Fuzzy feelings

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Regular Member

Date Joined Jan 2006
Total Posts : 26
   Posted 1/14/2006 3:47 AM (GMT -6)   
Past few days I have been way more tired than usual. Really groggy and joints aching worse than usual. I get up..then go back to bed for some of the day.
Is that what it's like for you guys aswell?

obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 1/14/2006 4:35 AM (GMT -6)   

Hi BraveJedi,

How long have you had CFIDS ?  Or when were you diagnosed with it ?

I was very lucky to find a good Support group in my area and met one of the heads there, who's had CFIDS for over 20 years.  She's a research expert on CFS, besides just her own full-blown experiences with it.

When I first hooked up with her, I asked her so many questions, because the dang disease changes so often.

What you're going through is the normal ups and downs of it.  They call it "crashing" in CFS language.  When you're more exhausted and the other symptoms flare with that.

There are over 100 symptoms that can come with CFS.   Some come and stay, some come than go.  It's a roller coaster ride, for sure.

It's taken me 3 1/2 years of learning about it, since it and Lyme made me homebound and unable to work any longer.

The best favor you can do for yourself, is do a search on CFIDS and research it on the Internet. 

You can contact one of the CFS/CFIDS Associations and find out if there are any support groups in your area.  Talking with other local people who have had it a long time really helps.  But with any disease, Researching it on the web on medical sites is your best bet.  The more you learn, the less shook up you get when a new symptom hits you or something changes.  It's a very weird syndrome for having so many possible symptoms ... so it's good to know as much about it as you can.  Then you just sort of "ride with it".  Good days - bad days.  And sometimes a bad crash can last for months. 

You need to gradually learn your own pace.  Or as they call it, your "energy envelope".   It's like you figure out how much energy you can expend in a day and you learn to stay within expending only that much.  

It took me two years to learn what this "syndrome" can do to me, but I also know that tomorrow, another new thing 'could' happen.  I just pray for no more please.

Just rest.  That's what the best researchers will tell you.  Then learn what your energy envelope is.

Rest and Peace.


Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/14/2006 8:50 AM (GMT -6)   
BraveJedi, when I go through what you are going through when I am feeling my worst. I used to really fight it and feel like a failure if I spent a day in bed. Now I've learned if I listen to my body and rest when it needs it, I have a lot fewer whole days spent in bed. I do try to work out periods of rest throughout the day even if I'm having a pretty good day.

Ann had really great advice about finding info and support and about learning to pace yourself. The biggest mistake I make is doing too much on days that I feel okay and then I really pay for it and my body completely crashes. I hope you are able to get some rest. Take care
Dx:  Suspected Lupus 2004, CFS 1991
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 300mg

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 1/14/2006 11:22 PM (GMT -6)   
eyes  Yep. sad

Regular Member

Date Joined Jan 2006
Total Posts : 26
   Posted 1/15/2006 9:52 PM (GMT -6)   
I can't believe how sore I am in the joints. And it hurts in the neck aswell.
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