I don't think others seem to understand profound fatigue

[warmwaters]

Have totally been there. Have been lucky enough to have couple of people in my life who had also had chronic illness, and who understand I can't just "buck up", or "hang in there" when the energy drains out of me.  They've become closer friends because of this.

It goes on and on - I want to go to the matinee movie, not the 10PM one. I'd love to join you for music, but that starts at 9 PM. I have no particular way I could make it to 9 PM - by that point my pain levels are pretty high, and I be glad if I could make a whole sentence.

If you think it's worth your time, you can try some gentle education. Depends on whether you'd think they'd listen. I've sometimes explained it as - my health problems can leave me unexpectedly exhausted. I'm not always sure when. So if I have to leave early, I'm really sorry, but once I get exhausted, I'm like a 2 year old who just need a nap (fill in your description!) But I'm glad to have some time with you, and hope my body will hang in there with me.

[Polly]

This is my first day here, I came looking for information about treatments for Sjogren's fatigue and found Rudy's post! Thank you Rudy and all who've posted!

I have RA, PsA, psoriasis; my test results showed something once and I asked my rheumatologist if I shouldn't be tested for Sjogren's? He said no, no sense in it because there was nothing he could do for me anyway and I had it, didn't need to prove it. So for the past few years I've thought I probably had Sjogren's but I only knew the dry eye (I've had that forever) was probably because of that. At the same time, I've been going through periods of extreme fatigue and the doctors didn't know why. I've had mornings when my husband couldn't wake me up! I was diagnosed with hemochromatosis and treated for that and then the doctor who diagnosed it backed away from it, so now I don't have it (treatment seemed to help at first, then I got worse).

In March, my mouth went completely dry. It was about the worst I've felt, adding that to the usual pain and fatigue. And I was at eye doctor appointments and just so miserable. Later I found a huge abscess in my mouth and realized I had thrush, too. I finally started reading about Sjogren's and found out about the fatigue. I asked my rheumatologist if there wasn't anything that would help and he brought up Adderall. I was afraid of that. He gave me a prescription for something for the dry mouth, it made me incredibly sick. So I asked him for the Adderall and he told me to ask my primary care provider to prescribe it. I'm not hopeful.

He gave me a pred taper. The first two days it felt like it was helping but pred gives me insomnia so I didn't sleep at all. I was so sleep-deficient, I think I went into another flare before I got out of the first one! And I still have the thrush, I think it's gone down my throat, sometimes I lose my voice.

I've heard of Provigil/Nuvigil and Adderall. Is there anything else? I'm not living, I'm just too tired to live, there must be something that works.