I'm new here,looking for some advice on CFS.

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Areweforgotten
New Member


Date Joined Feb 2006
Total Posts : 1
   Posted 2/3/2006 11:19 AM (GMT -7)   
Hello everyone,My name's tony and im 19 years old.I was diagnosed 3 years ago with CFS.I did a search on google about support groups for CFS,seeking some help and understanding about this disease.Most people seem to think that this disease is all in my head and that i should just get over it,all I wanted was to find a place where people understood how I feel.I have tried a few things to help myself feel better but so far nothing really works,I have tried taking a multivitamin and some magnesium as well as changing my diet but so far I dont feel too much better.I was wondering if anyone here could help me with some suggestions about what to do.The main problem I get from my CFS is the inability to concentrate and lack of energy.Being this way makes ever conversation I have a chore and really puts a strain on my relationships with friends and family.This is the most frustrating part for me about the disease,as it causes a lot of stress and most people dont really know how to react to someone whos tired all the time.I usually have more than enough energy to do things around the house and at work,but my mental energy is almost non-existent.I have the hardest time doing simple things,asking for directions,talking with people,and to be honest it makes me feel really dumb.I know im not really that way but thats how I feel.I'm willing to try anything to start feeling better,I believe that with each new day comes another chance to feel better and im confident one day ill be able to get over this disease and live a somewhat normal life.So please if you have any suggestions,could you please help me out and post them?Thanks-tony.

Foreign
Veteran Member


Date Joined Jul 2004
Total Posts : 674
   Posted 2/3/2006 2:38 PM (GMT -7)   
Hello Tony and welcome to Healing Well!!
I suffer from Fibromyalgia which has some cfs involved.
I think most people's problem with this disease is that they don't think it can affect us "kids" (i'm 21).
I get discriminated against because of it and that hinders people's abilities to understand.
I'm still learning so i really don't have much advice but im' sure someone will come along and fill in some blanks. just wanted to welcome you.
Mel
Co-Moderator for Fibro
Moderator for CFS
Please make HW donations @: http://www.healingwell.com/donate


Photosoph
New Member


Date Joined Feb 2006
Total Posts : 5
   Posted 2/3/2006 2:47 PM (GMT -7)   
Hey, I'm not sure if I have any great suggestions... there are heaps of different medications, vitamins etc out there that seem to work for some people but not for others. One thing I've found that helps me a bit are fish oil tablets, especially the samon oil ones; they're the best.
Other than that, I'm just writing to let you know that you're not alone. I'll be 18 next month, and I've had CFS for about four years now. I haven't been able to get to school in that time (except for one time I went back that didn't work out at all, my health went backwards quite a bit after that...) and have been doing schoolwork via correspondence school for these years I haven't been able to attend high school.
I know what you mean about not being able to think clearly. Mental excercise takes energy just like physical excercise, and having a 'foggy brain' most of the time doesn't help either.
My social life has suffered from this, though it's suffered mostly from an inability to attend a lot of social events, really, since at this point in time my health isn't so great. It's been fluxuating up and down for a while.
But I know I'm picking up, and I know that this illness doesn't last forever; I will get better. The internet's been great; if you can find a good forum (and they're hard to find, heh ^_^" ) then it really helps to have people to talk to, especially since you've got more time to think up your replies. Generally if you're looking for a forum to join, search for something along the lines of your own interests... for example I joined a forum called 'Christian Anime Alliance', since I'm a christian and I like anime.
I'm not sure if this post has helped too much, but I just want to let you know that you're not alone.
All the best, Tony; I hope things get better for you.

obs ann
Veteran Member


Date Joined Jan 2006
Total Posts : 679
   Posted 2/4/2006 5:52 PM (GMT -7)   
Hi Tony, Do you have a Dr. that knows about CFS ?

Did you find any Support Groups in your area, where you live ? Talking to others locally can help so much.

I'll see if someone knows who you can contact.

I know what you mean about feeling dumb. It has nothing to do with your IQ Tony, that's for shur, it's just the strain of communicating when your brain is so TIRED. Amen to that ... I fully understand.

I shouldn't, but I drink coffee. But the Omega 3 and stuff in the fish oil caps that Photosoph mentioned are what my Dr. told me to get also and I have two articles about how well they work too.

Down here, where we live in southern USA, there are Support Groups for just about anything.
If you can't find one for CFS, than look for ones for Lyme or FMS or any invisible illness and you'll be surprised how much we all have in common, especially with the brain fog. Phew ~ FOG. Not that pretty kind like where Photosoph lives though. (o: } Wish it were.

Hang in there Tony. You're not alone. My #1 complaint is the fog, but mine comes with much inflamation of the brain .... so I wear an ice-pack for a hat .... ha.

Talk to you again.

Ann
Late Neuro-Lyme & CFIDS. 


obs ann
Veteran Member


Date Joined Jan 2006
Total Posts : 679
   Posted 2/4/2006 5:57 PM (GMT -7)   
Foreign, is it just my imagination, or is the CFS board the least trafficed ?

I thought that may be because we're all just TOO TIRED to come post. Ho-Ho !

/o: }


:)

You can tell I'm in the Quick Reply Zone ~ huh ?
Late Neuro-Lyme & CFIDS. 


grannycfs
New Member


Date Joined Jan 2006
Total Posts : 7
   Posted 2/8/2006 8:52 PM (GMT -7)   
Hi there,
 
I've had CFS for over 20 years and I help lead a support group. I would strongly encourage you to find a support group - assuming there is one in your area. The CFIDS Association can help you with that. They have a listing for all the states.
 
I have an old listing from when they used to provide them for all the states now all they issue support group leaders is for our state. What state do you live in and what large city do you live near.
 
I would also encourage you to go to www.cfids.org and go through the various types of information available to familiarize yourself with the disorder such as how it's diagnosed, treatment, etc.
 
There are very few doctors in this or any other country that specialize just in CFS so it's very difficult sometimes to get a diagnosis. That's why you are given some vague answers. When doctors don't know what's wrong with you, they immediately assume depression if you complain of fatigue. But there is a very defined list of symptoms that a good doctor can use to determine what you have.
 
Any good doctor - family practitioner - will first rule out all the obvious disorders. There are specialized tests that can help to determine your disorder if CFS is suspected. It's very complex and confusing. Many times doctors confuse CFS with MS and vice versa.
 
If I can be of further help, you can email me at grannycfs@aol.com or post a response here.
 
Granny

Rock
Regular Member


Date Joined Oct 2005
Total Posts : 28
   Posted 2/15/2006 10:39 AM (GMT -7)   
Tough to get this DD when you're only a teenager.
 
I've been looking for a magic bullet for 25 years.  Haven't found one yet.
 
Some people, however, have reported good results w/ supplements.  I suggest you try some.  Not all at once, but one at a time for a month or two.  Maybe you'll find something that helps you. 
 
Good luck.

FallenAngel311
Regular Member


Date Joined Nov 2005
Total Posts : 90
   Posted 2/24/2006 2:13 PM (GMT -7)   
Try talking to your doctor about Provigil. It's expensive, but it works VERY well for me. I have an easier time thinking, concentrating, less fog... and I have energy to get through the day, but it's not like caffiene where if you have too much you feel like you'll go nuts if you don't do something.

If I just want to stay home and relax, watch tv or something... I'm fine. If I want to go out and do stuff... I have the energy I need... and have a much easier time concentrating and thinking, and other things that can be hindered with CFS. It may not be for everyone, but it's been a godsend for me.

Btw... I'll be 25 on March 11th... and I've been suffering from CFS for the past 10-11 years... although today FINALLY I got my difinitive diagnosis. Can't wait to tell my mom that I was right and there was somethign wrong with me... she's been attributing my fatigue to laziness all these years. HOORAY FOR A DIAGNOSIS!!!
Hugs,

Nikki

I do not know what's wrong with me yet, but hopefully I'll find out soon :D


sslaird
New Member


Date Joined Jan 2006
Total Posts : 6
   Posted 3/3/2006 2:17 PM (GMT -7)   
hi there,
i am newly diagnosed myself. finally found a doctor in another state that has some idea what cfs includes. i also take lots of supplements and am on a special diet. i recommend looking at endfatigue.com for a list of supplements that may be worth trying for the brain fog; look under "treatment protocol". they have helped me with everything but the infections and my response to any kind of stress. there is also a list of doctors that have some knowledge of cfs. i found my new doc there and am hoping to get some good results from diet and medications.
i have to say looking at the teenage response to this DD cheers me. i admire and hope to emulate your optimism and belief in yourself. good luck!
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