Re: recovery from CFS?

[Guest guest]

There are cases of people recovering after a short time, say 2 years. But, most

don't, unfortunately. My observation has been those cases that have a short

duration are milder but I think the patients should always be careful of their

health so as to avoid relapse.

After taking the precautions my doctor recommended: avoiding stress - even happy

stress, eating a very healthy diet, getting sleep as best you can, and

exercising in great moderation I have found I can manage the fatigue better.

But, the best thing is to learn to listen to your body and give it what it needs

to eat and sleep and moving about, and learn to stop doing something at the

instant your body says it's had enough. Even a half cleaned kitchen is better

than a big payback.

[Guest guest]

Marilyn,

I don't post very often, just happened to check in. I'm sure you'll get many

replies.

From my experience, I would say that it's a coincidence that both women you met

recovered after two years.

There is certainly hope of recovery! The stress reduction, learning to pace

yourself, etc. are all very helpful. To me,the most important thing is not to

keep pushing yourself. The temptation is to do a lot when we have " good " days,

then " crash " . I believe this can delay recovery. But the " pacing " part is not

easy, but you can learn to do it! You may have Fibromyalgia, or Fibro and CFS.

If you have only fibro, you may be able to tolerate more exercise--such as

gentle yoga, stretching, swimming, etc. (You might be able to do this with CFS,

too...for both conditions you may need the guidance of a good physical

therapist/or doctor).

For me, learning to meditate/relax has been very helfpul. Also certain kinds of

massage and a change in diet. Some medications can help with the pain, etc. It's

different for everyone. The important thing is to learn to listen to your body,

trust yourself, be kind to yourself and your body and don't push yourself. Learn

to ask for help if that's hard for you. Learn to say " no " if you must. Don't try

to do everything the way you did before the illness. Don't " tough it out " --and

stay hopeful and believe in your body's power to heal itself.

And all of us are here to support and encourage you! You're lucky to get an

early diagnosis. I didn't have a clue what was wrong with me for years and kept

trying to do everything...

All the best,

Theresa

[Guest guest]

Hi Marilyn

Im new to cfs too so its interesting that people you know have had it fade

away in 2 years but reading other peoples lives i dont think this is true for

everyone, I have a friend who has it too she has had it for 4 years and symptoms

come and go.

Then another lady i know has had it severly for 14 years and is bed bound at

times, its really hard to put a time on this illness.

but iam not a professional so i dont have all the answers just the knowledge

from people i know.

Good luck

sandy

[Guest guest]

I understand if you are going to recover it is usually within the first five

years, I am sure it varies but they say the longer you are sick the less

likely you are to recover and that it is really important if you are just

diagnosed to take really good care of yourself. Get a GOOD doctor if that is

possible, they are hard to find.

Good luck,

Cat

In a message dated 8/16/2006 4:09:07 PM Pacific Standard Time,

sandybuffymeg@... writes:

Hi Marilyn

Im new to cfs too so its interesting that people you know have had it fade

away in 2 years but reading other peoples lives i dont think this is true for

everyone, I have a friend who has it too she has had it for 4 years and

symptoms come and go.

Then another lady i know has had it severly for 14 years and is bed bound at

times, its really hard to put a time on this illness.

but iam not a professional so i dont have all the answers just the knowledge

from

[Guest guest]

Thank you to everyone who wrote in. Your answers were just as I suspected,

that I can't put a timeline on these things, and have to just pace myself and

take it one day at a time. Thanks for being here, and for allowing me to " vent "

to someone who knows how this feels. If I may, I will provide a little more

detail: (Forgive the length of this, and all my questions. You all can pick and

choose what you'd like to answer. Thanks!!)

I have bad days and worse days, but I haven't had a pain free, energetic day

since before I came down with the flu that started this last winter. My husband

is wonderful and understanding, but he does not understand how it feels to be in

constant pain and fatigue, although he does try. I try not to complain as much

as I used to, and I think it has helped things be more peaceful in my home (we

have 3 small children), and I seem to even feel better when I allow my outlook

to be brighter.

I am trying to cope with thins without prescription medications, and I'm

hoping to keep treating the symptoms naturally, with lifestyle changes and

supplements, and the occasional use of Tylenol, Advil or Aleve. From reading the

posts so far on this board it seems like many are trying the natural route as

well. Any suggestions on supplements, etc?

I have not had an official diagnosis; it was basically process of

elimination. My doctor concluded that I have " post viral syndrome " , which I

researched and saw that CFS and ME are synonomous with it. At least once a week

someone (including two nurses) has advised me to get retested for Lyme disease,

saying that the blood tests are unreliable. I do not have swelling in my joints

like most with that disease, but I do have strange numbness in my face and toes

at times, chest pains and a multitude of other aches and pains that come and go.

At one point, I thought I had MS or diabetes (which I was tested for) Does

anyone else have numbness and/or nerve trouble.? And what do you think about the

Lyme disease possiblity?

Also, the only thing I did test positive for was a rhuematoid factor in my

blood. Does anyone have any opinoins or experience with that?

Again, sorry for the length of this, LOL. As I said before, I have alot of

questions! Thatnks so much, you guys are great.

: ) Marilyn

[Guest guest]

Thank you to everyone who wrote in. Your answers were just as I

suspected, that I can't put a timeline on these things, and have to

just pace myself and take it one day at a time. Thanks for being

here, and for allowing me to " vent " to someone who knows how this

feels. If I may, I will provide a little more detail: (Forgive the

length of this, and all my questions. You all can pick and choose

what you'd like to answer. Thanks!!)

I have ok days, bad days and worse days, but I haven't had a

pain free, energetic day since before I came down with the flu that

started this last winter. My husband is wonderful and understanding,

but he does not understand how it feels to be in constant pain and

fatigue, although he does try. I try not to complain as much as I

used to, and I think it has helped things be more peaceful in my

home (we have 3 small children), and I seem to even feel better when

I allow my outlook to be brighter.

I am trying to cope with thins without prescription medications,

and I'm hoping to keep treating the symptoms naturally, with

lifestyle changes and supplements, and the occasional use of

Tylenol, Advil or Aleve. From reading the posts so far on this board

it seems like many are trying the natural route as well. Any

suggestions on supplements, etc?

I have not had an official diagnosis; it was basically process

of elimination. My doctor concluded that I have " post viral

syndrome " , which I researched and saw that CFS and ME are synonomous

with it. At least once a week someone (including two nurses) has

advised me to get retested for Lyme disease, saying that the blood

tests are unreliable. I do not have swelling in my joints like most

with that disease, but I do have strange numbness in my face and

toes at times, chest pains and a multitude of other aches and pains

that come and go. At one point, I thought I had MS or diabetes

(which I was tested for) Does anyone else have numbness and/or nerve

trouble.? And what do you think about the Lyme disease possiblity?

Also, the only thing I did test positive for was a rhuematoid

factor in my blood. Does anyone have any opinoins or experience with

that?

Again, sorry for the length of this, LOL. As I said before, I

have alot of questions! Thatnks so much, you guys are great.

: ) Marilyn

[Guest guest]

Hi Marilyn

That is what is great about this forum...everyone here can relate and I have

never seen anyone be more than empathetic and compassionate when we " vent " ....we

all need to do it and this is the only place I have found where people

understand and offer words of encouragement. I am lucky to have those few

friends who will listen and offer kind words, but deep down, they have no idea

what it's like....to have your whole world turned upside-down, practically

overnight!

I was dxd with CFIDS back in '99 and am married with 3 kids too (although mine

are teenagers now, for that I am thankful - I can only imagine what it must be

like for the kids to be small.) Mine were young, but not very small when this

all started.

I believe attitude can make a HUGE difference in how things go around my

house. I have always been the positive force here, go, go, go and take care of

everything (like most moms and wives!) Of course, that has come to a screeching

halt, esp over the past 3 years as the disease has progressed for me. I too, try

not to complain and stay as upbeat as possible, but as you know, there are days

when that is near impossible and it's all I can do to keep from crying in a

ball. I try to only break down when I am alone, kids are in school, hubby at

work. Otherwise, I think I would explode! I think it's very difficult for

husbands to understand what we are going thru. We are such a vital role in the

family and sudenly, WHAM!...... Most men are of the " get up and brush it off "

way of thinking and that is really damaging to us, but after all these years, my

husband is finally getting it - I pray you're husband will too, soon!

I finally lost my job this year and am now fighting for disability and of

course,that hasnt' helped the tension level around here, but I have faith it

will get better. My suggestion is to read, read, read, everything you can. If

you are lucky enuf to find a good doctor, stick with them. If not, you are at

least empowered with knowledge. I have learned everything I know about this

disease from reading: books and the internet is an amazing source of info. My

Favorites is filled with CFIDS/ME webpages so I can go back, cuz God knows, we

can't retain it all.

Good luck to you Marilyn and I know, you'll get a lot of great advice from

this group!

STL Jane

[Guest guest]

---hi maraly i know where i would start and that is by ensuring

every waste was on the outside of my body not inside

colonics enemas swaet baths massage special diets water intake etc

etc

having done that and you may feel worse for a while as you are ding

this

next would be nutition ie study it well and apply

and glandular imbalences correcting those

and spinal misaglinments often overlooked as people do not know the

importance of these

spiritual/reiki healing

massage

to name but a few

p

[Guest guest]

Hi Marilyn

Im glad youve written down how your feeling, it does help esspecially as you

said we can understand what its like, and we often dont want to go on too much

to our famlies even if we are close. I have M.E / Fibromyalgia.

Your said about nerve problems, yes this is also a sign of

cfs/me/fibromyalgia. Only last week i went to my dr with pain and numbness in

hands and arms, he said it was part of fibromyalgia, but i think you should

still get it check out just in ccase.

I too try to help myself by going pill free to my drs annoyance but after

spending 10 years on antidepressants and taking a few years to wean myself off i

refuse to go on any long term medication again.

As I have only had these conditions myself for 8 months im still 'new' too it

also and finding out what works for me is still trial and error.

As for the lyme disease thing, well someone emailed me and insisted i went

down that route, but here in the uk there are only 2 drs that i know of that can

help, but with the costs of tests and meds im not sure if i want to go down this

route. Sorry its no use to you i know ! I remember having a bite about a year

ago but other than that im really unsure. I have been told that M.E / Fibro and

alot of other diseases are misdiagnosis of lyme disease, but like i said i

really dont know what to do either so it will be interesting to see if you get

anymore replys about this.

Best of luck

Sandy

[Guest guest]

Dear Jane, Dutchie, Cat, Sandy, and everyone )

Thank you all for taking the time to reply. I've gleaned alot of

useful information and encouragement from you all. I wanted to reply

at length to each of you personally, but I'm just too tired ) My

husband is out of town to a conference for a week, and so I am

mostly on duty. Luckily, my kids are not too small- ages 4, 5 and 8

(no diapers, at least!)

Here are a few thoughts after reading your replies:

I don't have health insurance, which is one major reason why I

haven't pursued my diagnosis any further that that of " post viral

syndrome " . After several dr. visits and MANY rounds of blood tests I

was going broke and getting nowhere fast. The Lyme disease test WAS

very expensive.

The last contact I had with the dr. was when the rhuematoid factor

test came back positive. She refered me to a rhuematologist, but I

cancelled the appointment. I just didn't have the money right then

for what seemed inevitable dr. visits, more blood tests, and long

term prescriptions, and I really wanted to avoid taking drugs,

especially dependant ones. Thus, I wanted to try the natural route

first, but it is just not cutting it. But I think that I will just

have to break down and see another doctor.

A friend of mine is a nurse who sees a rhuematologist and says he

is wonderful. Do most of you see one? Someone in the group

recommended an indocrinologist. I will have to look into that- I

live in a very rural area, so hopefully there is one in my region.

On a personal note, one area I have trouble reconciling

emotionally is the variation and severity of my symptoms. I think

people (on the outside, not really my immediate family) get annoyed

with me because I am now more unreliable and unpredictable than I

used to be. (I used to say yes to everything, and have my hands in

everything, like a super Mom or something- that's probably why I am

sick now!) And I even get frustrated with myself because I can

barely do 1/4 of what I used to do. I also may appear like I am

faking when I am inconsistent; one day I can do something and the

next day I can't.

Oh, well... one thing I CAN do right now is go spend time with

my children and love them... I hear them singing in the kitchen

where they are having a snack. Real cute )

: ) Marilyn

[Guest guest]

Marilyn,

I'm sure your children are adorable! And your attitude toward them, and spending

time with them is great! (You're looking on the positive side by mentioning that

they're all out of diapers :>)

I was diagnosed by a rheumatoligist. Also, I saw one for several years. This was

some years ago. I might go back to one. I've also wondered about seeing an

endocrinologist but haven't.

If you were working outside the home prior to your illness, you may consider

finding out about Social Security Disability. I hope you won't need it--that

you'll recover soon. But it will be good for you to have the info. Even if you

wouldn't get much money per month, you'd get Medicare. And the process usually

takes a long time. (Forgive me if someone else has suggested this or if you've

mentioned it. I can't read all the posts.)

Your description of your " inconsistency " because you can't predict how you'll

feel at any particular time is " classic " for CFS. This really is hard. For you

and for others in your life. There are brochures/info which can be found on

various websites, such as the CFIDS Association, which you can print out and

give to people who don't understand. That might help. For those who don't/won't

understand, well, it isn't easy for you, but you cannot allow their lack of

understanding to upset you. I don't make promises now...if I do have to make an

appt. and I can't keep it, I make sure to call as soon as I know I won't be able

to make it.

And please try not to blame yourself for the illness. You did not get sick

because you were (are!) " super Mom " . Lots of super moms don't get sick. Whatever

causes this illness " got " you...it's an organic illness, not a personality

defect. I believe that if I'd been diagnosed sooner and could have taken it

easier, I might have recovered. But that's different. My busy life didn't cause

the illness. And I may not have gotten well even if I'd been diagnosed right

away.

You're doing the best thing by focusing on your children and what you can do,

instead of what you can't. I say this knowing that it's horribly frustrating and

discouraging...

All the best,

Theresa in TN