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How long has CFS lasted for any of you? I feel it coming back after years, can that happen?

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Chronic Fatigue Syndrome
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Posted 2/4/2006 2:35 AM (GMT 0)

>HI to all!

 

>Is it possible for CFS to come back, I had it five years ago, it lasted 3 years and now I feel the

>same symptoms.....Could someone get back to me as soon as you can cause you know when

>you feel the way you do with CFS, you need as much input from people in the same situation

>that understand. I also am being tested for parkinsons disease and I am 48 years old. I need

>as many of you to give me your feedback, I feel horrible and my family doesn't understand. confused

>Thanks so much, take care of yourselves,

 

>ally049

>e-mail:[email protected]

Posted 2/5/2006 12:25 AM (GMT 0)
Hi there ally,
Unfortunately, CFS can come and go and come again.

Are there any CFS Support groups in your area. I ask that, because the two groups near me practically saved my sanity, when I didn't know what was going wrong with my health and all.
I didn't attend but one meeting each, but made friends from both groups, that would call me and keep track and be there if I had any questions. They were real God sends.

When will you be tested for Parkinsons ?

Many people say that their family doesn't understand. That is so so sad. But sometimes, what you need to do is download a good article and just leave it where they can read it.

I think the best is one you can find by typing in "Canadian Definition of M.E./CFS" to your Search -Google or whatever.
It's 30 pages, but my medically illiterate husband could get a grasp of what it was saying and it helped his understanding quite a bit, when he read it.

Keep us posted here also.

I can't do many emails, so I'll look for you here, if that's alright.
I'll be praying that your Parkinsons test comes back Negative.

Hang in ally.
Ann
Posted 2/26/2006 3:45 AM (GMT 0)
Never hear of CFS coming and going. I've had it for 25years.

(Can't read your post; the color of the print is too light.)

Good luck.
Posted 3/31/2006 10:28 PM (GMT 0)
I first had it in 1990 and it has never left but I did feel it clam down it seemed compared to now it is worse than ever along with having fm too. I feel for you on feeling like family dosent understand. I do think almost the worst part of us being so ill, is not looking as ill as we are or looking ill at all, and feeling not believed that is true torture to me. Just know we all believe you and i agree get info. to have them read i had to do that to, hopes they will come around soon and support you.
hugs,
Donkey ;o)
Posted 4/1/2006 4:24 AM (GMT 0)
CFS can come and go in cycles.

I've had it for 10-11 years... and while it's never totally gone away... there's times I feel much worse than others.

Some people never feel relief...

Some people only have mild cases their whole life...

Some people have severe cases their whole life...

Some people "cure" and it goes away and they never have it come back...

Mine personally has never gone into remission... for the past 10-11 years... but like I said there's days I feel so bad I can't get out of bed... depends.

Stress from all the things I've been reading is a trigger for it to either "come back" if you're in remission, or make it worse... and boy oh boy do I ever know how that is.


The hardest part I think is that people don't and can't really understand what you're going through unless they go through it themselves. The thing to keep in mind, is to not EXPECT anyone to understand what it's like. It's hard for people to accept also because they're so misinformed about it. My mom didn't understand or accept it period... and just thought I was being lazy or making excuses. "Just get more sleep"... "Just get up early everyday and get used to it it'll help"... blah blah blah. She sorta has a better understanding since I printed out my blog for her to read shortly after my official diagnosis (which wasn't until this recent Feb 24th).

If it might help those around you understand better, feel free to show my blog to them. It might help for them to read about someone else that has to live with it to understand more.

www.myspace.com/fallenangel311

The blog is titled something like "PLEASE READ!!! (Understanding...)"

Might be a long shot... but it may just help.
Posted 4/1/2006 5:08 PM (GMT 0)
I was diagnosed in 1991 and had it for a while and then went into remission. Even during remission, I would get tired easily and once in a while my body would crash. about 2 1/2 years ago I got really sick and now I'm being treated for lupus. It's hard to sort out what is what, but I imagine my chronic fatigue is back too because whenever I exercise I feel much worse and I don't think that is always the case with lupus.
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