Re: lousy day

[Guest guest]

LING

Never be sorry about venting--thats the name of the game around here. Im not too familiar with the physiotherapy you are getting, what exactly does she do? Dont ever feel guilty about doing what YOU want to do with your health and your body. In the end its you who pays, so its your decision. Hang in there and remember--these docs and therapist work for you--not the other way around. Maybe you could try someone else and see if the therapy goes better

Big Hugs Colleen

[Guest guest]

Ling, How are you feeling tonite?? You hang in there, ok?? Marsha

[Guest guest]

((((Ling))))

Please don't ever do or continue to do anything that makes you

uncomfortable as far as making you that sick.

I recently had a discussion about physical therapy on one of the

other lists that I'm on. I had told them that I know my body

well enough as to what I need for this particular problem but

then one of the girls said, " I disagree. You don't have

experience in PT to make that kind of statement. " And then I

came back with, " I may not be an expert in PT but I am an expert

on my body. " I have other reasons for why I won't do PT for

this particular problem in addition to the fact that this

problem doesn't require the services of a PT.

Even though my pain level seems to intensify every 2 years as

far as making my pain threshold much lower PT isn't something I

would take a chance on b/c I know that the pain can be quite

horrendous for a while before it gets better and that just isn't

an option for me.

Any way, enough about me. Hang in there sweetie and know that

you are in our thoughts.

=====

Kristy

http://www.geocities.com/sokokl/kristyspersonalpage.html

Hoping to be a nurse soon but for now just a Medical Secretary who does a lot of

learning from reading on the Net, books, my dr(s), as well as sharing my own

personal experiences.

__________________________________________________

[Guest guest]

Ling, hey there, we all are doing just fine, getting ready for Cristmas, I am having my folks over on the 25, in the afternoon, so I am cleaning house, like crazy, Amber said why bother, it will just get dirty again.LOL. Talk you soon.April says hi. Marsha

[Guest guest]

Hi Kristy,

Thanks so much for your sweet note, I really, really appreciate it! I'm

sorry if this was asked before, but what condition were you discussing about

that PT is recommended?

Ling

Re: Lousy day

((((Ling))))

Please don't ever do or continue to do anything that makes you

uncomfortable as far as making you that sick.

I recently had a discussion about physical therapy on one of the

other lists that I'm on. I had told them that I know my body

well enough as to what I need for this particular problem but

then one of the girls said, " I disagree. You don't have

experience in PT to make that kind of statement. " And then I

came back with, " I may not be an expert in PT but I am an expert

on my body. " I have other reasons for why I won't do PT for

this particular problem in addition to the fact that this

problem doesn't require the services of a PT.

Even though my pain level seems to intensify every 2 years as

far as making my pain threshold much lower PT isn't something I would take a

chance on b/c I know that the pain can be quite

horrendous for a while before it gets better and that just isn't

an option for me.

Any way, enough about me. Hang in there sweetie and know that

you are in our thoughts.

[Guest guest]

Hi Colleen,

Thanks so much for you advice and reply. That is really very nice of you.

The physiotherapist I am seeing now specialises in pain management. This is my second attempt in physiotherapy for my headaches actually. I stopped going in the first attempt as I was busy taking care of my mum at that time, and also that I feel the therapy was not helping much.

This second physiotherapist is really very different from the first one, in terms of character and therapeutic techniques used. I can tell she loves her work. I don't know... I actually have this phobia towards all medical professionals, but I think this very approachable therapist kind of make me open up to her. She is very sensitive towards her patients.

What actually happened was that when I first saw her, she tried to do some assessment and traction of my neck, and then realised that it was almost impossible to touch my neck at all. [i groan when people touch my neck or head]. So what she had been doing with me then was getting me to do all kinds of exercises to strengthen my muscles in the neck and spine, with the aid of biofeedback. However yesterday she decided to try some manual therapy [using her fingers to gently massage my neck]. However when I got up later I felt really sick.

I just want to get rid of my stupid mentality of hating to impose on others.

Ling

Re: Lousy day

LING Never be sorry about venting--thats the name of the game around here. Im not too familiar with the physiotherapy you are getting, what exactly does she do? Dont ever feel guilty about doing what YOU want to do with your health and your body. In the end its you who pays, so its your decision. Hang in there and remember--these docs and therapist work for you--not the other way around. Maybe you could try someone else and see if the therapy goes better Big Hugs Colleen

[Guest guest]

Hi Marsha,

Feeling better today, thanks for asking! Just the usual pain, but still can hang on without painkillers.

How have you been?

Ling

Re: Lousy day

Ling, How are you feeling tonite?? You hang in there, ok?? Marsha

[Guest guest]

Ling,

One of my female conditions.

=====

Kristy

http://www.geocities.com/sokokl/kristyspersonalpage.html

Hoping to be a nurse soon but for now just a Medical Secretary who does a lot of

learning from reading on the Net, books, my dr(s), as well as sharing my own

personal experiences.

__________________________________________________

[Guest guest]

Kristy,

Got it. Thanks.

Ling

Re: Lousy day

Ling,

One of my female conditions.

[Guest guest]

Cleaning house? That is not in our list of errands this year, :-) We should be getting our new apartment keys next Friday! Then we will be busy with renovations. So who is interested in keeping our present house clean?

Merry Christmas!

Ling

Re: Lousy day

Ling, hey there, we all are doing just fine, getting ready for Cristmas, I am having my folks over on the 25, in the afternoon, so I am cleaning house, like crazy, Amber said why bother, it will just get dirty again.LOL. Talk you soon.April says hi. Marsha

[Guest guest]

>

> I am in DRASTIC NEED FOR PRAYER I lost my house keys today when I was

> Going to the food bank. I don't care about the key but the thing I do

> Care about is I had some key chains on it that were sentimental and I

> Had my Celebrate Recovery chips on it and a key chain that a friend

> Gave me that passed away in 99 and one my kids gave me and I gave them

> Up for adoption in 2000. So it is irreplaceable. I put notices on the

> Free cycles and will keep an eye on the paper and be doing a lot of

> Praying but I think they are gone for good I retraced all steps and

> They were no where to be seen. Anyway I should go to bed. What a

> Wonderful end for a losy day! At least my week cannot get worse? I hope

> Not? So at least PRAY IT GETS BETTER. Thanks kim

>

HI KIM,your week will be good.I pray you get your keys back.

? Let the sun be your sparkle

And the wind be your song,

? Let the rain kiss your spirit,

Melt your sadness,keep you strong

? Let the moon promise morning

and your daytime linger long,

? Let the earth guide your Footsteps

To the place you belong?

FROM MY ONLINE FRIEND

CAROLYN

[Guest guest]

I hope you find them. Sue @> wrote: >> I am in DRASTIC NEED FOR PRAYER I lost my house keys today when I was > Going to the food bank. I don't care about the key but the thing I do > Care about is I had some key chains on it that were sentimental and I > Had my Celebrate Recovery chips on it and

a key chain that a friend > Gave me that passed away in 99 and one my kids gave me and I gave them > Up for adoption in 2000. So it is irreplaceable. I put notices on the > Free cycles and will keep an eye on the paper and be doing a lot of > Praying but I think they are gone for good I retraced all steps and > They were no where to be seen. Anyway I should go to bed. What a > Wonderful end for a losy day! At least my week cannot get worse? I hope > Not? So at least PRAY IT GETS BETTER. Thanks kim>HI KIM,your week will be good.I pray you get your keys back.? Let the sun be your sparkleAnd the wind be your song,? Let the rain kiss your spirit,Melt your sadness,keep you strong? Let the moon promise morningand your daytime linger long,? Let the earth guide your FootstepsTo the place you belong?FROM MY ONLINE

FRIENDCAROLYN betterbodybuddies/?yguid=137091429 http://www.peternoone.com.

[Guest guest]

Mike, I am so sorry for your frustration and depression over this. It is

depressing being sick, not being able to do anything. That's one reason

why some doctors prescribe antidepressants to those with CFS/FMS/ME

issues, even though the depression is not like the clinical type, just

because of the frustration of all the issues. I started with the fatigue

from several things (worst trigger was a bad flu, most likely a mono/EBV

episode that went undiagnosed and untreated in 1970 when a freshman in

college), a lot of food allergies that activated about that time. I was

napping a lot even as a child but had tons more energy that just sapped

away over the years after that flu virus. I have had lots of viruses

since and when tested in 2003 was positive for six that my doctor

treated with Valtrex (thank heavens for insurance back then as it would

have been $600/month). I now take lysine and grapefruit seed extract

(antivirals) daily plus a 2-3 dose of generic Valtrex as needed when I

feel my throat glands get swollen. I used to run a low-grade fever but

now just struggle with pain issues and tight, sore muscles all the time,

aching like I have the flu most every day all day long. I have learned

through trial and error and a lot of $$$ which supplements work for me

and my issues (I also have osteo-arthritis in my back, nasal and food

allergies, etc.).

There is usually not just one thing that causes the fatigue, there are

many things. Whatever it is, you need to rest as much as you can so your

body can heal. It's okay to say no to things that overdo your energy

levels. Most of us were high achievers before we became ill. Read as

much as you can, when you can, online and see if anything clicks with

you. Most of us have tried many, many supplements to see what works

before finding some answers, and some of us still struggle. Eat as pure

and simple a diet of foods as you can, stay away from processed foods,

diet sodas and sugars, no or few fast foods. Keep track of what bothers

you (a diary or journal) as it's hard to remember when you are so ill.

Most of us have or have had viruses that bother us or reactivate but

aren't contagious (like EBV-Epstein Barr Virus or mono, or a bad flu, or

several viruses) and make us feel like we have the flu all the time. It

strips your fun, your energy, your vivality, your desire to do anything

or get anything done. Some people understand, most don't although word

is finally getting around and doctors are finally understanding that it

isn't all in our head. It's okay to nap a lot (I have my doctor's

permission, Dr. Dantini from Florida, whom I found online). Most

of us have been to 15 or more doctors before we found someone who would

listen or work with us. There is NO magic cure, no magic supplement, but

there is hope and things do help.

Pace yourself, learn your body's rhythm and stick to it. If you get up

when you wake up, then do things for an hour or two while you have

energy, then need to nap again ~ do it. Most of us have a messed up

circadian rhythm. I used to be a morning person but now I have two good

hours then need a nap (could be a 15 minute nap, some days 1-2 hours).

There is a story out about 12 teaspoons of energy that you have for the

day ~ some days you use up all 12 before half the day is over, some days

you borrow from the next day, but there isn't extra and you get

overtired and sicker doing this. If you are having a good day, don't

overdo it or you will end up worse for several days. It's not permission

to be lazy (most of us aren't), and don't give up being active, just do

things in baby steps. Listen to what your body is telling you. I have to

go to bed about 10:30 PM if I have a busy day coming up, I can't get up

before 7:00 AM or I am off for days. When we visit or travel, we try not

to start until after lunch and use that day as a travel day. Sleeping in

different beds is hard, I don't eat right, drink enough water, sleep

enough, etc. when traveling so we limit our visits or make sure they are

long enough for me to rest before and after. If I have a busy day

planned, I rest more the day before and after or even several days if I can.

I hope this helps you know that we do understand and sympathize with

you. There are support groups in many areas but most of us are too tired

to go to them. I am blessed that my bosses where I work understand and

work around my energy levels and issues. I just cut my work time back

this year to only four days a week of part-time work (last year there

were weeks I worked six days in a row and it made me ill), although last

week I worked eight days straight since school was just starting and we

didn't have our student workers yet (I cook at a private boarding school

and I am also a supervisor for gate security attendants). I get two days

off and I will be resting up lots with 2-3 naps per day. I had most of

the summer off (another blessing as summer is usually my busiest time

when everyone else goes on vacation). Find things to do every day that

make you happy, whether it's a good book, a short walk around the place

where you live, sitting out in the fresh air, talking to a friend on the

phone, singing a song, writing a poem, watching a sunset, taking a hot

shower or bath, etc. Find a source of power for strength, whether it is

in Christianity or some other belief system. I am a Christian so I will

be praying for you to find strength, happiness and answers.

in La Selva Beach CA (near Santa Cruz)

58 year old female

On 8/21/2011 5:26 PM, mikem wrote:

>

> tired of not knowing what causes the fatigue. on disability so i can't

> afford supplements or even afford to go anywhere and do anything. i

> don't think my insurance covers any kind of specialist.

>

> if anyone can help i'm sure listening. you guys are way passed me in

> knowledge. half of what you're talking about i've never heard of.

>

> could be worse i guess. Mike

>

>

[Guest guest]

Mike,

I've had a rough weekend. I sure understand your frustration. Here's a site I've

found that I just love.

http://getwellfromme.com/

This guy gives me hope, and yes, everything says is true. You have to

listen to your body, and keep track of how you're doing. You can do a journal

online, if that's easier than writing everything down. I did somewhat in the

beginning, and I know that most days, I am better than when I started. Had

myself a good meltdown today though!

Wishing you a peaceful night, and a BETTER tomorrow!

--near Sacramento, CA

>

> tired of not knowing what causes the fatigue. on disability so i can't afford

supplements or even afford to go anywhere and do anything. i don't think my

insurance covers any kind of specialist.

>

> if anyone can help i'm sure listening. you guys are way passed me in

knowledge. half of what you're talking about i've never heard of.

>

> could be worse i guess. Mike

>

[Guest guest]

I echo what says----------key phrase is " pacing " . I know that sounds a

bit ironic for a person who seems to have no life, but ever so slowly, day by

day, intentionally getting ahead of the bad fatigue, will have a pay off.

Have you tried Epsom Salts baths??? Cheap and well worth effort.

NO sugars----get it NO!!

Have you tried coffee enema's-------great detoxer--------try daily for a month

for major results.

I used to average $10,000 out of pocket a year on alternative health

approaches-------each helped in small steps. I think my recent year and half

on major antibiotics helped the most.

Ask your GP to run some of the tests in Dr. Teitlebaums book, From Fatigue to

Fantastic.

Your at a good place just being here!!

God Bless,

Sara W.

> >

> > tired of not knowing what causes the fatigue. on disability so i can't

> > afford supplements or even afford to go anywhere and do anything. i

> > don't think my insurance covers any kind of specialist.

> >

> > if anyone can help i'm sure listening. you guys are way passed me in

> > knowledge. half of what you're talking about i've never heard of.

> >

> > could be worse i guess. Mike

> >

> >

>

>

>

>

[Guest guest]

mike ...go to the phoenix rising CFS message boards (forum) and start reading.

those people are very knowledgable and are trying lots of experimental

treatments:

 

http://forums.phoenixrising.me/

 

 

From: mikem <magikleppard@...>

Sent: Sunday, August 21, 2011 8:26:20 PM

Subject: lousy day

 

tired of not knowing what causes the fatigue. on disability so i can't afford

supplements or even afford to go anywhere and do anything. i don't think my

insurance covers any kind of specialist.

if anyone can help i'm sure listening. you guys are way passed me in knowledge.

half of what you're talking about i've never heard of.

could be worse i guess. Mike

[Guest guest]

Mike,

This forum as well as Phoenix Rising are experimental groups - There are other

groups that are support or medical but not as experimental (Like ProHealth).

It is easy to get lost in an experimental group as there are no other places to

catch those conversations so it feels like you are missing something. You are

not. Just stay with the conversation and you will start to pick it up and

always ask questions.

Another useful thing to do is to search the archives of this forum and any other

forum. There is a wealth of information in the posts from years past. This

forum goes back to '98. Phoenix rising doesn't go back that far but it goes back

several years. The interface is easier to use than this group but both

have value.

All of the advice you have been given is good advice. Changes are seen slowly

over time. The more you do then crash, the longer you are in a fatigued state.

Our bodies have a difficult time recharging ATP so it is best not to get to that

level. This has been the hardest thing for me to do but the most beneficial.

The " no sugar " is good advice as is " low carbs " . Coffee enemas - check.

Reducing inflammation - knowing what allergies you have, taking

anti-inflammatories - natural or otherwise.

Usually we have POTS symptoms so increase your water and sodium.

It is easier for us to help you if you pick the problem that is plaguing you the

most and ask a question. We can then direct you to some possible solutions or

explain the reasons behind the problem so you can understand what is happening

with YOUR body (we are all a little different).

Then when that issue is better managed, you can focus on the next biggest

problem. Over time, you will find a higher level of functionality.

Hope we can help you,

Marti

>

> mike ...go to the phoenix rising CFS message boards (forum) and start reading.

those people are very knowledgable and are trying lots of experimental

treatments:

>  

> http://forums.phoenixrising.me/

>  

>  

>

> From: mikem <magikleppard@...>

>

> Sent: Sunday, August 21, 2011 8:26:20 PM

> Subject: lousy day

>

>

>  

>

> tired of not knowing what causes the fatigue. on disability so i can't afford

supplements or even afford to go anywhere and do anything. i don't think my

insurance covers any kind of specialist.

>

> if anyone can help i'm sure listening. you guys are way passed me in

knowledge. half of what you're talking about i've never heard of.

>

> could be worse i guess. Mike

>

>

>

>

>

[Guest guest]

thankyou and .  boy, a gate security attendant would be a dream

job, something i could do even with CFS.  do you have to be a licensed security

guard to do that?