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Chronic Fatigue Syndrome
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BraveJedi
Regular Member
Joined : Jan 2006
Posts : 26
Posted 2/20/2006 1:44 AM (GMT -7)
For about 15 years on and off I've been very tired. Some days can barely get off the bed. Other days are better but I've never been able to stick with anything long be it sports or a course etc...

 

Some people thought I was a quitter. Far from it. I just can't do things at times that others can.

 

My thyroid was checked. Normal. My iron is low but I am not anaemic. I've been on Prednisone for Asthma my whole life pretty much.

 

The thing is, I now find myself 25 years old and I don't have anyone. The support group in my State closed down and I am seein a Chronic Fatigue Dr this friday to see if there are any support groups but...

 

I have to ask you guys. What do we do? What do we do for the lack of social contact and the lack of being out there?

 

How can we make a decent living?

 

Do you watch a lot of tv or read like me? Because you have nothing else? What do you do to give you energy if you have found a cure?

I don't know what to do. No Dr has ever said "You have chronic fatigue" they just um and ah and say "possibly" yet no-one wants to say it.

 

I can't believe how tired I am, How sore I am in the joints etc...I also suffer anxiety and some agoraphobia.

 

I just don't know what to do to deal with the loneliness and lack of being out there. How do you cope?

 

God Bless You...XXX+++

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Foreign
Veteran Member
Joined : Jul 2004
Posts : 674
Posted 2/20/2006 7:21 AM (GMT -7)
Hello BraveJedi!!
I too feel the same way sometimes. I have no energy and getting up every morning for school is becoming such a task.
I too am 22 and have a lack of "friends". All because I am too sore or tired to do the things they like to do at this age.
If it wasn't for this site I think i'd go nuts. What do I do all day?? I basically sit in front of my computer all day but that can only entertain you for so long.
I wish I had some advice for ya...But you are not alone..I bet there are more then just you and I out there that have the same problem.
Hope you take care and talk soon.
Mel
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cutie-pie
New Member
Joined : Feb 2006
Posts : 4
Posted 2/20/2006 3:38 PM (GMT -7)
Hi BraveJedi,

I really understand what you're going through. I became "sick" when I was one month shy of turning 21. I did loose alot of friends with time because I just wasn't getting any better and couldn't go out with them. After a while people started thinking it was my way of blowing them off so slowly we drifted apart. I do still have some friends (the ones that did stick around are TRUE friends) and they are more understanding, they know I can't really go out so they come to see me and we just sit around in my living room and chat or play cards while watching TV. I too feel lonely, like no one understands me and now I find myself reluctant to make new friends because the same question always comes up: What do you do for a living?" I had to stop working because of the CFS and joint pains and headaches (the list goes on and on...) but I don't like to tell people that about me because not everyone knows what CFS is and it's effect on everyday life. And some people judge because to them I look fine but I'm tired and in pain. People also don't see me unless I'm having "a good day". After a few years of only having a book or the TV I took up some hobbies. My dad always tells me to keep my mind and hands active whenever I can so I started doing cross stitching. I find it relaxing and it does pass the time. I do crossword and sudoku puzzles too. I spend a bit of time in front of the computer too. On good days, weather permitting, I try to go for little walks and sometimes engage in small talk with neighbours but that's about it.

I guess we all have that same problem, but at least we know we're not alone.

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Shaper
Regular Member
Joined : Jan 2006
Posts : 23
Posted 2/21/2006 12:10 PM (GMT -7)
Aloha brave jedi - i know how you feel!!!!it took 5 months to diagnois me with CFS and i had to leave work. most of my friends at my work place lost interest pretty quickly once they found out that i was unable to join em in the fun and games! But dont fret - you'llk always have friends true friends never leave(even through your life is a rollercoaster) i posted this in another topic but it looks like everybody could use it so i'll put it up as a subject. but i've recently tried reiki and it worked for me. after the session i felt energised and 100% better - and it didnt take me 2 hours to get out of bed the following morning!

(Sorry I edited this post but you have it on here several times and rule # 17 dictates no duplicate posts..So I left the one thread mentioning this the once.)

Post Edited By Moderator (Foreign) : 2/21/2006 7:53:52 PM (GMT-7)

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FallenAngel311
Regular Member
Joined : Nov 2005
Posts : 90
Posted 2/24/2006 9:34 PM (GMT -7)
Hello and welcome!!!

I'll be 25 on March 11th, and after suffering from chronic fatigue for 10-11 years... I finally got a definitive diagnosis today!!!

What's worked wonders for me, if you have the 'scrip coverage, is Provigil. I personally don't have any side effects, I get up in the morning, take one... and have the energy I need to get through the day without feeling jittery, or shaky, or jumpy or anything like that! It took me 10-11 years to find a doctor that was willing to listen and run all the necessary tests to actually make that diagnosis.

To pass time, I'm usually either on the computer, playing video games, or doing things like sudoku (I do those too!!) or cryptoquotes or cryptoquips... whatever they call them lol... to keep my mind sharp. I'll read too sometimes (although I rarely feel like it lol). And, I do go hang out with some good TRUE friends here and there... plus I'm the President of a Car club in our local area, so that definately keeps me busy and sociable! Not to mention, in August I'm starting my long trek to work on getting my Doctorate in Veterinary Medicine... so 6 or 7 years from now... I'll have it!! Ya see... I got to a point in my life where I finally decided that I was NOT... and that I REFUSED to let this fatigue, or the traumatic event I went through 4 1/2 years ago to run my life. When I set my mind on something, I'm quite ambitious, even though sometimes it's hard to get started. But I just set in my mind, that I'm going to do this, and I'm not letting anything hold me back from what I want in life, and what I want out of life... and the Provigil has helped me tremendously!

Having CFS can be lonely... but if the friends you have refuse or can't understand and stand by you, who needs them as friends anyway?? But if ya ever need someone to talk to, feel free to shoot me an email or IM or something!! Bless you, and I hope things get much better for you in the near future!!!
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obs ann
Veteran Member
Joined : Jan 2006
Posts : 679
Posted 2/25/2006 7:35 PM (GMT -7)
Hi BraveJedi,
Support groups are great if we can find one in your area.
Here are two sites where you could search, if you haven't seen these already.
http://www.cdc.gov/ncidod/diseases/cfs/support/supus.htm
http://www.immunesupport.com/supportgroups/?SourceCode=EM022206
The second best is Here (o: }
Actually, that should be the other way around. "Here" is Here, 24/7 and support groups members unfortunately do sleep now and then ... ha. And usually take naps, ta-boot.
It took me two years of being alone before I found folks in my area.
I don't go to the meetings normally, because I can't ... but stay in touch with the ladies from two Groups.
That helps, but being here has been really great.
I don't have to stay on the CFS subject. I can cruise around to others and realize, it could always be worse. Always.
Anyhow, I just feel bad though that most of you all are so young and having this. I just pray you can see a total remission. I have a two friends who are 20 to 40 years older than you and both are in remission. NEAT !
Don't give up hope and do what you can, when you can. I'm on the puter mostly, and that can make a day fly by and be very rewarding after a while.
I'm on this Forum and one other. The other is not for us sick folks ... but that's good because I can get my mind off of me and "it" and get into talks about my Interests.
Anything you may be interested in, probably has a Forum. That can be fun.
I wish I could take all of your CFS from you because I'm older and I'm stuck home anyways. ha.
My heart really does go out to you all, and I'll be rootin' for ya's that life will look brighter, with new high-points and interesting distractions, with Spring around the corner.
God Bless y'all.
Ann
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johnnyboy
Regular Member
Joined : Mar 2006
Posts : 51
Posted 3/10/2006 12:03 AM (GMT -7)
Hello. I really don't know what to tell you other than you will find people who are real, and will understand you. I think everyone here can relate to how you feel. I've lost more than I think I could ever get back and you just have to carry on. Stay positive and do everything you can to feel as good as you can. Talk to people here as much as you can, everyone is nice here. God bless
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jasminerose
New Member
Joined : Mar 2006
Posts : 1
Posted 3/11/2006 6:31 AM (GMT -7)
Hi im new to the forum but I know how you feel , your life changes so much with this sickness, ive just found out that you lose mates but they are not really your mates if they dont stick around anyway.for myself I belong to a church and get some suport from them and i do what i can , ive learned to have patients and do art things that help me with the pain is visalisation , imagine what im going to do when im well . you just have to count your blessings as hard as that is .try and think what you can do and not what you cant do .love and blessings from jasmine
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