Re: Breathing Difficulty

[Guest guest]

I have the same question. I have been in really poor health lately - why I dont

know , but it includes shortened breath at times, nausea and belching and more

fatigue. It feels like my lungs have been shoved upwards. It worries me that I

sometimes wake up short of breath - this could be due to cardiac problems. This

also happens after I eat. I certainly have problems with dust etc. That could

be causing it - but its a mystery, a worrisome one given the cardiac angle.

Shortened breath is now on the Canadian list of symptoms common to CFS. It

wasnt on the others but it appears to be a fairly common complaint.

yildiz <yildiz22@...> wrote:

Hi all,

I started to develop asthma type breathing difficulties.This has been going on

since about 2 months. It used to come and go from time to time at previous years

but this time it does not go away. Is this common to cfs? Would you think this

is typical asthma unrelated to illness or could the cause be malfunctioning of

some organs like liver or kidneys due to long term cfs?I noticed it gets less if

I perform coffee enema,that is why I am wondering if this could be due to toxic

load.

Thanks a lot.

Nil

[Guest guest]

Hi Both,

I've had this too accompanied with central chest pain,'tight chest' as

though someone is sitting on me, etc. I have found this to be most

profound during times of greater than usual relapse, and it can be

grossly exagerated by some drugs. Having seen Dr Myhill recently, she

was of the opinion that it was a sign of her belief that ME is a type of

cardiomyopathy due to mitrochondial insufficiency/damage. I have had a

full heart screen before as well as tests for asthma and

hyperventilation - all negative, though of course this too would fit

into her hypothesis.

Rosie

Subject: Re: Breathing difficulty

I have the same question. I have been in really poor health lately -

why I dont know , but it includes shortened breath at times, nausea and

belching and more fatigue. It feels like my lungs have been shoved

upwards. It worries me that I sometimes wake up short of breath - this

could be due to cardiac problems. This also happens after I eat. I

certainly have problems with dust etc. That could be causing it - but

its a mystery, a worrisome one given the cardiac angle.

Shortened breath is now on the Canadian list of symptoms common to CFS.

It wasnt on the others but it appears to be a fairly common complaint.

yildiz <yildiz22@...> wrote:

Hi all,

I started to develop asthma type breathing difficulties.This has been

going on since about 2 months. It used to come and go from time to time

at previous years but this time it does not go away. Is this common to

cfs? Would you think this is typical asthma unrelated to illness or

could the cause be malfunctioning of some organs like liver or kidneys

due to long term cfs?I noticed it gets less if I perform coffee

enema,that is why I am wondering if this could be due to toxic load.

Thanks a lot.

Nil

[Guest guest]

Hi,

I used to get breathing difficulties when toxic, it was more in the

main part of my lungs than higher up in the bronchioles. Toxins

used to cause this. My chinese doc used to say it was the kidneys

in some instances and accupuncture helped it then. When my liver

was bad once it happened too. Also allergy to autumn moulds causes

this. I found that drinking something alkaline like sodium plus

potassium bicarbonate used to help when it wasn't true asthma.

Breathing exercises to correct overbreathing help too.

Cheers,

Carol

>

> Hi all,

>

> I started to develop asthma type breathing difficulties.This has

been going on since about 2 months. It used to come and go from time

to time at previous years but this time it does not go away. Is this

common to cfs? Would you think this is typical asthma unrelated to

illness or could the cause be malfunctioning of some organs like

liver or kidneys due to long term cfs?I noticed it gets less if I

perform coffee enema,that is why I am wondering if this could be due

to toxic load.

> Thanks a lot.

> Nil

>

>

[Guest guest]

Rosie,

doing FIR sauna made me have that kind of chest pain and I'd never had it before

and also gave me more pain all over in new places I never had it before, so if

you choose to go that route be careful. The chest pain lasted almost 6 mo after

doing the sauna's before it finally went away and hasnt' been back.

Marcia

Re: Breathing difficulty

I have the same question. I have been in really poor health lately -

why I dont know , but it includes shortened breath at times, nausea and

belching and more fatigue. It feels like my lungs have been shoved

upwards. It worries me that I sometimes wake up short of breath - this

could be due to cardiac problems. This also happens after I eat. I

certainly have problems with dust etc. That could be causing it - but

its a mystery, a worrisome one given the cardiac angle.

Shortened breath is now on the Canadian list of symptoms common to CFS.

It wasnt on the others but it appears to be a fairly common complaint.

yildiz <yildiz22@...> wrote:

Hi all,

I started to develop asthma type breathing difficulties.This has been

going on since about 2 months. It used to come and go from time to time

at previous years but this time it does not go away. Is this common to

cfs? Would you think this is typical asthma unrelated to illness or

could the cause be malfunctioning of some organs like liver or kidneys

due to long term cfs?I noticed it gets less if I perform coffee

enema,that is why I am wondering if this could be due to toxic load.

Thanks a lot.

Nil

[Guest guest]

Thanks Carol,

After reading your note I realized that mine also seems to be in the lungs

and not in the bronchioles.Would you classify magnesium hydroxide (Milk of

magnesia) as an alkali which would help?

thanks

nil

Re: Breathing difficulty

> Hi,

>

> I used to get breathing difficulties when toxic, it was more in the

> main part of my lungs than higher up in the bronchioles. Toxins

> used to cause this. My chinese doc used to say it was the kidneys

> in some instances and accupuncture helped it then. When my liver

> was bad once it happened too. Also allergy to autumn moulds causes

> this. I found that drinking something alkaline like sodium plus

> potassium bicarbonate used to help when it wasn't true asthma.

> Breathing exercises to correct overbreathing help too.

>

>

[Guest guest]

Hi Rosie and Cort,

I had this chest pain since about 1997. It gradually increased and it is

quite bothering me at this time. I strangely also have a pain going through

my chest towards my left shoulder from time to time.I was thinking that

these were muscle pain.So,thanks for pointing out that these could also be

related to heart.

Nil

Re: Breathing difficulty

>

> I have the same question. I have been in really poor health lately -

> why I dont know , but it includes shortened breath at times, nausea and

> belching and more fatigue. It feels like my lungs have been shoved

> upwards. It worries me that I sometimes wake up short of breath - this

> could be due to cardiac problems. This also happens after I eat. I

> certainly have problems with dust etc. That could be causing it - but

> its a mystery, a worrisome one given the cardiac angle.

>

> Shortened breath is now on the Canadian list of symptoms common to CFS.

> It wasnt on the others but it appears to be a fairly common complaint.

>

> yildiz <yildiz22@...> wrote:

> Hi all,

>

> I started to develop asthma type breathing difficulties.This has been

> going on since about 2 months. It used to come and go from time to time

> at previous years but this time it does not go away. Is this common to

> cfs? Would you think this is typical asthma unrelated to illness or

> could the cause be malfunctioning of some organs like liver or kidneys

> due to long term cfs?I noticed it gets less if I perform coffee

> enema,that is why I am wondering if this could be due to toxic load.

> Thanks a lot.

> Nil

>

>

[Guest guest]

Hi Nil,

I don't know about milk of magnesia. Magnesium sulphate (Epsom

salts) is good though. In UK you can buy something called Alkaclear

for making one more alkaline.

The Cheney breathing technique where you breathe in for 4, hold

for 7 and then breathe out for 8 pursing the lips is a good one for

lungs. Do this 8 times twice a day.

Cheers,

Carol

>

> Thanks Carol,

>

> After reading your note I realized that mine also seems to be in

the lungs

> and not in the bronchioles.Would you classify magnesium hydroxide

(Milk of

> magnesia) as an alkali which would help?

>

> thanks

> nil

> Re: Breathing difficulty

>

>

> > Hi,

> >

> > I used to get breathing difficulties when toxic, it was more in

the

> > main part of my lungs than higher up in the bronchioles. Toxins

> > used to cause this. My chinese doc used to say it was the

kidneys

> > in some instances and accupuncture helped it then. When my liver

> > was bad once it happened too. Also allergy to autumn moulds

causes

> > this. I found that drinking something alkaline like sodium plus

> > potassium bicarbonate used to help when it wasn't true asthma.

> > Breathing exercises to correct overbreathing help too.

> >

> >

>

[Guest guest]

Hi, Carol and the group.

I just want to note that in a normal, healthy person, one of the

locations in which glutathione is most concentrated is in the

epithelial lining fluid that lines the alveoli (air sacs) that are

in the deep part of the lung. This glutathione protects the lungs

from inhaled oxidants and toxins, and also protects against the

reactive oxygen species that are produced by immune cells as they

fight lung infections.

It seems reasonable to me that in CFS the epithelial lining fluid

might be low in glutathione, particularly during " crashes, " and this

might make the deeper part of the lungs more vulnerable to toxins,

oxidants (such as ozone in air pollution) and pathogens.

I haven't heard many PWCs mention lung problems in the past, and

I've wondered why not, in view of the above. The lungs have high

priority, together with the kidneys, for taking glutathione from the

blood. That may be why they do as well as they do in CFS, except

when there are really " down " times.

Rich

>

> Hi,

>

> I used to get breathing difficulties when toxic, it was more in

the

> main part of my lungs than higher up in the bronchioles. Toxins

> used to cause this. My chinese doc used to say it was the kidneys

> in some instances and accupuncture helped it then. When my liver

> was bad once it happened too. Also allergy to autumn moulds

causes

> this. I found that drinking something alkaline like sodium plus

> potassium bicarbonate used to help when it wasn't true asthma.

> Breathing exercises to correct overbreathing help too.

>

> Cheers,

> Carol

[Guest guest]

Thanks Carol,

I do Cheney's technique. yes it helps. Coffee enemas also do. I also read

somewhere that spraying h2o2 -3 percent solution directly to the throat

would also help in emergency cases. I have not tried that yet.

best wishes:)

Nil

Re: Breathing difficulty

> Hi Nil,

>

> I don't know about milk of magnesia. Magnesium sulphate (Epsom

> salts) is good though. In UK you can buy something called Alkaclear

> for making one more alkaline.

>

> The Cheney breathing technique where you breathe in for 4, hold

> for 7 and then breathe out for 8 pursing the lips is a good one for

> lungs. Do this 8 times twice a day.

[Guest guest]

Hi Marcia,

Thanks for the warning. I don't like the idea of the FIR saunas as my

temp control is so wacky I don't think I could cope with the extra

sweating!

Rosie

Breathing difficulty

Rosie,

doing FIR sauna made me have that kind of chest pain and I'd never had

it before and also gave me more pain all over in new places I never had

it before, so if you choose to go that route be careful. The chest pain

lasted almost 6 mo after doing the sauna's before it finally went away

and hasnt' been back.

Marcia

Re: Breathing difficulty

I have the same question. I have been in really poor health lately -

why I dont know , but it includes shortened breath at times, nausea

and

belching and more fatigue. It feels like my lungs have been shoved

upwards. It worries me that I sometimes wake up short of breath -

this

could be due to cardiac problems. This also happens after I eat. I

certainly have problems with dust etc. That could be causing it - but

its a mystery, a worrisome one given the cardiac angle.

Shortened breath is now on the Canadian list of symptoms common to

CFS.

It wasnt on the others but it appears to be a fairly common complaint.

yildiz <yildiz22@...> wrote:

Hi all,

I started to develop asthma type breathing difficulties.This has been

going on since about 2 months. It used to come and go from time to

time

at previous years but this time it does not go away. Is this common to

cfs? Would you think this is typical asthma unrelated to illness or

could the cause be malfunctioning of some organs like liver or kidneys

due to long term cfs?I noticed it gets less if I perform coffee

enema,that is why I am wondering if this could be due to toxic load.

Thanks a lot.

Nil

[Guest guest]

I do, I have been on and off puffer's many times. I get pain in my chest as

well that no Dr. can explain so I assume it is the muscles that makes my lungs

work. I have told them as well that it must be the CMT but they do not believe

me. The pain seems to be better now that I take Vitamin C.

Matt

[Guest guest]

Hi,

I am 44 yrs old and have asthma and sleep apnea where I use a c-pap machine, my

9 yr old son also uses a c-pap machine ,and yes we both have CMT,if it was not

for my son I would not want to live anymore,I'm tired of popping pills after

pills after pills and being in pain still!!!!

Good-luck

Roxanne

[Guest guest]

Matt, I have the same pain when breathing once a year for about a week. I have a

Bachelor's in Health and Welness ~ironically ; )~ and feel that it is the

intercostal muscles also (between the ribs). Good to know that other CMTers also

feel it's related to CMT.

Dawn

It's not having what you want, it's wanting what you got.

[Guest guest]

Roxanne,

I know how you feel. I have a 6 year old son and the way I feel now with my CMT,

I would not want to live with this CMT either if it wasn't for him. But, don't

forget, you are more than just your disability.

Dawn

[Guest guest]

Matt -

My son (14) has a cough that no doctor has been able to explain..taking

deep breaths (like when he laughs) causes horrible coughing spells. I

firmly believe it has to do with his CMT. He's been on puffers,

nebulizer, had bronchoscopy and endoscopy, CAT scan, MRI yada yada

yada...there is still so much to learn about how CMT affects the body.

I started him on 1000 mg of Vitamin C about a year ago and he doesn't complain

much about chest pain anymore which is great, but the cough has not gotten any

better - which I had hoped it would. He also doesn't seem to get as many sore

throats either.

[Guest guest]

Roxanne -

What meds do you take that aren't working? Is it perhaps time for a

shake up in your medications? I know that we've seen meds lose their

effectiveness after a while with my son and they need to be either completely

changed or tweaked in strength.

Just a thought....You have to keep going....vent, and cry and get it

all out and then keep going....each of us has our purpose in

life....and yours just might be setting the best example possible for your son

to show him that the life ahead of him will be full and

blessed.

Praying you have a pain free day!

[Guest guest]

Hello Joe,

All the same for me but not as bad as you describe. I tried a C-PAP and couldn't

breathe out at the lowest setting of pressure. Despite the protestations of the

CMT docs, I think the phrenic nerves are affected by the disease. My new trick

is passing out (how about you) and we are gathering data that it is not due to

the heart problems. Neuro doc is next.

EdM from NH

[Guest guest]

, thats a good start. I still cough when it is cold outside and when I

wake up in the morning other then that not to bad. Glad to here the Vit C is

helping some what. I wonder if we are giving them enough Vit C. My daughter

has CMT as well and I give her Vit C she is 7 and I give her 1000 mg/day. She

weighs about 70 lbs. I have been thinking for bumping her up to 1500/day

3X500mg, with breakfast lunch and dinner. Still unsure though. It's hard to

tell how much it is really helping her. She seems to be better sometimes but

still gets foot pain and night sometimes.

Thanks

[Guest guest]

My doctor said I have asthma. The last few years (in

November), I start having trouble breathing. Mostly at

night. On and off through the winter, occasionally in

the summer. In NJ, I was on Advair. When I moved to

Canada, my doc switched me to Salbutamol 100MCG, 2

puffs whenever I need it. I guess I should keep better

track of when I need the puffer.

JoAnn N.

Newfoundland, Canada

[Guest guest]

All this talk about breathing difficulties has got me noticing my own

difficulties. I never associated them with my CMT. First off, just

about every morning when I wake up I have a tightness in my chest. If

I take a deep breath I get a sharp pain in my chest and couch

voilently. The doctors say I'm getting enough oxygen but sometimes it

doesn't feel like it. I will get dizzy spells sometimes out of

nowhere and almost pass out. Which, depending on what I'm doing

could be dangerous.

The doctors can't find a reason and I think they're starting to believe I'm a

hypocondriac. It's frustrating.

Back in H.S. I used to get something called plurasy a lot. It made

breathing very painful and I was on a nebulizer many times for quite

a while each time.

Another thing is that almost any kind of smoke bothers me. Especially cigarette

smoke. My husband smokes and over the last 8 year I have known him, I have

built up only a small tolerence to it. He trys hard not to smoke aound me

because he knows it bothers me which I appreciate. His parents however,(who

live with us temporarily...I hope) don't care where they smoke or who it

bothers.

His mother's philosophy is that theres already chemicals in the air we breathe

so cigarette smoke is no different. She seems to believe that it's better for

kids to get use to the smoke early so it wont cause them to cough later. I

completely disagree with all of that but she's always " right " and you can't

convince her otherwise.

We have an air purifier which seems to help some but his parents are chain

smokers and that an awful lot of smoke for one machine to quickly clean. I just

want to know if anyone else has a problem breathing around smoke, or is it just

me?

Jane

[Guest guest]

Hi Matt -

My son is 14, 6' tall and weighs 175 pounds...maybe I should

consider uping the dosage? I know that we excrete excess

vitamins...but I worry about stomach upset and funny tastes being

left in his mouth.

He is on Neurontin twice a day for pain and Zanaflex for muscle spasms. He used

to take the Zanaflex am and pm, but it makes him drowsy. Since the leg cramps

happen more during the evening and night he only takes it at bedtime now. It

seems to keep him painfree during the night and he no longer falls out of bed -

which was a huge issue for over a year.

For occassional flare ups for pain during the day he can usually take and Advil

and continue on with the rest of his day.

I just wish we could figure out what causes the cough for real and

find a way to treat it. It really is a horrible sounding thing.

Hope you have a great day!

[Guest guest]

Hello Jane,

I also can't be around any kind of smoke.

Years ago my sister had told her Doctor she was having problems breathing. He

told her it had nothing to do with CMT. A few years later she ended up in ICU.

They gave her a trach, and was not sure how long she would live. At that time

they advised me to be tested, and found it was related to CMT. I was then put

on a Bi-pap machine to help me breathe at night, and to help give my diaphragm a

rest. They felt this may help slow down the progression of the CMT affecting my

diaphragm, but was not sure. I would advise anyone

affected by breathing problems to get on a Bi-pap right away. The reason

being... because it does help with the side effects of not getting enough

oxygen.

I hope this helps,

Kay~ Seaside Oregon

[Guest guest]

Thanx for all the discussion regarding breathing problems and CMT. I

am now undergoing tests for breathing problems and will have another

sleep apnea test to adjust the settings on my Bi-PAP machine. Of

course, I keep hearing the " you need to lose a few pounds " story each

time I visit my pulmonologist.

There are some good articles about breathing problems on this site

under " Files " . Go to the " Breathing and CMT " area and especially read

the 2nd file, " Breathing Problems in CMT. " I've already enlightened

several of my doctors with this information. Never be surprised to

learn that your doctors are not always up-to-date on their CMT.

---Joe