I don't understand.

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Yvee_boo
New Member


Date Joined Jul 2006
Total Posts : 4
   Posted 7/21/2006 2:00 PM (GMT -7)   
:-)  Hi!!
 
My sister has Chronic Fatigue Syndrome. She was 13 when she was first diagnosed with it and she will be fifteen this december. She is still suffering quite severely although she is doing really well, it is effecting almost everything she wants to do. I know that in school, her friends don't understand and they are really nasty to her saying it's all in the mind, but as we know it isn't. It's more than that and to see her upset about it is heart melting. I try to understand but i don't really know what i can do. If anyone can explain to me more and help me out please do!
 
I don't know how to help her. I don't even really understand what it is about. I know the syptoms, but can't understand really the rest of it. I really want to get to know the illness a bit more, and find out what will effect her in a good way and help her build back up her confidence. How can I get everyone to know that it isn't all in the mind?
 
Thanks
 
 
From Yvee x

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/22/2006 5:36 AM (GMT -7)   
Hi Yvee. Your sister is really lucky to have someone like you who cares so much about her. CFS is such a hard illness to cope with, especially for teenagers because they cannot do the normal everyday things that their friends are doing. This disease is probably really hard for her friends to understand too because the tiredness of CFS goes way beyond the nromal kind of "tired" that people feel from not getting enough sleep. It is like your entire body is completely drained of any strength and energy and no matter how much your mind wants your body to get up and do things your body will not cooperate. People with CFS do not feel better or less fatigued no matter how much they rest. CFS is also hard to cope with because most people don't understand it and a lot of people think the disease is "all in the person's head" because they can't see any outward physical symptoms.

As far as what you can do for your sister, the most important thing is to be there for her and truly listen to her. You can't make the illness go away, but you can be there for her and just listen when she gets frustrated or really down and you can enjoy any good days she has. I don't know how old you are or how well you know her friends, but after you learn more about CFS you could talk to her friends about it and help to get them educated (I don't know if they'll listen though).

If you us an online search engine such as Google, and type in Chronic Fatigue Syndrome you will find some good information out there that will help you understand CFS better. Just steer clear of the sites that offer a "cure". No matter how great these "cures" sound, these are people who are just trying to prey on people like your sister and get money for a bogus product.

Let me know if you have any other questions. Take care
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/



Yvee_boo
New Member


Date Joined Jul 2006
Total Posts : 4
   Posted 7/23/2006 9:33 AM (GMT -7)   
tongue  Hey!
 
Thanks for your help! It really is appreciated, you don't know how much!
 
Thanks again
 
Yvee x

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/23/2006 10:41 AM (GMT -7)   
You are welcome Yvee. I saw on another post you made that your dad doesn't believe there is such a thing as CFS. It's so frustrating when people think the disease is all in a persons head. CFS is a very real disease and I don't know anyone who would choose to have it - it's such a miserable illness.

Just know that we are here for you and your sister anytime you need some support or have any questions.

Take care
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


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