wondered if their was anyone in a similair position as me.

[Guest guest]

Hey,

my fiancee is 20 we have been best friends for 3 yaers before we got

together she has been diagnosed with cfs/me since march 2007 and has

recently got a lot worse. bassically she lives with her parents as we

cant move out until she is at a stage where she is ready. but now it

is so bad and i can only see her an hour a day and have a busy

schedule so dont get to see her. i wondered if anyone else was in a

similair situation and tips on what we can do to be close but still

deal with this illness .

[Guest guest]

Hi -

I was at a very similar stage at around age 20 - I had

CFIDS as well as fibromyalgia pretty bad. I don't

have the type that keeps me bedridden, though - just

severe sensation of fatigue that I always sortof

adapted to, and a lot of cognitive issues. It sounds

like she may be in bed a lot?

First and foremost, finding a doctor who specializes

in treating CFIDS would be a priority. I didn't get

treatment, though, and I still got much better by the

time I was about 27 - I discovered most of my symptoms

were going away. I had a relapse in my early 30s and

at almost 39, I'm not at my best after a few years of

chronic strep ... but I've adapted so well that I'm

not always aware that I'm in a flare.

I would recommend that you stay compassionate and

don't push. Is she comfortable enough at home, or is

her home - being with her parents - a significant

emotional stressor? Emotional stress and anxiety is

always a big big trigger for me. I urge a very low

dose of SSRIs and anxiety meds (clonipin is very easy

to come by for treating cfids, but alprozolam is

better if there's not a risk of abuse or addiction).

These are really an important part of treatment and

SSRIs have a mild immune modulating effect as well as

help w/the neuroeffects of the illness. At her age,

this is very frightening and hopelessness can set in

.... but she needs to know that recovery is possible

and can even be rather spontaneous.

Diet changes are important and helpful for many - low

allergy, easy to digest, and low carb, low sugar. I

find that salami (sortof predigested by lactic acid

process) gives me more energy than any other food.

Limit or give up all dairy, stay off sugar, no nuts,

no whole grains - especially whole wheat - can be very

helpful, as when the immune system is out of whack,

these set it off even more.

My husband was dating me while I was in full-blown

CFIDS too. I had eating problems - a real aversion to

food because it tended to make me feel worse, but I

could eat (and thrive on) eggs, so every morning

before he went to his senior year in high school, he

brought me a scrambled egg sandwich to work and then

called a coworker to make sure I ate it. Sweet,

huh? He just consistently made sure I ate just a

little (not an easy thing - thinking of food made me

nauseas - probably had eosphageal candidosis back

then), and while he didn't totally understand my

fatigue, my constant pain, why doctors couldn't help,

and why I wouldn't eat, (not to mention I had severe

anxiety and was hyper and my mind was all over the

place lol), he just accepted that as part of the

package. Dating was hard the first couple of years

because my mom had some major issues and I was taking

care of her too, but we just hung in there.

New love hurts when you're apart. Things WILL

improve, and you can study and work and talk together,

and you can help her access good support. Read up on

supporting a loved one w/CFIDS, educate yourself on

the illness, go to Co-cure.org, look and read anything

written by Klimas MD - an expert in CFIDS and

highly respected mainstream researcher ... don't fall

into all the alternative medicine traps - they never

helped me no matter what. Read " The Virus Within "

(but don't let it terrify you - just understand how

research works), and " Osler's Web " .

Dr Klimas has good info regarding exercise

programs for severe CFIDS patients - and she has 30

years of experience, so you can trust it. You can

help her by studying those too. Exercise w/CFIDS?

Really? Yup. But in a very careful way. Rebounders

(trampolines) help regulate the system - used lightly,

and light easy pilates to help strenthen the core, and

very light muscle exercising in 5min on, 5 min rest

increments is useful.

Mostly, don't let CFIDS so define your relationship

that you forget to just be friends, and don't assume

that what is happening right now is always going to be

this way. I wish I had had access to the info I've

learned in my later adulthood back then - but I've

made it through alright and had lots of fun along the

way.

Best of luck-

--- p4ddybb <paddybuck@...> wrote:

> Hey,

> my fiancee is 20 we have been best friends for 3

> yaers before we got

> together she has been diagnosed with cfs/me since

> march 2007 and has

> recently got a lot worse. bassically she lives with

> her parents as we

> cant move out until she is at a stage where she is

> ready. but now it

> is so bad and i can only see her an hour a day and

> have a busy

> schedule so dont get to see her. i wondered if

> anyone else was in a

> similair situation and tips on what we can do to be

> close but still

> deal with this illness .

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

hey cynthia

thanks for taking time to reply to my message . im glad that you

got out of the bad stages of the illness .

Bassically she is already getting treatment she is seeing the top

specialists and the ocuppational therapist in the region.

her parents really look after her as she is bedridden pretty much all

the time at the moment. but i find it gets hard for her at home so

she is currently away with at her brothers house for a month

i wrote my first message when i was really down after seeing her at

probably the worst id seen her and not knowing what to say.

the part that really hit home about your message was the

" Mostly, don't let CFIDS so define your relationship

> that you forget to just be friends, "

i think that that is the part i have to really take in and not forget

about.

again thankyou

---paddy - - - - --

>

> > Hey,

> > my fiancee is 20 we have been best friends for 3

> > yaers before we got

> > together she has been diagnosed with cfs/me since

> > march 2007 and has

> > recently got a lot worse. bassically she lives with

> > her parents as we

> > cant move out until she is at a stage where she is

> > ready. but now it

> > is so bad and i can only see her an hour a day and

> > have a busy

> > schedule so dont get to see her. i wondered if

> > anyone else was in a

> > similair situation and tips on what we can do to be

> > close but still

> > deal with this illness .

> >

> >

>

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Hi,

I stumbled on your posting today and just wanted to check in and see how your

fiance was doing? I am 30 years old and have fibromyalgia CFS. I am seperated

from my husband and have small children. I have been feeling very terrible these

past couple of weeks and I wanted to tell you that I am very glad that you are

standing by your fiance. The best advice I can give anyone to cope with this is

" support " . I being in your fiance's situation would want my fiance at my side

for just support. I know for me it is very frustrating to feel the way that I

do. I am 30 years old but I feel like I am 60.

I used to be so full of energy, playing with my kids, etc., now I just want to

lay down and not move due to the pain.

I know it must be hard to see her when she is feeling at her worst, but try to

do what you can to be there for her by leaving her little notes, calling her on

the phone, bringing her something to eat. Just little things to help her feel a

little bit better.Unfortunately, my husband could never understand my condition

and he felt like it drained him emotionally. The best thing I think people could

do is try to educate themselves in order to try and understand the condition.

For many CFS sufferers it is very frustrating. What has always helped me is

having people around me for moral support. I am very thankful that I found this

group, because I have people who respond to me whenever I may have a question or

concern. People who are going through similiar situations. I also have a child

with autism, so this site has been a major blessing.

Anyhow, I hope things get better for the both of you and good luck with your

engagement. Both of you hang in there and like you have already been told. Don't

let this defeat you. As terrible as I feel I have loved ones that I keep

fighting for. Take care, God bless, May

---- p4ddybb <paddybuck@...> wrote:

> Hey,

> my fiancee is 20 we have been best friends for 3 yaers before we got

> together she has been diagnosed with cfs/me since march 2007 and has

> recently got a lot worse. bassically she lives with her parents as we

> cant move out until she is at a stage where she is ready. but now it

> is so bad and i can only see her an hour a day and have a busy

> schedule so dont get to see her. i wondered if anyone else was in a

> similair situation and tips on what we can do to be close but still

> deal with this illness .

>