Sorry to bring this up again to you all but this fatigue that Im feeling is going overboard. I get up in the morning for about 2 hours then sleep for around 3 hours., then I fall back to sleep around 3 in the afternoon and sleep until 6 stay awake till around 7;30 then Im in bed for the night, the only thing that awakens me is this new thing where my arms and my legs have this involuntary jerking which I hate because it hurts my joints when it happens and Im really hoping it has nothing to do with the cervical neck problems that Im having right now. I talked with my husband about all this and he said to get online and chat with you all to see what everybody had to say and if there was any advise
I have to say that during my big flares, I did more sleeping than anything else. For any of the newbies here, go to www.butyoudontlooksick.com and read the spoon theory. It was written by someone with Lupus, but it really is a great analogy to understanding fatigue. I had about a 40% improvement after the flare had passed, basically I wasnt napping everyday, but I would stay up one day and sleep the next. Now that I have been on Enbrel for only 3 weeks I have noticed a great decrease in my fatigue. I am back to where I was 6 months ago, before my first really big flare. I would say I am at about 80% compared to 2 years ago when the chronic fatigue started setting in. Maybe that is as good as it will get, but I have been where you are and so I am totally satisfied with where I am at now. The RA makes you tired. Methotrexate makes you tired. Pain pills make you tired. The Folic acid helps alot, if you take a high enough dose...2400 mcg (2.4 mg) per day at least. But there is a part of it that you just have to learn to live with. That's just the reality of it.
The legs, are they cramping or spasming? I am not sure what you are trying to describe there. Is it painful or just annoying?
I'm so sorry your feeling badly. As I've said before fatigue is my biggest complaint with my RA.
I agree with crunchy, during the flares it's much worse. During times of unusual stress or depression (I know we can't help but be depressed at times with RA taking over us) makes the fatigue worse too.
A few things I try to do to help deal with the fatigue:
Plan my activities around my fatige - I do things around the house in the am for about 3 hours. Nap 20-90 min. usuallly.
Get up do some more, prep dinner, laundry, email, lunch, spend a little time outside if it's nice. nap again.
Up, fix dinner, wash dishes as I go so they don't build up, finish what ever I started earlier in the day. Then I pretty much sit back and rest, watch tv or get on the computer until bed time.
On days when I have to go somewhere I know for sure I'll be wiped out that day and the next or possibly several. I plan ahead to have something easy for dinner or leftovers. I do as much as I can around the house the days before I have to go out. When I get home it's right to bed.
The fatigue does have different levels. Some days are much better or much worse. I just allow myself to do as much I can on the better days with out pushing myself (that is sure to send me to bed for a couple of days). On the really bad days I don't do very much.
I'm glad you have a supportive husband. That makes all the difference in the world. Mine helps me to not feel guilty about not doing as much as I think I should around the house. As far as me not working, he really stood behind me and helped me focus on how much better my life would be if I stayed home and took care of myself, instead of pushing myself & getting worse.
I hope you get a break from the fatigue soon.
It is a vicious cycle, fatigue - depression - fatigue - depression. It I am flaring, I can't break out of it but if I am not - I just have ra - if I push myself to exercise it makes me feel a lot better. I have never gotten my pre-ra energy back. If I didn't have someone to help me in the house and yard - I would have a hard time breaking out of that cycle. If I am too tired to cook - I have food delivered. Now I live alone most of the time so I can get away with that. For me - the antidepressants do help with the energy but I am not even close to where I was pre-raIt is the illness that is causing it. We all seem to have ups and downs with. If it becomes overwhelming, then a visit back to your doctor to discuss alternatives to try is appropriate. When the illness isn't under enough control, the fatigue and the pain will be worse.
But I haven't heard of anyone getting pre-RA energy back. You do have adjust your life and your expecations at what you can do.
The twitching that you mentioned in your legs might not be connected at all to your neck problems. A lot of us, including myself, have Restless Leg Syndrome. Our legs just twitch uncontrollably especially at rest. This can make it harder to get rest and increase your fatigue. Fortunately, this is one the thing that can easily get under control with a couple of medicines. There are some news on the market that are targeted just for that.
You might want to call your doctor's office, especially since you've just seen them and ask about this. If you can get that calmed down, your rest might improve and thus your energy.
Ah, the fatigue. For me the fatigue is worse than the pain. I hate being exhausted all of the time. From Nov. to Feb. I only slept about 4-5 hours a day (naps included) because of Prednisone. Fortunately I'm retired and we were being beach bums in Mex. I wouldn't have been able to function in the real world. Now that I'm weaning off Pred. I'm sleeping 8 hours. I don't believe even in remission, that we'll have our energy level back the way it was before RA. We can always hope......that's what keeps us going.A note on Prednisone, I've noticed the higher the dose that I am on, the less sleep I can get. Lowering it seems to improve that just as Lindy described.That is a LOT of sleep woman! Have you talked to your doctor about what level of fatigue is acceptable? Is there a line where it may be too much.As Deanna said, it sounds like you also may have Restless Leg Syndrome which is waking you frequently during the night (and despite its name, it can affect the arms as well). You should mention this to your Rheumy next time you see him/her.
Jeanne
usmmom,
Sorry to hear you have pericarditis. That is very painful. Are they getting you to a Cardiologist for all the tests. I've had it arguably (the doctors argue) 2-3 times now.
Take extra, extra care of yourself and get plenty of rest. You may be more comfortable sleeping propped up.
I believe Shanbr has had it too.
Adjustments definitely need to be made in your treatment.
Feel better soon.
Hey, that's me too! I can't decide if my life is more like a 2 year olds or a 92 year olds! At least I'm not in diapers yet.
I was going crazy with fatigue until my Dr. put me on Humira. I was in college and could sleep between classes, but studying was another story. I still get tired easily- going to the store, shopping. I usually just lay there on my days off. I totally understand though. My Ma used to wake me up to eat and use the bathroom and back to sleep I was. I even was on Provigil and I'd fall asleep on it. My favorite part of the day is still crawling into bed at night.