Re: CFS Severity?

[Guest guest]

That is a very good question! I developed CFS at the

age of 19 while in college and am now 36. It used to

be the worst thing I could ever imagine going through.

Now for me my FMS and MPS is much worse than the CFS

but my RA is way worse than my FMS! I do get alot of

fatigue with both of the other conditions though as

well

--- Paresh wrote:

> Good questions. I think cfs may be more than one

> condition...different for each of us. Certainly

> there is a lot of variance in symptoms from one

> person to another.

[Guest guest]

Hi Kulia:

My son was stationed in Hawaii. I believe that's where you live?

The Prozac 90 mg work better than a lower dose. It is time released capsule

so it constantly evens out through the week. In November I had talked to my

doctor about lowering the dose and trying to go off it completely. I was always

happy when I was on it so I didn't think I needed it anymore.

So in November we did the 20 mg and it was liquid as it was easier to titrate.

I stayed on that same dose for 2 weeks. Then I went to the next lower dose of

10 mg. I had still been on that when I called my doctor last Monday and said I

want to go back to my once weekly. Being on a lower dose caused me to be more

edgy and not able to deal with things.

So after starting back on the once weekly, it kicked back in the following

day, I saw a tremendous improvement emotionally. It was like something was

lifted off. It felt great.

Lou

kuliaola2000 wrote:

Hi,

For my depression and anxiety I see a therapist and take vallum as

needed for pain, anxiety, and depression. It's a muscle relaxant. I

try to take it very sparingly as I've had heavy metal poisoning have

MCS Multiply Chemical Sensitivity.

[Guest guest]

Dear CF Alliance Group,

I have had ME for 25 years and my son was born 20 years ago.

At age 10 he started showing some of my symptoms...with the exception of his

severe migraine type headaches.

He has not received an official dx of fibro but one dr wanted him to some back

in to discuss it further...it may be in his records. I will find this out. He is

working now fulltime and has those headaches and doesn't feel good on days

off.(which may be more a fever but he doesn't have a frame of reference).

Does anyone have children who have possibly inherited this? Other than the cfids

web site do you know of other informative information for children young adults

who have been born with this?

Thank you,

Cin

Please delete my email from the subject line or body of a response. Thank you so

much.

<))><

[Guest guest]

Hi Everyone!

I agree that staying in your energy envelope is critical!!! To do this

I have had good results from this system: For each of your usual

activities assign a point value based on how tired it makes you. Then

give yourself a budget of how many points/day you can use without

worsening your symptoms. It's kind of like the weight watchers

system, only you budget activity instead of calories. As you get more

experienced or healthier you can adjust the point values or budget.

Feel better, everyone!

[Guest guest]

Cin,

I didn't have CFS when I was a child -- I was more laid back than many,

loved to sit at home and read just as much as going out to play, had a

number of severe infections, but I also had a full high school and college

life doing ballet, theater, church activities, working and getting ready to

get married. I didn't really start feeling CFS type symptoms until I was

about 41 or 42, and didn't really get seriously impaired until 46.

The point of all that is to explain that although I didn't show any signs of

it until mid-life, I definitely inherited it from my mom. She has had

CFS/FM for all of my life, and probably most of her adult life, of course in

her day it was diagnosed as rheumatoid arthritis, anemia, etc. Her mom had

what I would probably diagnose as CFS as well, judging by my mom's

description (I never knew her.). I don't know how far back it goes before

that. So it has definitely been passed down through the maternal line in my

family.

I don't know how close this is to what you're looking for, but hope it

helps.

S.

[Guest guest]

Hi Cin, well I believe that Dr. Bell has based a lot of his work on

kids…I think his site is the Lyndonville News. He is a true fighter and

helper and researcher, who first encountered ME in a children’s epidemic in

the early (I think) 80’s – check it out anyway. My son contracted it from me

and was bedridden for 3 years…but he has made a pretty well full recovery,

though he does have allergies and ADHD. He doesn’t even remember it.

Actually, my daughter, who didn’t get ME, has had migraines all her life.

TC, Aylwin xox

Dear CF Alliance Group,

I have had ME for 25 years and my son was born 20 years ago.

At age 10 he started showing some of my symptoms...with the exception of his

severe migraine type headaches.

He has not received an official dx of fibro but one dr wanted him to some

back in to discuss it further...it may be in his records.

[Guest guest]

Yes, it’s a good system unless your “energy envelope” is too small for

things like getting up or getting food or washing…especially when you live

alone. Certain things must be done, and I trigger symptoms every day but

just surviving. I already have a caregiver to do the shopping and housework,

that I have to pay. I’m just saying that this works much better for the more

mildly affected. Pre huge relapse/progression, this system worked well for

me, for the most part. But also, thing happen like parents getting ill and

other life events, that must be dealt with and throw the system out the

window. Not trying to be negative here, just wanting to point out that what

the more ill need is support and care, ie. to reduce the activity load for

us that is not provided in our HC system. Aylwin xox

_____

Hi Everyone!

I agree that staying in your energy envelope is critical!!! To do this

I have had good results from this system: For each of your usual

activities assign a point value based on how tired it makes you. Then

give yourself a budget of how many points/day you can use without

worsening your symptoms.

[Guest guest]

Hi,

My name is Jane and I live in Berkeley CA. I can really relate to the posting

I just read. I don't qualify for the government to pay for a caregiver, and

must pay for an attendant as little as possble due to my limitted funds. I am

single and it's very hard...luckily I have a friend who helps with some things.

This year the CDC will be doing education on CFS. I would think it great if

we could get OPRAH to due a show on CFS. Because I " LOOK " " NORMAL " I don't get

visits or help from folks. Then I see others with more recognized conditions

get help, visits, and empathy. A recent ex friend told me she thought it was

mostly in my head and I should just get a life!

1) With the CDC campaign -Perhaps we could get folks to donate funds to help

those with CFS individually (A charity giving to individuals, not research)

I would also like to bring up the issue of dating. My ex husband left me

years ago when I became ill. Where I live folks are doing 2 activities a day.

Are there any people on this site who got a partner AFTER having CFS? Seems

there should be some folks out there who enjoy a more sedentary

lifestyle....especially at my age ( a young senior)

Jane

[Guest guest]

Hi Kulia:

I'd be glad to share about my diagnosis. I became sick in 1998 with CFS and

it hit all at once. I did not see Dr. Bell till 2003 and he diagnosed me right

away. I was afraid it would be a waste of money traveling to see Dr. Bell if I

didn't have CFS.

Dr. Bell has been a big help as he has explained alot of stuff to me. He has

explained about why I had heart palpitations only when laying down to go to bed

and not any other time. He has done the low blood volume test on me. He has

done the orthostatic testing with me.

He has done all my paperwork so I was able to get disability. He has also

explained why CFS patients do better when laying down. He has explained why the

heat outside bothers me.

I have truly learned so much. Dr. Bell also told me that MOST CFS patients

need to be on anti-depressants. I told him the dose I was on--once weekly

Prozac and he said that's fine.

I can't remember what else I have learned. If you want to know anything, I

might have an answer, but not sure.

I got sick when I was 38. Dr. Bell said mine was not due to environmental

issues. My CFS is due to stress in the body. There's two different types.

Either stress, trauma and things like that or the environmental and things of

that type. He also said since I've had CFS more than 5 years, I will never

recover.

He said my CFS has always been the same and I've never had a relapse. It's

always severe. So when I dropped to the lower dose, I became edgy and

irritable. My fatigue was so overwhelming that I wasn't coping. My husband had

noticed the difference after I dropped to a lower dose. I had noticed it later

on. I didn't like the change and I wanted to go back on the higher dose. I

couldn't even do the simple things I always did on my higher dose because of the

fatigue.

Lou

[Guest guest]

Hi Meghan:

Dr. Bell is not taking new patients. He is in Lyndonville, NY up near Canada.

Lou

[Guest guest]

Even those with more recognized conditions have to fight to get their

needs met. I suspect there is significant bias against the disabled no

matter the diagnosis.

Any questions ask, I'm not shy. Take care of you.

Big gentle huggles,

Di in Feasterville-Trevose, PA )

dimntd on AIM, IRC, ICQ & Yahoo! Messenger

findjane@... wrote:

> Hi,

> My name is Jane and I live in Berkeley CA. I can really relate to the

posting I just read. I don't qualify for the government to pay for a caregiver,

and must pay for an attendant as little as possble due to my limitted funds. I

am single and it's very hard...luckily I have a friend who helps with some

things.

>