Is this Mito normal...

[Guest guest]

I am sorry, as I don't mean to make it " all about me " whenever I write to the

group, but unfortunately I do not have a grasp on this whole Mito thing to be a

constructive participant.

I wish I could " give " more.

That being said....I need help.

Me, always thinking I am fine and can do most anything, decided to go with my

kids on the " cliff walk " in Newport RI.

It is a 3 mile walk and I did not realize that the first half is climbing up and

down rocks.

I made 2 1/2 miles and had to quit and get picked up. I was hurting and

thought I was going to have a heart attack. It was bad. My vision was a little

off, I could breathe fine but felt like I was not getting enough air (I am still

feeling alittle like that), my muscles felt weak all over etc.

Yesterday I hurt all day.

Today, I still hurt and basically just feel very strange. I feel nauseous and

had a sore throat and just feel very detached from everything! It feels like

someone is sitting on my chest also. I am tired.

I am at work right now and feel horrible!

Does this sound familiar to anyone?

I am NOT liking this.

Sheila

[Guest guest]

You made 2 1/2 miles! That's great! I'd be sick for at least 3 days, if I

do more than I should, with a lot of the same symptoms. Remember, the

mitochondria are the power supply of the cells. You depleted your power

suppy, girl! You haven't heard from me much lately. I've moved and I feel

too weak by evening to sometimes even write an e-mail. Sorry to all those

who I should have written to. It took all I could do, just to read the

e-mails that I got.

Blessings,

-- Is this Mito normal...

I am sorry, as I don't mean to make it " all about me " whenever I write to

the group, but unfortunately I do not have a grasp on this whole Mito thing

to be a constructive participant.

I wish I could " give " more.

That being said....I need help.

Me, always thinking I am fine and can do most anything, decided to go with

my kids on the " cliff walk " in Newport RI.

It is a 3 mile walk and I did not realize that the first half is climbing up

and down rocks.

I made 2 1/2 miles and had to quit and get picked up. I was hurting and

thought I was going to have a heart attack. It was bad. My vision was a

little off, I could breathe fine but felt like I was not getting enough air

(I am still feeling alittle like that), my muscles felt weak all over etc.

Yesterday I hurt all day.

Today, I still hurt and basically just feel very strange. I feel nauseous

and had a sore throat and just feel very detached from everything! It feels

like someone is sitting on my chest also. I am tired.

I am at work right now and feel horrible!

Does this sound familiar to anyone?

I am NOT liking this.

Sheila

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Sheila,

Unfortunately, that's very Mito normal. A couple of years ago, I

could walk two miles without a problem. Now, I can barely make it

one block. Yesterday, I swept out the garage, and wound up in bed

for three hours with severe muscle pain and weakness. Likewise, I'm

at work today, and functioning at about 50% of normal (for me).

It's hard to know what your activity threshold is, especially when

it's constantly changing. I can't do the things I could do a year

ago. Every time I over do it, I'm surprised, because it takes less

and less activity to cause problems for me.

But kudos to you for the attempt, and best wishes for a quick

recovery.

Theresa

> I am sorry, as I don't mean to make it " all about me " whenever I

write to the group, but unfortunately I do not have a grasp on this

whole Mito thing to be a constructive participant.

> I wish I could " give " more.

>

> That being said....I need help.

> Me, always thinking I am fine and can do most anything, decided to

go with my kids on the " cliff walk " in Newport RI.

> It is a 3 mile walk and I did not realize that the first half is

climbing up and down rocks.

> I made 2 1/2 miles and had to quit and get picked up. I was

hurting and thought I was going to have a heart attack. It was bad.

My vision was a little off, I could breathe fine but felt like I was

not getting enough air (I am still feeling alittle like that), my

muscles felt weak all over etc.

> Yesterday I hurt all day.

> Today, I still hurt and basically just feel very strange. I feel

nauseous and had a sore throat and just feel very detached from

everything! It feels like someone is sitting on my chest also. I am

tired.

>

> I am at work right now and feel horrible!

>

> Does this sound familiar to anyone?

> I am NOT liking this.

>

> Sheila

[Guest guest]

Trust me...I would not have made the 2 1/2 miles if there was a way out.

Unfortunately there was no turning back. The beginning of the cliff walk is

worse than the end.

I WON'T be doing that again! )

[Guest guest]

Sheila

This sounds very mito related. Please don't do this to yourself, even if you

want to. Pushing beyond your limits causes disease progression in most of

us. I use to walk 3 miles every morning before work and then work all day

and push myself to be involved with my kids. I now have problems walking

from one room to another at home. I wish I had known what I had, so I could

have been more pro-active.

laurie

> From: Smz143@...

> Reply-To:

> Date: Mon, 19 Apr 2004 15:30:32 -0400

> To:

> Subject: Is this Mito normal...

>

> I am sorry, as I don't mean to make it " all about me " whenever I write to the

> group, but unfortunately I do not have a grasp on this whole Mito thing to be

> a constructive participant.

> I wish I could " give " more.

>

> That being said....I need help.

> Me, always thinking I am fine and can do most anything, decided to go with my

> kids on the " cliff walk " in Newport RI.

> It is a 3 mile walk and I did not realize that the first half is climbing up

> and down rocks.

> I made 2 1/2 miles and had to quit and get picked up. I was hurting and

> thought I was going to have a heart attack. It was bad. My vision was a

> little off, I could breathe fine but felt like I was not getting enough air (I

> am still feeling alittle like that), my muscles felt weak all over etc.

> Yesterday I hurt all day.

> Today, I still hurt and basically just feel very strange. I feel nauseous and

> had a sore throat and just feel very detached from everything! It feels like

> someone is sitting on my chest also. I am tired.

>

> I am at work right now and feel horrible!

>

> Does this sound familiar to anyone?

> I am NOT liking this.

>

> Sheila

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Thanks Laurie,

I know I sound ridiculous in saying this, but I usually feel ok. That is my

biggest problem, my brain does not accept that I have a " disease " . I still

don't 100% accept it.

They think I have CPEO. Well, CPEO by definition does not always have all the

other symptoms that the more severe Mito diseases have. I keep thinking my

symptoms should be mostly eye related and any other symptoms should be mild.

There is not alot of info on CPEO as there is on some of the other diseases.

It is very frustrating.

[Guest guest]

Sheila

I use to be the same way and still often push too hard, as one day it is

find and the next time I do the same, it is not okay. You will learn to

accept and adjust. You have to let yourself grieve for the loss of the

health you planned on having.

Thinking of you,

laurie

> From: Smz143@...

> Reply-To:

> Date: Mon, 19 Apr 2004 17:33:25 -0400

> To:

> Subject: Re: Is this Mito normal...

>

> Thanks Laurie,

>

> I know I sound ridiculous in saying this, but I usually feel ok. That is my

> biggest problem, my brain does not accept that I have a " disease " . I still

> don't 100% accept it.

> They think I have CPEO. Well, CPEO by definition does not always have all the

> other symptoms that the more severe Mito diseases have. I keep thinking my

> symptoms should be mostly eye related and any other symptoms should be mild.

> There is not alot of info on CPEO as there is on some of the other diseases.

> It is very frustrating.

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Thanks Laurie,

I will keep that in mind.

Dr. Korson said that exercise was ok. I guess some times are better than

others though.

[Guest guest]

Sorry for not remembering, but where did you move from and then to?

[Guest guest]

Thanks Theresa.

[Guest guest]

Well Ken,

This time scared me. I never felt quite like this.

Now I think I am getting a cold or severe allergies. My throat and chest

don't feel well.

That may have contributed to the bad experience as well.....who knows.

I just know that I will NEVER do the cliff walk again!

It was very pretty though, that is what I saw in between feeling like I was

DYING!

It is on the water and there are mansions everywhere. Very nice

[Guest guest]

Well Laurie,

I also need to lose weight. There are times when a flight of stairs makes me

huff and puff.

[Guest guest]

> I made 2 1/2 miles and had to quit and get picked up.

You made a 2 1/2 mile hike - I'm impressed! I couldn't walk 2 1/2

blocks without my legs giving out on me.

>I was hurting and thought I was going to have a heart attack. It was

bad.

When I was able to attempt a hike like this, I would feel the same way

you did.

>My vision was a little off,

Same thing with me and here I was thinking that this was something

that only happened to me.

>I could breathe fine but felt like I was not getting enough air (I am

still feeling alittle like that), my muscles felt weak all over etc.

Me too.

> Yesterday I hurt all day.

This would happen to me too.

> Today, I still hurt and basically just feel very strange. I feel

nauseous and had a sore throat and just feel very detached from

everything! It feels like someone is sitting on my chest also. I am

tired.

> I am at work right now and feel horrible!

I would still feel soreness and pain and would be so tired that I

could not resist the need for sleep on and off for two - three days

after the hike.

Now I aim for shorter distances and at a much, much slower pace than I

once did.

Ken

[Guest guest]

Sheila

I was told that they are now recommending moderate exercise at a time when

it is possible to do so without a crash. My son has been using a weight

machine and has done well with maintaining and even improving his exercise

tolerance, but he has to be careful not to over-do. I didn't have a

diagnosis until it was too late to exercise very much. I still walk inside

the house and maybe into a restaurant from a close parking space. I also

have a stationary bike that I have gone back to using. The bike with no

resistance was what Dr. Cohen wanted me to try. He suggested a cardiac rehab

program as the appropriate exercise for me. My insurance wouldn't pay for

it, so I just talked with the PT and do it at home.

laurie

> From: Smz143@...

> Reply-To:

> Date: Mon, 19 Apr 2004 22:20:35 EDT

> To:

> Subject: Re: Is this Mito normal...

>

> Thanks Laurie,

>

> I will keep that in mind.

> Dr. Korson said that exercise was ok. I guess some times are better than

> others though.

>

>

>