New here

[Guest guest]

“A Private Investigator eh? COOL…maybe a second career writing

mysteries(?),”

, I’d love to hear more about your ‘second career’. I’m just finishing

up a mystery novel of my own (my ‘home in bed’ project from last winter),

whose heroine has CFS & MCS. She has to keep finagling her friends and her

spouse into doing the active sleuthing for her while she stays home away

from chemicals, germs and general over-stimulation.

Lurker Jayne

Canadian, 20-year CFS survivor

[Guest guest]

Hi Sandrea,

I am already feeling the negative effects of the steroids. I started taking

5 mg. last Tuesday. On Friday I started feeling tired and ill and I

remembered that I was suppose to increase the steroid to 10 mg. I felt

great until Sunday night when I felt so very tired with my migraine worse.

Yesterday I had a bad migraine all day and started to feel nausea. I fell

asleep at 6:00 PM and slept until 10:30 PM. So I guess you would need to

keep increasing the steroid every few days to keep it working. My Doctor

only gave me a week to take it with today being the last day. I feel very

weepy and sad. I don't want to go back into the " dark " again. I know that

the steroids are not the answer but taking them makes so very much more

aware of just how ill I am. My family was so happy and excited that I was

in the land of the living and I feel bad that I am not going to stay for

them. This illness is horrible and I guess I didn't realize how much of

life I was missing until I took these steroids. I know the risks outweigh

the benefits but I want to fight this thing now more as I have seen the

difference.

Yes, I know the spinal tap will be painful especially as I am intolerant of

local anesthetic. They have two MRI's of my brain from last year. They did

them six months apart. I don't know why they did them so closely? What is

strange is my ex-husband has MS and I read that MS may come from a virus.

While we were married he had EIGHT blood transfusions. (long story) That

was before they checked the blood so I sometimes wonder.

Is there a test to test for adrenal fatigue? I know that everything

relating to CFS seems to point to the adrenal glands, as of last week's

steroid study.

If everything points to the adrenal glands why can't the help CFS sufferers?

Thanks for your input.

[Guest guest]

Hi ,

Thanks for the information. I don’t think that is a cure now and I can see

how long term use could turn life threatening. I will also use it only for

emergency use.

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Getter

Sent: Monday, November 26, 2007 7:30 PM

To: CFAlliance

Subject: Re: New here

Hi ,

Pred can be a very scary drug, I refer to it as " making a deal with

the devil " , I have personally dealt with life theatening side effects

having my BP skyrocket into near stroke, not to mention that it can

cause bone loss, weight gain (I put on 45 lbs), hair growth, night

sweats, vision loss and much more.

[Guest guest]

Hi , I’m so sorry that your relief had a big price tag. It’s so

upsetting to have a glimpse of feeling better but not being able to sustain

it. The thing is, when you boost yourself artificially, you also wear

yourself out doing more than you should, and often end up in worse shape.

BUT (and it’s a big but) it just shows that there is possibility for

improvement and perhaps the right thing will come along for you.

Mainstream docs usually don’t acknowledge adrenal fatigue, you would have to

consult with a naturopath or other alternative practitioner to test it and

figure it out. There are herbs and nutrients that you can take. But, the

most important thing is low stress, don’t overdo, good rest and

nutrition…all the basics.

I know it’s so hard, but hang on to that feeling of well being and pull out

the memory on hard days…and have hope that you may find this again, and

someday feel that good all the time, naturally. TC, Aylwin xox

[Guest guest]

Hi , I’m so sorry that your relief had a big price tag. It’s so

upsetting to have a glimpse of feeling better but not being able to sustain

it. The thing is, when you boost yourself artificially, you also wear

yourself out doing more than you should, and often end up in worse shape.

BUT (and it’s a big but) it just shows that there is possibility for

improvement and perhaps the right thing will come along for you.

Mainstream docs usually don’t acknowledge adrenal fatigue, you would have to

consult with a naturopath or other alternative practitioner to test it and

figure it out. There are herbs and nutrients that you can take. But, the

most important thing is low stress, don’t overdo, good rest and

nutrition…all the basics.

I know it’s so hard, but hang on to that feeling of well being and pull out

the memory on hard days…and have hope that you may find this again, and

someday feel that good all the time, naturally. TC, Aylwin xox

[Guest guest]

Hi ,

I am so sorry that you are having issues with the steroids, but it is

good that you are not going to take them long term as they really are

harmful. You might ask about trying a drug called Provigil. It seems

to work for some people and it is not dangerous in the way amphetamines

are. I don't know more about them though. I don't blame you for

wanting to be in the land of the living. This disease sucks. The thing

to consider is that for many just in the beginning stages of CFS, you

sleep all the time. But at some point this ends and changes and then

you have trouble sleeping and are up even though you need to sleep. So,

perhaps look at this as a phase to get through and honor and hopefully

once your body has enough sleep then you might improve. As far as

testing adrenals, yes, there are two tests. Medical doctors test

adrenal gland function through a certain blood test. The test measures

your function at one specific time of day and gives overall function

results. With the results, if you are in complete adrenal failure you

are diagnosed with 's disease and given prescription cortisol.

If you are not in total complete, not working at all adrenals, then

medical doctors do not acknowledge there is a problem. On the other

hand, other practitioners, such as a naturopath, acknowledge something

called adrenal fatigue. This is where the adrenals function, but not

well enough and there is a whole range of how well or badly they

function. There is a saliva test to measure adrenal function in which

you spit in individual containers at four specific times during the day.

So, for example, I had my endocrinologist do the blood test and he says

I'm fine. My naturopath ordered the saliva test (which my endo doesn't

think is accurate). Based on the saliva test I have overall the right

amount of cortisol in my body, which confirms the results of the blood

test. However, I have not enough cortisol in the am and mid day and

then too much cortisol in the late afternoon and middle of the night.

This is the reverse of how is should be. You are supposed to have more

cortisol in the am and mid-day and then drop off towards evening and

night time. Too much at night explains why I have trouble sleeping.

So, the saliva test is a lot more informative than the blood test. Do I

need prescription cortisol, no according to the doc. My naturopath said

since overall I have enough, taking more could be harmful, but on the

other hand, taking some at a particular time of day might be helpful but

he doesn't know. He recommended against it.

Sandrea

[Guest guest]

Hi ,

I am so sorry that you are having issues with the steroids, but it is

good that you are not going to take them long term as they really are

harmful. You might ask about trying a drug called Provigil. It seems

to work for some people and it is not dangerous in the way amphetamines

are. I don't know more about them though. I don't blame you for

wanting to be in the land of the living. This disease sucks. The thing

to consider is that for many just in the beginning stages of CFS, you

sleep all the time. But at some point this ends and changes and then

you have trouble sleeping and are up even though you need to sleep. So,

perhaps look at this as a phase to get through and honor and hopefully

once your body has enough sleep then you might improve. As far as

testing adrenals, yes, there are two tests. Medical doctors test

adrenal gland function through a certain blood test. The test measures

your function at one specific time of day and gives overall function

results. With the results, if you are in complete adrenal failure you

are diagnosed with 's disease and given prescription cortisol.

If you are not in total complete, not working at all adrenals, then

medical doctors do not acknowledge there is a problem. On the other

hand, other practitioners, such as a naturopath, acknowledge something

called adrenal fatigue. This is where the adrenals function, but not

well enough and there is a whole range of how well or badly they

function. There is a saliva test to measure adrenal function in which

you spit in individual containers at four specific times during the day.

So, for example, I had my endocrinologist do the blood test and he says

I'm fine. My naturopath ordered the saliva test (which my endo doesn't

think is accurate). Based on the saliva test I have overall the right

amount of cortisol in my body, which confirms the results of the blood

test. However, I have not enough cortisol in the am and mid day and

then too much cortisol in the late afternoon and middle of the night.

This is the reverse of how is should be. You are supposed to have more

cortisol in the am and mid-day and then drop off towards evening and

night time. Too much at night explains why I have trouble sleeping.

So, the saliva test is a lot more informative than the blood test. Do I

need prescription cortisol, no according to the doc. My naturopath said

since overall I have enough, taking more could be harmful, but on the

other hand, taking some at a particular time of day might be helpful but

he doesn't know. He recommended against it.

Sandrea

[Guest guest]

Hi,

No, second career as of yet; I would love to write a book but I get too

tired quickly. Maybe if I set the publishing date at 2050 I would be okay!

:-)

It sounds like your novel would be a two part story of “Survivor” and

“Sleuthing”! I’m just working on the first part for now but it would be

interesting to follow a case from home though I use to be a control freak,

still am, so I would probably end up overly anxious and fall asleep on

everyone when I didn’t get the right results or answers. End of Case.

Take care,

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jayne Barnard

Sent: Tuesday, November 27, 2007 11:32 AM

To: CFAlliance

Subject: Re: New here

“A Private Investigator eh? COOL…maybe a second career writing

mysteries(?),”

, I’d love to hear more about your ‘second career’. I’m just finishing

up a mystery novel of my own (my ‘home in bed’ project from last winter),

whose heroine has CFS & MCS. She has to keep finagling her friends and her

spouse into doing the active sleuthing for her while she stays home away

from chemicals, germs and general over-stimulation.

[Guest guest]

Hi Sandrea,

I was seeing double by the time I read your email. Why can’t the Doctors

just do what they are supposed to do or look for it? I can hardly remember

what happened to me yesterday let alone retain all this information.

I can’t take Provigil as I have Mitral Valve Prolapse with arrhythmias. I

drink coffee and keep moving when I really need to stay awake. I can still

fall asleep with a pot and a half in me though so it doesn’t work that

great. It’s amazing that the only thing that 100% worked were the steroids.

Take Care,

[Guest guest]

“The thing is, when you boost yourself artificially, you also wear yourself

out doing more than you should, and often end up in worse shape.”

That is very, very true, and something I wish had been drilled into me by

the first doctor to diagnose my CFS back in ’92.

Instead he told me there was no known treatment and sent me home.’ I went

along for years doing everything I could to keep going physically and

financially, instead of giving my body what it needed most: rest. Who knows

if I’d be this sick now if I had simply been able to rest instead of those

two-plus years of prednisone (which, by the way, felt wonderful to me at the

time; sorry it’s not helping you, ).

Could I, a mere newbie, ask a favour? Could people please put separate their

posts into short paragraphs instead of one long one? After about ten lines

my eyes get so tired that the letters all blur together. I’m probably

missing vital information by having to skim past the posts that are all one

long paragraph.

Thanks,

Jayne

[Guest guest]

Hi Jayne, yes, I think the same…if I had been advised to simply go to bed it

would have made all the difference. But still, as a single parent of 2 small

kids when I got ill, I don’t know how I would have done it anyway. As it

was, I slept every minute they were at daycare as well as at night, and got

heavy servicing from social services too…out of school care, homemakers etc.

And I am sorry to be one of the worst perps of typing long paragraphs…and I

will work to make them shorter! TC, Aylwin xox