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I hesitated to reply to this thread, as I do think one should try all of the non medication based solutions first. However, I also know what it is like to have tried them all and gotten nowhere. Years before I was diagnosed with CREST I had to deal with the fatigue of Dysautonomia.

 

When you are young and look healthy you don't get a lot of sympathy. I found that it is better to keep your mouth shut and just find a way to get everything done. It took everything I had to get through a normal day back then.

 

These days I use Provigil to take the edge off of my fatigue, and I have to say it has been an enormous help.


keep on smiling

 

crawler

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Hi LeAnn & JJ, you'll find your way around this fatigue just like all the other obstacles, never fear; you are stronger than you think you are. I forget who said it somewhere on this site, but they explain their disease to other people by saying they wake up every day with a number of 'spoons.' Some days they have more spoons than others. Sometimes it takes one whole spoon just to shower and get dressed. When the spoons are gone, they're gone... we learn how to pace using our spoons! I've had to learn to ask for help which I fought for a long time, but once I got past that I found that soooo many people are so willing to help. They call me on really cold days to see if I need anything so I don't have to leave the house. They have throw blankets ready for me when I visit their houses. My kids are experts at cleaning and cooking, and my 17 year old turns on my paraffin bath to warm up for me if I happen to be out on cold days so it's there waiting for me. I had to learn to change MY expectations of MYSELF. I take my spoons and use them wisely... and you will too. The first year is the absolute hardest but when it's over you realize you made it through, and knowing what's coming next is not exactly reassuring but it helps a lot. Wishing you warm days and lots of spoons.... love Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Thanks Mary, and to everyone else who offered advice/support. I know that I need to change my expectations for myself. I also know that I need to learn how to be satisfied with and proud of my "little" accomplishments each day. I am trying, but my previously type A personality gets in the way sometimes. I think I could handle the pain and physical limitations if I could just muster up some of my old, fierce energy. Is today a pity-party day? I think so! Ha.

 

You're all invited. Thanks for being here for me. ~LeAnn

 

P.S. We'll make it, JJ - I know we will!

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Hey LeAnn!

 

Thanks to the invite to the Pity Party! I'll bring the chips and dips. :lol: We're strong-minded people and I think "will" features a lot more than "won't" or "can't".

That determination is going to stand us in good stead, I think.

 

Yes, Ma'am, we will make it!

 

JJ

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hi I too suffer from fatigue :( badly I spend all my hours in bed and if not there im sitting doiing nowt B) even doing trying a crossword or reading leaves me mentally exhausted :( i dont often post coz im that tired im on meds just for reflux and my raynoids (if thats how u spell it) hope u find some peace to your fatigue soon :rolleyes: u all take care keep warm jaxsxxx


live life for today and not for tomorrow

 

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