Re: Respiratory/Breathing

[Guest guest]

RE: Sara Jane and Cat/ Breathing and Respiratory

Cat; I aqpologize!!!!I don't remember seeing the post

either. If you don't get an answer maybe try again! We

get narrowed in on certain " hot topics " sometimes and

forget to respond to others!

I do from time to time have severe flu like symptoms

and have lots of allergies especially spring and fall.

Mold, dust, pollen and chicken feathers (I live in NW

AR)It puts me in bed with severe aches , pains, and

migraines. (I had a severe sinus infection last winter

and didn't know it til it was serious because I

assumed it was just allergies making me feel flu like

again)

I have to suck on cough drops all the time for my body

over produces (auto immune) phlegm and I can't breath

around it and get choked easily. I had a severe bout

of Mononeucleosis when I was 13 and missed the whole

first month of school that year. Never the same since.

I did'nt know about my CMT then though. And the docs

told me, once you have mono you are a carrier and you

may have reoccurances of the fatigue, muscle pain and

even (chronic)sore throat. You may feel like you have

it again but not really have it.?????? Since that time

I also developed Chronic Bronchitis! Sometimes when

Doctors don't have an answer or don't know I think

they tell you something to keep from saying " I don't

know! "

I think now it's been my CMT all along when I'd have

those flair ups and yes, my immune system is affected

Due to CMT IMHO;

Gretchen not to dispute you but in my case I've been

severely Anemic (hemeglobin stays at 7 and 8 (average

should be 13 for a woman)whether I take iron, and eat

iron rich foods or not) my whole life and the Mayo

doctors say it is very common in CMT patients (DNA

defect) due to lack of ability to process protiens,

fats and sugars properly. I was told my whole life

that being anemic was " just normal for you " ! (because

they didn't have an answer for why!)

Immune system gets weaker (and or becomes auto immune

and over powers the ability to keep up) with each

illness, injury or surgery etc. because we can not

regenerate like normal folks so it depends on how your

personal body is metabolizing. Which mine don't

metabolize well and I have many complicated issues as

a result. A CMT body is in a constant state of being

USED up; and we don't regenerate or restore our cells

like " normal " bodies do..

The doc gave me medicine that reduces the production

of phlegm. He also gave me an " acid blocker " like for

GERD to reduce possible pressure on diaphragm from

acid reflux. (even if you don't think you have acid

reflux there be enough pressure for someone with

weakened diaphragm muscle/ our body can't tolerate it

as a normal person would)

I don't have as many problems now at night but when I

do I wake with " asthma like attacks " where my airways

are shutting down completely at times. Spells last

about 3 minutes or so but then it's hard to rest after

wards for the body goes into spasms and muscles stay

tense.

I've had a sleep study done and show apnea all night;

I understand I may be in need of a CPAP machine to

keep airways open for me at night. I had a severe

neck injury (atlas bone; pivotal bone at top of

spine)doesn't stay aligned properly and may be causing

Phrenic nerve signals to be interrupted during sleep

and in supline position. (presses in on nerves slowing

or cutting off signals to diaphragm in sleep; phrenic

nerves are the only motor source for diaphragm to

breath during time autonomic nervous system is

controling breathing)

During the day I sometimes get the sensations you

describe, a very hot feeling and nauseaed like I will

pass out, light headed but pounding heart and like my

heart is in my throat. I think I notice it more when I

have over done a day or two before and body is just

trying to cope with the load it's under. (again I feel

it is due to an inability to restore , regenerate and

recuperate. Takes us longer to gain energy back! Maybe

used up our reserves which are very limited! Also can

be due to improper exchange of carbon monoxide and

oxygen in the system and is toxic causing the

sensation of nausea and temperature elevation) DEEP

BREATHING may relieve it!

I am learning to cope by pacing daily! Allowing myself

more rest periods during the day;( if I can't lay

down; I take a few moments ,close my eyes and do deep

breathing and relaxation exercises. Focusing inward

and on breathing slow and deep. Try to do things to

promote deep restful sleep! ( drink Tension Tamer Tea

30 minutes before bed; take a hot bath and relax

muscles; do deep breathing exercises when first laying

down; don't eat meals two hours before bed time or

laying down)

These are things that work for me personally:

I have learned about promoting good energy from the

food I eat; I eat smaller portions but more often; I

don't eat highly processed foods; they are harder to

digest;eat fresh foods and raw or steamed when you can

(more natural enzymes help you digest the food so your

body don't have to work so hard to digest)Don't drink

beverages with a meal; drink water (oxygen in system

helps) half hour before eating foods or half hour

after; even a little red wine is good before meal for

digestion. Believe it or not your digestion takes more

energy from the body than running or jogging!

So Don't eat great huge meals or hard to digest foods

before or after needing to do high level chores that

will burn too much energy and rob your energy source;

can affect your heart rate, breathing etc.

You are not alone in your symptoms and I do hope some

of what I share is helpful!

~~~~~~~~~~~HUGS LIBBY

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" I THANK GOD FOR MY HANDICAPS, FOR, THROUGH THEM, I HAVE FOUND MYSELF, MY WORK,

AND MY GOD. " - Helen Keller

" Smile, it is the key that fits the lock of everybody's heart. " ~~~~~~~

J. D'Angelo

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Living w/CMT http://www.geocities.com/charcot_marie_tooth

CAMPAIGNING for CMT Awareness http://www..org

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