Re: 'normal' CMT fatigue

[Guest guest]

,

I'd like to clarify what I meant when I used the words  " normal CMT fatigue " in

response to Matt's comment about yawning on Monday morning.

In no way was I implying that there is any " normal " or standard level of fatigue

that everyone with CMT experiences.  That, of course, would be ridiculous.  We

all are aware that this is a disease that impacts everyone in a unique way. 

I was also not implying that it's impossible for someone with CMT to experience

fatigue immediately upon waking from sleep.  That too would be ridiculous.  I

personally experience severe, disabling fatigue.  So I'm very familiar with the

waves of fatigue that race up and down through my body as soon as I try to stand

up in the morning or the extreme fatigue that occurs when attempting such simple

tasks as trying to shower or get dressed.  So that wasn't my point at all.

What I was trying to say is that yawning isn't necessarily a symptom of fatigue

at all.  While many people associate yawning with fatigue, it can actually be a

symptom of sleep apnea and a sign that carbon dioxide has built up in the body

throughout the night.  The yawn can be the brain's way of trying to clear out

that carbon dioxide.  My husband has sleep apnea and recently started using a

cpap.  He's seen a dramatic improvement in his ability to get restful sleep

since using the machine.  Coincidentally, he used to yawn constantly in the

morning.  Now he only yawns when he gets tired at night! 

Since sleep apnea is very common among CMTers, and it's not always easy to

detect which symptoms are CMT-related, I thought it would be good to mention the

apnea to Matt as a possible reason for the yawning.  But...the three kids and

lack of sleep, which he later mentioned, could also be a definite cause as

well!!!

[Guest guest]

Matt,

That sounds like EVERY DAY I've had for the last 19 years and I'm 39 now. I

don't know if it's because of the CMT and I feel I have to prove myself but at

any job I've ever had I've always pushed myself harder than anyone I know. When

I had to go to sit-down jobs, I always put myself harder into concentrating on

my work because that made me forget the pain in my feet a bit.

At one job I was told I was handling TOO MANY calls and it threw off the

averages!!!!!! and to slow down which I literally couldn't. But, the squeezing

in your foot might be a swelling (I get that because of arthritis in my ankles

due to the ankle moving wrong). Just wanted to say that I wish it was only once

in a blue moon and I can't imagine a day without severe pain and alot of

fatigue, which, believe it or not, exercise does help and if they can be floor

exercises or non weight bearing such as biking or swimming, that increases my

energy for other things I do as a single mom.

Dawn

[Guest guest]

Matt:

You are describing every day I went to work at my job at KLM head

office in Amsterdam. No energy in the morning, difficult to get to and

from work. Tired all the time. Boss complains about slowness of work.

Get home. Make dinner. No energy to do anything else, except I thought

I needed to " work out, " so I would ride my bike around the city for 45

minutes sometimes, until it got too cold.

Could only keep this up for 8 months, after which I had to leave my

job and return to the USA.

Tried again in German and Holland in 1996 and 97. I can get the jobs

with my languages and degrees, but I cannot do them to the level of

speed and quality that other potential employees can or could. I left

in a state of total physical exhaustion in 1997. After this I stopped

looking for work.

I was fired from my job in Germany and not hired again in Holland

until 2003. From 2003-2005, I worked part time, but this also began to

be too much.

So I feel for you because I have been there, but I am glad you are

still working.

P.S.

The stores at that time in the 1990s all closed at 6:00, and I

arrived home at 5:55. Thankfully they were open until 9 on thursday

and then there was Saturday. But the shops were also closed on Sunday

and monday 'until 12 or 1.

So it was also hard to keep food in the house, as the energy and time

horizons did not match.

[Guest guest]

To everyone:

Everyone is talking about " normal " CMT fatigue. Technically that fatigue only

comes from the parts of your body that get tired after doing it over a certain

period of time. This fatigue comes only comes from my legs because the muscles

are weakend. That is why I cannot walk long distances. The upper part of my

body, meaning my chest, heart, and mind want to keep going but not my legs. If

others have CMT where the legs are only affected, but are having breathing

problems they need to work on cardio exercises such as bicycling. Parenting,

working, etc. is another type of normal fatigue that we all experience at some

level or not. Everyone experiences their type of fatigue at some level.

Marin from Bridgeport, CT

[Guest guest]

A funny thing about being exhausted all of the time. I stopped

taking my medications (Effexor and Neurontin) and I seem to have a

lot more energy.

[Guest guest]

CMT and fatigue: Why are we so tired?

by Greg , M.D. University of Washington

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.

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

[Guest guest]

,

Good for you ! That is another reason why I don't take a lot of medication.

Only the ones that are proven to work.

[Guest guest]

Matt,

That sounds like EVERY DAY I've had for the last 19 years and I'm 39 now. I

don't know if it's because of the CMT and I feel I have to prove myself but at

any job I've ever had I've always pushed myself harder than anyone I know. When

I had to go to sit-down jobs, I always put myself harder into concentrating on

my work because that made me forget the pain in my feet a bit.

At one job I was told I was handling TOO MANY calls and it threw off the

averages!!!! !! and to slow down which I literally couldn't. But, the squeezing

in your foot might be a swelling (I get that because of arthritis in my ankles

due to the ankle moving wrong). Just wanted to say that I wish it was only once

in a blue moon and I can't imagine a day without severe pain and alot of

fatigue, which, believe it or not, exercise does help and if they can be floor

exercises or non weight bearing such as biking or swimming, that increases my

energy for other things I do as a single mom.

Dawn