I have never been so tired in my life. Today at 3:30p.m. It felt like I hit a brick wall. So I took a break from work and went outside in the pouring rain and raked more leaves. When I get fatigued I try to fight it. I feel if I lay down and rest, I won't be able to get back up and will be even more fatigued.
I have been on Plaquenil for two weeks now since my SS diagnosis. Any advice on how to handle fatigue? I do not believe in laying down and watching TV and becoming a couch potato.
Thanks.
I so feel your pain! However, I have to say I kept fighting it and I landed in the hospital with complete exhaustion. I now take 15-20 minute cat naps that really help me. I have also found eating an apple helps. Hang in there, hopefully the Plaquenil will help soon.
I hear you about not wanting to give in, but tiredness and fatigue can be quite real, and you may make things worse if you push too hard.
What about a 20 minute nap, or a less energetic changeup from what you are doing - maybe something that's less physical than raking. Sorting laundry, or checking for the mail, or jotting down a grocery list?
You'll see many a story here about dealing with fatigue. You'll find with time what works best for you, but since this is relatively new for you, let me say that I've certainly struggled with "not giving in". Kept going to work even though there were days that I couldn't stand up for more than 5 minutes a time. Finally realized that I had to give in, as my body just wouldn't go any more.
I'm starting to get some results from the plaquinel now, and it's pretty good to remember what "normal" feels like.
Hi. I can relate to your pushing through the fatigue. When I felt real bad I would force myself to walk around the block a couple times. It was somehow very important for my mental state...
Give the Plaquenil at least 8 months to start kicking in. Sounds impossible, but it really took 10 months for me. I was very woozy and fatigued and swore the darned stuff wasn't working. It's much better now. :)
Can your doctor put you on prednisone for a few weeks? It might kick the flare that you seem to be experiencing. 5 mg for two weeks tends to work for me.
The plaquenil can take a while (usually a month or two, though as Babs says, it can be longer) to really start working, but that will probably help, too, once it does.
Male with Sjogren's,
I haven't found anything to help with fatigue and when I hit that brick wall I must lay down or I feel like I'm going to collapse. Not even the prednisone I was taking a few weeks ago help my fatigue. The plaquinil did help with the joint pain and stiffness, but not the fatigue and it took a couple of months for it to work.
You really should ask your doctor why your nose is so red and swollen, could be part of your problem.
LOL!!! Epson - you sure did give me a good laugh!! Thanks! ;D
Although I had a bad reaction to it, many people swear by Provigil. Ask your doctor about it. It is supposed to help with fatique. I think we all know about that fatique. Its a kind of fatique that goes from your body right to your brain. When I'm fatiqued like that I can't even formulate my words.
I fight fatigue and joint pain all the time. About a year ago, I couldn't decide about going part-time on my job, which can be very physical. Well, I finally decided to "listen" to my body and cut back to "4" days instead of 5-6 days. Not great, but definitely better. Fatigue can affect your mind as well as your body and last winter I drove off the road because I think I just lost concentration! I went through a whole memory battery and the final result was "FATIGUE"! Listen to your body and rest when you can. Fatigue is a big issue with SS sufferers. I not only take Plaquenil, but Cellcept as well! That's an immune suppressant. I still suffer from the above. I just live with it as best I can :)
Barb
I agree--the fatigue can't be beaten. I've learned to just go with the flow and kick back until it passes. Yes, for me too it hits hard at 3:30--you can set your clock by me. For years before the dx, I forced myself to get going. It's not worth it. Take care of your body.
Wow....I'm just up from my 330pm nap as well. Thats the time it hits me as well!
Yeap! Around 3:30 for me to, if not before! I went a few months of feeling on top of the world, but I've noticed the past week I am running out of gas. Trying to stay on top of it before it gets me totally down again and my joints and muscles deside they wantin on the action.
Today was my off day I've spent it in bed, not much for the mental side and after a while body wants up, but soon needs to lay down again.
I'm one who swears by provigil...my neuro prescribes it for me and it has been my lifesaver.....if I didn't take it I don't think I would have the stamina to work a full time job like I currently do! It has really helped me!
Maybe reading these posts will be helpful to some of you as well...its a fun thread I started quite a while ago....
https://sjogrensworld.org/index.php?topic=9221.0
I feel the fatigue during slow, boring meetings. I more or less shrug it off to just being bored and after lunch time. When i feel it coming, i get up, move around or leave the room. In most cases, i can do that. I very rarely nap except in the carpool.
i'm off the plaquenil and wonder how that might change things.
I do try to just push myself through the fatigue. it seems to work for me.
good luck
Dave
I'm just amazed when I hear of you all that have full time jobs. Gold Stars for all of you. I just don't know how you do it. Perhaps it depends on how Sjogrens has effected you. I just know there is no way I could work a full time job. I never know how I'm feeling from day to day and when the fatique hits there is no way to push through it. My brain just closes down and I can't even speak. Hats off to you!
I too feel the wall around 5 pm and it's all I can do some days to not fall asleep at my desk. I used to go for the full caffeine drinks about that time, but then the reflux would just reek havoc...some days you just can't win. Anyway, I just try to power my way through it and hope for the best.
I also use Provigil (and it does help), but it is a bit expensive and only use it when I need to be in meetings and don't want to do the "face meet desk" routine, not pretty (especially the snoring part ;) :D).
Hang in there, and take it easy -
Patze
Billydude, when I was first diagnosed I was in a bad way. I was so tired and weak and light-headed. If I did 30 minutes of yard work I had to rest on the couch (not sleepy though) for a good hour. Any stress at work and I felt so sick I had to leave early, and wondered how I'd drive the 12 miles home. It was touch and go. Thanks to the Plaquenil and Medrol I have improved. I still feel the underlying illness, and have rough patches, but at least I can function. ::) Take care!
Boy, isn't the fatigue just a killer?! I was dx with Sjogrens around 10 years ago, though it took 2 years to get a dx, and I'm still not used to the fatigue. I think about crawling up on my desk and resting at least 10 times a day at work, then I go home and I'm worthless - on the couch or in bed, getting nothing done. If it wasn't for drive thru my son would probably starve to death.
I also find that any stress makes me feel exhausted and poorly. I work full time as a teacher and I really struggle a lot of the time. It's hard to know if its the work load or the illness or the combination. I suspect the latter. There is no easy way to deal with it but people do. Good luck, hope the Plaq kicks in soon.
Beverley
I'm newly diagnosed but I would swear I've been dealing with sudden and fierce fatigue for years. It does feel like you hit a brick wall. I can be going along fine the all of a sudden I'm so horribly tired I need to sleep. I work about 45 hrs per week, and when it hits me at work I just have to fight through. I eat a light snack to help (fear of chocking keeps me awake haha) and try to move around a bit more. Then I make sure that I go to bed that night a bit earlier then normal. With me it's become this routine, and upping the sleep for a few days puts me back to rights again. At least until the next fatigue flare.
I am newly diagnosed and I am fighting.
Diet has been very helpful.
I jog before breakfast.
But I still can get drousy just after breakfast...
Squeeze half a lemon into a 1/2 glass of water.
Drinking this make the body react as if you have a strong cup of coffee!
Ami
Ballerina:
Citrus fruits are acidic and dry out the mouth. I can no longer drink orange juice. I am sure the lemon water would have the same effect.
Hi MWS,
I don't drink fruit juices (other than a little slice of lemon in my water/tea) as they just burn the heck out of my throat, and let's not mention the havoc that they do to the stomach.
Patze
You may be right there.
I never drink juices because of the high sugar
and orange juice is too hard on belly.
I was just hoping the lemon thing would wake me up.
Do you drink coffee at all?
Hi Ballerina,
No, I don't drink regular coffee as I don't really like the taste of it. Now if we're talking foo foo coffee's, I'm there! ;) :D
Patze
Patze
That's interesting that you don't like regular coffee. I used to love coffee, but since the dry mouth came along, I can't bear the after taste. I stick to tea now.
Kathyx
Ballerina: Caffeine is supposed to also cause dry mouth. I do not like coffee but like tea. I drink non-caf tea.
However, chocolate has caffeine. I will never give up chocolate!!!!! :)
MWS,
I'm right with you on the chocolate....I don't drink coffee or tea and but love my diet pepsi (the decaffeinated type).....but will NOT give up my chocolate even though I try to keep it to a minimum! :D
Isn't chocolate supposed to be a food group? ??? ;)
Patze
Chocolate is definitely a food group, I think diet Pepsi is too!
I never liked coffee but am a tea drinker..... :) RobinBat
I have suffered from fatigue much of my adult life and had to finally learn to give in and lie down. I wasn't much for watching TV years ago and can now(in my old age) dose off no matter what if I am tired.
Years ago I would get so tired I felt like I would pass out and the only way to recover was to lie down. I learned to keep an egg timer under the couch and when I would lie down I would set it for whatever amount of time I felt I needed. Sometimes it was 20 minutes and I would get up and go back to work. Much of the time I did not nap but the rest seemed to just make the biggest difference.
Since I have been home now I keep an egg timer and alarm clock on the end table and if I want to rest or nap I set one of them. If I don't set these I have on occasion been known to have no supper on the stove when hubby came in. Don't try to be a hero, rest a little here and there and life will be much better. Irish ;D
I find that the mid afternoon nap or fifteen minute meditation gives me a new burst of energy and helps me make it through the day and into the evening. But I am a believer that some exercise/yoga, etc. is a help. Of course for me during a flare that is out of the question. Sometimes you need to just rest.
You know the hardest thing I find is that I get exhausted - hit that wall - but then can't sleep!!! What's that about?
Beverley
Yeah, Beverley - I'm like that too. My dh falls fast asleep just about as soon as his head hits the pillow and I just lie there wanting to do the same. Sometimes I get so jealous of him for that!