress in the workplace or just pressure to perform beyond your limits (like

working two jobs) can take its toll. Constantly pushing ourselves to perform

every day can mean that our bodies are always exhausted. Being exhausted all the

time means we never give our nerves time to try to repair themselves and our

muscles will atrophy as we push ourselves. Over time a pattern of prolonged

abuse and overuse can see muscles permanently atrophied although they can

atrophy with normal use as well. Nervous exhaustion can also take place. Some

of us have

exceptionally low tolerances to noise and odor, taste and touch as

well as chemicals. Knowing what you cannot tolerate and avoiding it as much as

possible will help you stay on an even keel. Knowing

what makes you tired and learning to pace yourself is the key to

living with CMT.

[Guest guest]

Clinical neurophysiology of fatigue.

Clin Neurophysiol. 2008 Jan;119(1):2-10.

Zwarts MJ, Bleijenberg G, van Engelen BG.

University Medical Centre Nijmegen, Institute of Neurology, 920

Department of Clinical Neurophysiology, PO Box 9101, 6500 HB

Nijmegen, The Netherlands.

Fatigue is a multidimensional concept covering both physiological and

psychological aspects. Chronic fatigue is a typical symptom of

diseases such as cancer, multiple sclerosis (MS), Parkinson's disease

(PD) and cerebrovascular disorders but is also presented by people in

whom no defined somatic disease has been established. If certain

criteria are met, chronic fatigue syndrome can be diagnosed. The 4-

item Abbreviated Fatigue Questionnaire allows the extent of the

experienced fatigue to be assessed with a high degree of reliability

and validity.

Physiological fatigue has been well defined and originates in both

the peripheral and central nervous system. The condition can be

assessed by combining force and surface-EMG measurements (including

frequency analyses and muscle-fibre conduction estimations), twitch

interpolation, magnetic stimulation of the motor cortex and analysis

of changes in the readiness potential. Fatigue is a well-known

phenomenon in both central and peripheral neurological disorders.

Examples of the former conditions are multiple sclerosis, Parkinson's

disease and stroke. Although it seems to be a universal symptom of

many brain disorders, the unique characteristics of the concomitant

fatigue also point to a specific relationship with several of these

syndromes.

As regards neuromuscular disorders, fatigue has been reported in

patients with post-polio syndrome, myasthenia gravis, Guillain-Barre

syndrome, facioscapulohumeral dystrophy, myotonic dystrophy and

Hereditary Motor and Sensory Neuropathy type-I.(CMT) More than 60% of

all neuromuscular patients suffer from severe fatigue, a prevalence

resembling that of patients with MS.

Except for several rare myopathies with specific metabolic

derangements leading to exercise-induced muscle fatigue, most studies

have not identified a prominent peripheral cause for the fatigue in

this population. In contrast, the central activation of the diseased

neuromuscular system is generally found to be suboptimal. The

reliability of the psychological and clinical neurophysiological

assessment techniques available today allows a multidisciplinary

approach to fatigue in neurological patients, which may contribute to

the elucidation of the pathophysiological mechanisms of chronic

fatigue, with the ultimate goal to develop tailored treatments for

fatigue in neurological patients. The present report discusses the

different manifestations of fatigue and the available tools to assess

peripheral and central fatigue.

[Guest guest]

CHRONIC FATIGUE IS one symptom of CMT.

• It Is Both Psychological and Physical.

• Therefore it tends to be non-specific.

• It has a " vague " characteristic which makes it difficult to accept.

• Lack of understanding has generated a negative attitude to any type of over -

fatigue

• Recently due to its high incidence, stemming from other illnesses, the

social impact of this condition/symptom has been acknowledged.

• WHAT CAUSES CHRONIC FATIGUE ?

• Disease/Injury/Anxiety/Stress/ Depression/ Medications/Overworked muscles

• All areas of one's lifestyle can be affected. (hygiene, work/school, leisure

interpersonal relationships, life roles. Therefore it can affect your ability to

feel that one contributes to society in all of the above areas.

• WHAT IS CHRONIC FATIGUE ?

• Deep tiredness and exhaustion.

• Affects physical capability.

• Affects mental agility.

• Results in lethargy, poor concentration, reduced motivation, poor ability to

solve problems, general disinterest in life.

• HOW TO MANAGE FATIGUE WISELY:

• SELF-MANAGEMENT IS THE KEY: The approach used to cope with fatigue is a

process of self management. The basic premise is that thoughts, feelings and

actions are linked, and that if any of these are altered by circumstances then

the way in which we deal with problems like chronic fatigue is affected.

• IN THIS APPROACH THERE IS A NEED FOR ONE TO: Recognize

negative emotions. ( Fear, Hopelessness, Worthlessness and Despair ) Make the

connection between negative emotions and negative thoughts. i.e. feeling

depressed leads to thoughts of " I can't do this.

See how negative thinking inhibits you from taking action. i.e. " I can't do

this...... " leads you to feel there is no point in trying.

Develop challenges to negative thoughts. " I can't do this..... " is challenged

by " I find it difficult to do this but I will try to do it in small stages. "

Replace negative thoughts with positive ones.

Take control of your life by setting goals and working towards them in small

achievable steps.

Use problem solving to reduce problems to size or find solutions i.e. " I can't

manage all my housework so I will prioritize all the tasks, deal with the most

important ones that I can cope with and ask someone else to do the rest.

Use techniques to manage stress or improve communication with others. It is

difficult to ask for help and tell other people how you feel.

Reward yourself for achievement using

PRACTICAL STEPS TO DEAL WITH FATIGUE MANAGEMENT.

A) Acknowledge and accept how fatigue makes you feel.

Think about the effect this has on your life.

C) Think how feelings and symptoms are linked and acknowledge their effects on

your levels of activity and rest.

D) Build up a daily record of activities. This includes all areas of your life,

including personal care, home care, work, and leisure.

E) Put those activities into four categories:

• Those that I need to do.

• Those that could delegate to someone else.

• Those I could discontinue.

• Those I want to do because I enjoy them.

IT IS IMPORTANT TO HAVE ENOUGH ENERGY TO DO THE THINGS THAT GIVE YOU PLEASURE

!!!

F) Look at the patterns of activities that you have developed over the years

i.e. I must clean the windows ever two weeks. Is this necessary ? Realize the

difficulties (practical or psychological) that you have in delegating tasks to

others, asking for help or in discontinuing particular activities. i.e. you may

feel guilty asking your partner to do more in the house for you. Or you may have

no one that you feel you can ask to help you.

G) Think of ways of re-organizing patterns of activities.

H) Break them down into heavy, moderate and light activities.

I) Spread heavy activities over an extended period of time.

J) Build in rest periods. In managing fatigue it is important to accept that.

balancing rest and activity is the main objective of the exercise.

K) Discourage over activity on days when feeling " good " .

L) Set your own goals-make these small and achievable and build in flexibility.

There are often times when circumstances mean that you would find it difficult

to reach your goals. Allow for this and feel comfortable to stop and try again

another time.

M) Realize the importance of balancing " need to do " activities. PLEASURE AND

ENTHUSIASUM RAISE FATIGUE THRESHOLDS. BOREDOM AND DISSATISFACTION LOWER THEM.

Accept the need to carry-out less tiring activities at the beginning, then as

your exercise tolerance and energy improves, more taxing activities can be

included in your plan.

FATIGUE MANAGEMENT DOES NOT HAPPEN OVER NIGHT. IT IS A STATE OF MIND THAT CAN

TAKE A LONG TIME TO DEVELOP. Practice the present.

[Guest guest]

Gretchen,

 

This is an outstanding article.  It captures many things I feel, but have never

heard any medical professional say before.  

 

I really appreciated the explanation of how to know if muscles are being

overworked, since the available information on this topic has been confusing for

me, as well as the risks of pushing too hard (like at work) for an extended

period of time.

 

I also appreciated the mention of pain as a cause of fatigue as well as the role

sensitivity to sounds, odors, taste & touch can play.

 

Great information.  If every medical professional just understood the

information in this article alone, it would be a huge step forward.

 

Thank you for posting.

 

Where was it published?  What was the date published?  Is there a link that can

be included as reference when printing copies of this article for medical

professionals?  If you could repost with complete bibliography data that would

be great.

 

Thanks again,

 

From: gfijig <gfijig@...>

Subject: Re: fatigue

Date: Sunday, May 10, 2009, 5:26 PM

CMT and Fatigue: Why are we so tired?

by Greg , M.D., Medical Director, Providence

Rehabilitation Hospital, Chehalis, WA, U.S.A.

Skeletal muscle weakness and loss of sensation are the ultimate

causes of the majority of clinical problems associated with CMT.

Fatigue in CMT is likely multifactorial and due, in part, to impaired muscular

activation. Other contributing factors include generalized deconditioning from

immobility and imposed sedentary lifestyle. Besides diffuse muscle weakness,

atrophy and fatigue, there is also a reduced functional exercise capacity.

Although these are common problems in CMT they have not been well quantified. We

did one limited study about 10 years ago. We took 12 adult subjects with CMT

type I, and 10 subjects without CMT and measured pulmonary (breathing) function,

including tidal volume (VT), respiratory rate (RR), minute ventilation (Ve),

oxygen uptake (VO2), oxygen saturation (SaO2), carbon dioxide production (VCO2),

inspiratory flow (VT/Vi), and heart rate (HR). We then administered the Lee

Fatigue Scale, the Lareau Functional Status Scale, Borg Perceived Exertion

Scale, and the Profile of Mood States (POMS) measured before and after

unsupported arm exercise (UAE). Results

showed fatigue was moderate to severe and functional state was reduced compared

to subjects without CMT. This was true both before and after exercise, with

significant increases in fatigue reported post exercise. Our findings indicated

that people with CMT have elevated fatigue intensity and distress before and

after exercise. Functional state is also much lower in CMT.

Pain, and occasionally, depression, can also contribute to fatigue or

the sense thereof. Some reactive clinical depression is expected in

CMT if there is significant loss of function. Good family, social, and religious

support systems are helpful in this regard. Anti-depressant medicine should be

considered since it may provide assistance with energy levels, mood-elevation,

appetite stimulation and sleep. Aerobic exercise not only improves physical

functioning but is beneficial in fighting depression and improving pain

tolerance, two things that are critical in CMT. There have been few

well-controlled studies looking at exercise induced strength gains in CMT. My

colleague Dr. Dave Kilmer had CMT subjects do a 12 week moderate resistance (30%

of maximum isometric force) exercise program which resulted in strength gains

ranging from 4% to 20% without any notable deleterious effects. However, in the

same population, a 12 week high resistance (training at the maximum weight a

subject could lift 12 times) exercise program showed no further added beneficial

effect compared to the moderate

resistance program and there was evidence of overwork weakness in some of the

subjects. The risk for overwork weakness is great in CMT and exercise should be

prescribed cautiously and with a common sense approach. People with CMT should

be advised not to exercise to exhaustion, which can produce more muscle damage

and dysfunction. The warning signs of overwork weakness include feeling weaker

rather than stronger within 30 minutes post exercise or excessive muscle

soreness 24-48 hours following exercise. Other warning signs include severe

muscle cramping, heaviness in the extremities, and prolonged shortness of

breath. Nonetheless, gentle, low impact aerobic exercise like walking, swimming,

and stationary bicycling will improve cardiovascular performance and increase

muscle efficiency, and thus help fight fatigue.

Up until a few years ago, pain was not frequently characterized as a major

component of CMT. However a study sponsored, and funded in part by CMT

International, showed that the majority of people with CMT do experience

significant pain. The pain is due largely to damaged nerves causing " neuropathic

pain " (stinging, burning). However, immobility, which can cause adhesive

capsulitis, mechanical back pain, and pressure areas on the skin also likely

contribute. Chronic pain can be immensely fatiguing and it would be helpful for

those with chronic pain to have it treated aggressively.

Pharmacological management of pain in CMT includes the use of

non-steroidal anti-inflammatory (NSAID) medication, particularly if there is

evidence of active inflammatory process like tenosynovitis or arthritis. Regular

dosing of acetaminophen (1000 mg every 6 hours) may be used along with an NSAID

or alone if NSAIDs are not tolerated. Anti-depressants and anti-convulsants

(neurontin) are particularly helpful for neuropathic pain. Narcotic medicine

should also be considered for refractory pain. If narcotics have helped, then

taking the total dose of immediate release (short acting) narcotic required to

alleviate pain and giving half of that every 12 hours in a controlled-release

preparation such as OxyContin may be helpful.

Proper equipment is crucial to maintaining energy. Braces

(ankle-foot orthoses, etc) should fit well and be in good repair.

Wheelchairs should have adequate lumbar support and good

cushioning (gel-foam). The chair should be properly fitted (generally done by

occupational therapist) to avoid pressure ulcers and inadequate support for the

spine. Wheeled walkers (Gran Tour in particular) or quad (four point) canes may

also help, depending on the pattern of weakness. Some may benefit from Canadian

style

forearm crutches to steady them. Other useful equipment includes

hand-held showers, bathtub benches, to shower and toilet grab bars

(Versa frame), raised toilet seat, automatic toileting device, hospital bed,

commode chair, ADL aids (sock aid, grabbers, etc), and wheelchair ramps. An

occupational therapist will help define which, if any, of these devices will be

useful to the patient. They can also go over pacing and energy conservation

techniques.

Respiratory failure occasionally will develop in CMT, due to

weakness of the diaphragm, chest wall, and abdominal musculature. This is

usually manifested by hypoventilation, which leads to elevated carbon dioxide

levels in the blood. This will cause fatigue. A thorough review of systems by

your physician will help define any problems. Patients that are hypoventilating

will often complain of a morning headache, restlessness or nightmares, and poor

quality sleep. This may cause daytime somnolence and fatigue. Dr. Bach has

shown significant success with the use of intermittent positive pressure

ventilation by mouth (IPPV). This type of ventilation does not require a

tracheostomy and may markedly improve quality of life. IPPV can be done easily

in the home and should be considered in people with CMT and respiratory failure

or sleep apnea. Patients may benefit initially from using IPPV mainly at night.

(See also under the heading Breathing)

Both grief and depression can cause fatigue. Grief counselling can often help

get you back to a full happy life.

Stress can also make you very tired. Living with constant stress from family,

stress in the workplace or just pressure to perform beyond your limits (like

working two jobs) can take its toll. Constantly pushing ourselves to perform

every day can mean that our bodies are always exhausted. Being exhausted all the

time means we never give our nerves time to try to repair themselves and our

muscles will atrophy as we push ourselves. Over time a pattern of prolonged

abuse and overuse can see muscles permanently atrophied although they can

atrophy with normal use as well. Nervous exhaustion can also take place. Some of

us have

exceptionally low tolerances to noise and odor, taste and touch as

well as chemicals. Knowing what you cannot tolerate and avoiding it as much as

possible will help you stay on an even keel. Knowing

what makes you tired and learning to pace yourself is the key to

living with CMT.

[Guest guest]

Hi ,

That article is from the old CMTI org. I think it may have been published in one

of their newsletters from the 80's. But it is indexed online at

http://lindacrabtree.com/cmtnews/fatigue/fatiguepage1.html

As for references and index, there aren't any with this as posted, but that's

not to say they don't exist. Greg has published tons plus some other stuff on

fatigue and pain, I'll go through my files and see what I can find. It may be

awhile, my old newsletters are all up it the attic!

Gretchen

[Guest guest]

<My doctors don't acknowledge it as part of CMT either!

Jim. This border on malpractice. There is more than sufficient evidence that

fatigue is a significant part of CMT. Have you asked them on what data the base

this conclusion?

Have you asked them if they have even bothered to look it up?

I don't know if you have the time or the energy or the interest, but fatigue

denial on the part of your doctors needs to be complained about formally to

their supervisory system.

If a doctor won't recognize this, he/she HAS NO BUSINESS treating you. Have them

call Drs. Nollet and Viedler at the Univerity of Amsterdam's Academic Medical

center (www.amc.nl)

Telephone switchboard: 011 3120 566 9111 They can and do speak English.

These doctors have articles that have appeared on within the past year.

The rehabilitation polyclinic there carried out a major study on CMT in the

2003-2006 time period.

They can inform your doctors and their supervisory board as to the extreme

extent of fatigue in CMT/HMSN.

For example, I complained of being too fatigued to work. If I take a job, I will

become in a state of nervous exhaustion within 6 weeks.

They said, " of course. " " Just moving your body around during the day is,'half a

job already.' "

It is sick that your doctors wouldn't recognize fatigue.