Re: Tired of feeling tired

[Guest guest]

Hi , I hope you get the leg pain and jumping under control

soon. I hear your fustrations. I too get so upset when my doc and

i try many different treatment options and they dont seem to work.

And it must be even more fustrating for you because of the lack of

sleep, which we all know just causes us more problems. I too am a

mom with Mito and have a child with mito, and some days my husband

and my older children have to do the taking care of everything. And

i thank God that i have that kind of help, because there are days i

just cant do a thing, but stay in bed and sleep. I hope you have

someone there to help you. And i dont think your complaining, your

just venting and there is a big difference!! You have to get things

off your chest that are bothering you, holding in fustration and

stress can really do harm. I know after i vent that yes " the sun

comes out, tomorrow or soon after!!! " LOL Have you tryed Baclofen

for your leg pain and spasms. My son takes it three times a day and

it is working well for him. I only take it as need, and i swear by

it. I'll keep you in my thoughts and prayers, that you get relief

and soon! Barb

[Guest guest]

You need to vent to help your stress level which has got to be through the

roof. Vent whenever you have the need. Their are folks here who can

certainly nod their heads in understanding.

I sure wish there was something I could do to help.

laurie

>

> Reply-To:

> Date: Thu, 20 Jan 2005 17:40:45 -0000

> To:

> Subject: Tired of feeling tired

>

>

> I posted a few days back about the constant muscle movements I am

> having in my legs. I saw the doc on Monday and he prescribed Quinine.

> I had been on it in the past(Dr.Cohen started it along with

> Neurontin). The pain has gotten worse and the muscles jumping around

> are interfering with sleep and any type of rest I am attempting to

> get. I am SO TIRED of feeling tired! When I get into a crash or have

> persistent symptoms that seem to be unresponsive to treatment I get

> so frustrated! I know that my Doc is doing all he can and is

> wonderfully supportive, but sometimes I feel like I am fighting this

> battle alone. I don't like complaining, because I don't think it gets

> a person anywhere, but days like today make me feel like I am

> fighting a losing battle.

>

> Sorry for the pity party, it not usually my style, but I have been

> thru so much the last 6 months. Five surgeries, IV Fluids on a

> regular basis, chronic resp. trouble.........on and on! Of course I

> take care of 3 kids, two who are also affected with Mito so I really

> don't have time to have pity for myself. My younger son who is very

> involved requires constant care and that alone can be so

> overwhelming. I am sure I will feel better tomorrow------the sun will

> come out, right? Thanks for being there :-)

>

>

>

[Guest guest]

You need to vent to help your stress level which has got to be through the

roof. Vent whenever you have the need. Their are folks here who can

certainly nod their heads in understanding.

I sure wish there was something I could do to help.

laurie

>

> Reply-To:

> Date: Thu, 20 Jan 2005 17:40:45 -0000

> To:

> Subject: Tired of feeling tired

>

>

> I posted a few days back about the constant muscle movements I am

> having in my legs. I saw the doc on Monday and he prescribed Quinine.

> I had been on it in the past(Dr.Cohen started it along with

> Neurontin). The pain has gotten worse and the muscles jumping around

> are interfering with sleep and any type of rest I am attempting to

> get. I am SO TIRED of feeling tired! When I get into a crash or have

> persistent symptoms that seem to be unresponsive to treatment I get

> so frustrated! I know that my Doc is doing all he can and is

> wonderfully supportive, but sometimes I feel like I am fighting this

> battle alone. I don't like complaining, because I don't think it gets

> a person anywhere, but days like today make me feel like I am

> fighting a losing battle.

>

> Sorry for the pity party, it not usually my style, but I have been

> thru so much the last 6 months. Five surgeries, IV Fluids on a

> regular basis, chronic resp. trouble.........on and on! Of course I

> take care of 3 kids, two who are also affected with Mito so I really

> don't have time to have pity for myself. My younger son who is very

> involved requires constant care and that alone can be so

> overwhelming. I am sure I will feel better tomorrow------the sun will

> come out, right? Thanks for being there :-)

>

>

>

[Guest guest]

((((((((((((((((((BIG HUGS))))))))))))))

mitomomtoo mitomomtoo@...> wrote:

I posted a few days back about the constant muscle movements I am

having in my legs. I saw the doc on Monday and he prescribed Quinine.

I had been on it in the past(Dr.Cohen started it along with

Neurontin). The pain has gotten worse and the muscles jumping around

are interfering with sleep and any type of rest I am attempting to

get. I am SO TIRED of feeling tired! When I get into a crash or have

persistent symptoms that seem to be unresponsive to treatment I get

so frustrated! I know that my Doc is doing all he can and is

wonderfully supportive, but sometimes I feel like I am fighting this

battle alone. I don't like complaining, because I don't think it gets

a person anywhere, but days like today make me feel like I am

fighting a losing battle.

Sorry for the pity party, it not usually my style, but I have been

thru so much the last 6 months. Five surgeries, IV Fluids on a

regular basis, chronic resp. trouble.........on and on! Of course I

take care of 3 kids, two who are also affected with Mito so I really

don't have time to have pity for myself. My younger son who is very

involved requires constant care and that alone can be so

overwhelming. I am sure I will feel better tomorrow------the sun will

come out, right? Thanks for being there :-)

[Guest guest]

,

my dear friend

{{{{{{{ HUGS }}}}}}

when ever down and out

pause for a brief moment....

and think of..............

yes thats right.

our PT guy!!!

hey girl call me today if you like ........

im always here for you

[Guest guest]

,

I am so sorry you are having a rough time right now. Never be

afraid to vent. It is healthy and we are all here for you. You

certainly have had an eventful year and I know you put your heart and

soul into raising your three kids. You are always in my thoughts!

I have also been fighting resp. issues, which is why I haven't

been on much.

Smiles and hugs!

a

[Guest guest]

Thanks Barb for the encouraging words. I have tried Baclofen before

for neck and headache pain.------at least that is what I think I was

taking it for, LOL. I feel like a human pharmacy. There are some meds

I get filled only to use them for a few days or weeks then we are off

to try another.What I pay a month in co-pays plus cocktail

supplements for the three of us in mind blowing. We even us a

maintance pharm thru the mail for 3 month supplies, but the ole take

it for a few weeks or a month happens with those scripts as well.

I called my Neuro to ask him about a treatment for the muscle pain

and movemnets. I am waiting to hear back from him. I honestly try NOT

to call him because I have had my liscence suspended twice for

seizures and he is the only one who can sign off the papers for the

state that I am healthy enough to drive. I mostly use my PCP for

everything and he is great about calling Dr. Cohen if needed for

support. I am sure the Neuro will have me come in sooner than the

appt that is scheduled for Feb, but as long as I continue to be sz

free than I don't mind going to see him. I know that probably sounds

nuts but since I have had so many past Neuros for me and the boys

that have caused me more grief than you imagine; I am trying to only

use him when the PCP is out of ideas. I DON'T want to call him w/

every symptom because he is an important link between me and

driving :-) Even thou he is Mito Savy, I hate to run in there w/

every ache and complaint. My old Neuro had me call and check in and

come in monthly. We all know how are health can change day to day, so

if I saw him on " bad day " then he was all over me about how this

disease was affecting my parenting skills and my ability to be a

INDEPENDENT as possible. I dumped him after the last tet-a-tet we had

over pre-op clearance last Jan.

Sorry for the ramble, but is so comforting to know you all understand.

Just call me paranoid,

>

> Hi , I hope you get the leg pain and jumping under control

> soon. I hear your fustrations. I too get so upset when my doc and

> i try many different treatment options and they dont seem to work.

> And it must be even more fustrating for you because of the lack of

> sleep, which we all know just causes us more problems. I too am a

> mom with Mito and have a child with mito, and some days my husband

> and my older children have to do the taking care of everything.

And

> i thank God that i have that kind of help, because there are days i

> just cant do a thing, but stay in bed and sleep. I hope you have

> someone there to help you. And i dont think your complaining, your

> just venting and there is a big difference!! You have to get

things

> off your chest that are bothering you, holding in fustration and

> stress can really do harm. I know after i vent that yes " the sun

> comes out, tomorrow or soon after!!! " LOL Have you tryed Baclofen

> for your leg pain and spasms. My son takes it three times a day

and

> it is working well for him. I only take it as need, and i swear by

> it. I'll keep you in my thoughts and prayers, that you get relief

> and soon! Barb

[Guest guest]

Laurie, thanks for being there....believe me you are doing something

to help-- just by being such a good friend.

>

>

> You need to vent to help your stress level which has got to be

through the

> roof. Vent whenever you have the need. Their are folks here who can

> certainly nod their heads in understanding.

>

> I sure wish there was something I could do to help.

>

> laurie

>

> > From: " mitomomtoo "

> > Reply-To:

> > Date: Thu, 20 Jan 2005 17:40:45 -0000

> > To:

> > Subject: Tired of feeling tired

> >

> >

> > I posted a few days back about the constant muscle movements I am

> > having in my legs. I saw the doc on Monday and he prescribed

Quinine.

> > I had been on it in the past(Dr.Cohen started it along with

> > Neurontin). The pain has gotten worse and the muscles jumping

around

> > are interfering with sleep and any type of rest I am attempting to

> > get. I am SO TIRED of feeling tired! When I get into a crash or

have

> > persistent symptoms that seem to be unresponsive to treatment I

get

> > so frustrated! I know that my Doc is doing all he can and is

> > wonderfully supportive, but sometimes I feel like I am fighting

this

> > battle alone. I don't like complaining, because I don't think it

gets

> > a person anywhere, but days like today make me feel like I am

> > fighting a losing battle.

> >

> > Sorry for the pity party, it not usually my style, but I have been

> > thru so much the last 6 months. Five surgeries, IV Fluids on a

> > regular basis, chronic resp. trouble.........on and on! Of course

I

> > take care of 3 kids, two who are also affected with Mito so I

really

> > don't have time to have pity for myself. My younger son who is

very

> > involved requires constant care and that alone can be so

> > overwhelming. I am sure I will feel better tomorrow------the sun

will

> > come out, right? Thanks for being there :-)

> >

> >

> >

[Guest guest]

-

,

THANKS SO MUCH fo making me smile for the first time in a few day!!

I just came back from PT---so you know at least I was smiling this

morning!! But as you know for different reasons, .

I'll call you in a bit,Chrsitine

-- In , MitomomX3@a... wrote:

> ,

> my dear friend

> {{{{{{{ HUGS }}}}}}

> when ever down and out

> pause for a brief moment....

> and think of..............

> yes thats right.

> our PT guy!!!

> hey girl call me today if you like ........

> im always here for you

>

>

>

>

[Guest guest]

a, I owe you a call. I am going to try to call you this

weekend. What day is best for you? Feel better!

> ,

> I am so sorry you are having a rough time right now. Never

be

> afraid to vent. It is healthy and we are all here for you. You

> certainly have had an eventful year and I know you put your heart

and

> soul into raising your three kids. You are always in my thoughts!

> I have also been fighting resp. issues, which is why I

haven't

> been on much.

>

> Smiles and hugs!

> a

>

>