Wondering what you guy's do about the exhaustion that comes on with out warning.
Rest rest rest and never feel guilty about it… Thats probably the worst symptom of mine for sure besides the joint pain! Hard to get used to when you are not a lazy person but if u dont rest when u feel like your body needs to, then you’ll really be in trouble… Just my experience… Hope that helped some… And im sorry too, to hear about your new diagnosis, but everyone here is “gets it”, and will always be of support to you!
Hi ty,
So sorry that you suffer this, seems it is such a big part of autoimmune! There is not a single group that I have been involved in that does not suffer exhaustion. I feel much of mine, if not all, is pain related. Pain just wears us out, it most certainly keeps us from sleeping well.
I wish I had a good answer for you, as far as a recommendation, but other than just laying down in a quiet comfortable place, and resting there just aren't any.
I do know that some people take meds for this, and my GP had given me a coupon to try Nuvigil, I never did try it.
I have had great results with Provigil....It keeps you from having that dead tired syndrome and does not make me jumpy.
I also have a good book going, while you are down you may as well enjoy.!
I have had problems with Prednisone because I
wake up at 3;00 and seldom get back to sleep .But, the Prednisone had taken my pain away 100% :I hate to see it go.
!
1:15 am here, awake but exhausted. Thanks Prednisolone! Cant wait to get onto appropriate meds *sigh*
Exhaustion - rest, rest and more rest. I take Berocca Performance (multi vits with high B group, C, Magnesium and Zinc), it helps a little. The sudden profound fatigue is something I don't think I will ever get used to. It hits out of nowhere and you never know how long it will last for. All you can do is go with the flow, and look after yourself. Listen to your body.
what they said........................rest, rest and rest some more. Sometimes I feel like I can collapse. You just have to lay down. And don't feel guilty...we know we're not lazy. And who care's if someone that doesn't get it, does!!!!! Feel better
I have a lot to learn about Sjogren's and your replies are helpful, thanks.
I think Niki said it very well. And we do all get it.
Lessening fatigue seems to be a combination of things. I rest when needed. I did start some of the supplements mentioned here too. And I'm far enough along that doc already started me on Plaquenil. Hard to know what works or if its all in conjunction but if I had to bet, I'd go with the combination.
A lot of being a Sjoggie is listening to your body and learning its new needs. I find the most important things seem to be: say no when you need to (to avoid wearing yourself out to begin with) and rest when you need to (without apology). Be good to you.
Good luck and remember that we are all here for you.
There's a couple things I do/did which help me a lot. Believe or not, but switching to drinking only mineral water helped. Our bodies are a pH of 7.4 and mineral is usually 7.6 or 7.8 so that's good for us. But water that undergoes reverse osmosis usually has an acidic pH which makes the body sick. That helped me the most. I get the fatigue in my calves mostly and they feel like they weigh 50 lbs each. The other thing is that my acupuncturist really revs up the needles in my calves and uses that thing that adds an inpulse to the needles, etc. That lasts great for about 3 days anyway. But I stay on the mineral water for the rest of the time and I have not had that super-heavy legs feeling since then. Sometimes when I really flare up, I do get shaky for a short while in my legs but it goes away.
Good to hear it Mimi, I am very sensitive to anything with time release in it, there is a super potent caffeine or something like it that sets me on fits, I get real jumpy, jittery and itch so badly I about tear my skin off, so I have been apprehensive to even try the Nuvigil.
I am so relieved that I haven't had the insane fatigue in awhile but it really is freaky how intensely it comes on, sometimes out of nowhere. I hate feeling that out of control.
Wow, SK. That sounds brutal. I get nervous about starting any new med just for that reason.
I myself have dealt with horrible exhaustion. I just sit in my favorite chair and do nothing, except fall asleep watching TV. I have absolutely no energy to even move. It can be so horrible at times. I myself feel as though I am lazy and I know that I am not. I have at times tried to push on through it but that doesn’t work either. I was recently diagnose with Sjogren but I have been suffering from it for many years before the diagnose. The painful and numbing feet, also the stiff and painful joints adds to the exhaustion. I am now trying to lost about 40 lbs and walking more to see if that will help. Tymmesone don’t lose hope.
I am battling the exhaustion right now. We entertained over the weekend, which is something I rarely do. Cooking and cleaning has taken a toll on me. Severe muscle and joint pain. I found myself on the sofa all day yesterday. But didn't sleep well last night..........so even more tired this morning. Of course I'm in work today. Women get to do it all.
I have suffered from extreme exhaustion for years, never knowing I had SS. Always feeling like a slug, when others seem to have limitless energy. I no longer care what anyone thinks. You will have to find a way to balance it and prioritize. I make it very clear now to everyone, "I have limited strength and stamina", so don't expect too much from me.
But most important, you can't do it all.....and who really cares.
God Bless.....................connie
Connie said:
I am battling the exhaustion right now. We entertained over the weekend, which is something I rarely do. Cooking and cleaning has taken a toll on me. Severe muscle and joint pain. I found myself on the sofa all day yesterday. But didn't sleep well last night..........so even more tired this morning. Of course I'm in work today. Women get to do it all.
I have suffered from extreme exhaustion for years, never knowing I had SS. Always feeling like a slug, when others seem to have limitless energy. I no longer care what anyone thinks. You will have to find a way to balance it and prioritize. I make it very clear now to everyone, "I have limited strength and stamina", so don't expect too much from me.
But most important, you can't do it all.....and who really cares.
God Bless.....................connie