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- CommentAuthorvirlad
- CommentTimeMar 24th 2009
<p>I would like some tips on how others deal with the daily fatigue that drags me down every day.</p> -
- CommentAuthorvirlad
- CommentTimeMar 25th 2009
<p>As a lupus patient with three small children I found that by learning how to cook delicious meal with a crock pot I could prepare meals in the moring when I usually had some energy and then in the late afternoon I could take a rest before dinner. </p> -
- CommentAuthorvirlad
- CommentTimeMar 25th 2009
<p>Thanks for a great tip. I actually have a crock pot but never have really used it. You reminded me of something I have found to be helpful for those days that fixing anything is just too much. When I make a receipe I always triple it and then I freeze two meal portions for those bad days. </p> -
- CommentAuthorRAdar
- CommentTimeMar 26th 2009
What I learned to do when the fatigue was boss: listen to my body.
I know, I know...easier said than done, right?!
But, with adjustments to routines and fine tuning my ability to answer "how important is it?", I learned how to nap when my body told me to, or at least sit and relax. At first it seemed like such a time-waster, and I would just look around at all that needed to be done. But when it would be so bad, I couldn't even imagine answering the telephone (!), I would grab my cozy blanket and feather pillow and close my eyes. If I needed to sleep, it would happen. If not, I would just stay there for 30 minutes. I think instead of wasting time though, it certainly helped my overall pain and fatigue.
I imagine you have a way you do things...well, figuring that out took exactly what a fatigue-fighter needs to make it through the day: creativity. -
- CommentAuthorvirlad
- CommentTimeMar 27th 2009
<p>Thanks RAdar for some great suggestions. I also have found that pacing my self helps a lot. If I don't I pay the price later and then cannot get as mcu accomplished as I had hoped. My lupus seems to get control when I do not control it!!! </p> -
- CommentAuthordhiggs
- CommentTimeMar 30th 2009
<p>It's so frustrating feeling tired ALL the time. I work full time and am usually in college full time, I was just lucky to have this semester off. I am a health care worker so an 8 hour shift feels about like a 12 hour shift to me. I sleep about 10-12 hours a night and it doesn't help. I even sleep more on the weekends when I don't have work. My family keeps telling I sleep too much, but I can't help it I'm just so tired, and in pain.</p>
<p>Is there really such a thing as too much sleep?!</p> -
- CommentAuthorvirlad
- CommentTimeMar 31st 2009
<p> Doing two fulltime activities in one day, anyone would be tired let alone a person with an illness. Have you considered partime school perhaps be a better alternative. I once had to give up a job I really loved because it was too much and I was contantluy in a flare and the hospital. It was hard to do and it depressed me as I was working with sick children which I really enjoyed. However, the risk of infection for me was high. The only problem was but in the long run I did much better. Too much sleep leaves me feeling druged. Short naps work better for me but that would be hard to do with your schedule. </p> -
- CommentAuthorbbw0827
- CommentTimeApr 9th 2009
I think the most frustrating thing about any autoimmune disease is the fatigue factor. I am still trying to learn how to balance my activities with resting when I need to. It is especially hard when people don't understand that you need to rest because you look fine to them. I am learning to listen to my body more and focus on myself instead of listening to others who want me to do things I know I'm not capable of. It's hard because I was brought up to learn that you should be busy all the time. At this stage in my life, that just isn't possible. -
- CommentAuthorGenloop
- CommentTimeApr 9th 2009
I have lupus and one of my biggest problem is the fatigue. If I do anything out of the nomal day I have .It takes me days to recover. Just to go to the doctors, takes so much out of me.
I do lay down everyday. I don't sleep but I do rest. I also try to do a little each day. Not to do everything all at once. As for traveling. My husband drives long ways. But like I said it takes me days to recover. I hate the fatigue.. -
- CommentAuthorbbw0827
- CommentTimeApr 9th 2009
Genloop - I totally understand your fatigue issue. Since being diagnosed with RA about 15 months ago, my fatigue has been overwhelming. That's how I knew something else was wrong with me before I went to the doctor, I just couldn't make it through the day without needing to rest. My arms and legs feel like concrete blocks some days. I work just 9 hours per week and I take two college classes. The rest of my time is spent going to my doctors and just doing the everyday things that have to be done. It is hard because I can't ever make plans very far in advance since I never know which days are going to be really bad. It also takes me a long time to recover from anything out of the ordinary. Sometimes I end up in the ER with high BP and heart rhythm issues along with shortness of breath when I push myself too much. I'm glad to know that it's not just me. I feel like a big wimp most days
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- CommentAuthorGenloop
- CommentTimeApr 9th 2009
bb0827,
I think that is what made me think something was wrong with me before I was dx. with lupus. The faigue is something. Its not like you can sleep its bone tired. Tired that you need to lay down to get the rest. So bad... -
- CommentAuthorSnowshoo
- CommentTimeApr 9th 2009
Yup, yup. The fatigue gets me, too. It is not something you can explain to anyone who hasn't felt it. You have to learn to take care of 'me' sometimes and learn how to say 'NO'. My husband has been thru a couple of bad times with me, so he,not necessarily understands, but accepts when I say 'I can't'. As do my friends. Fortunately, my kids were older when I was dxed, so I haven't had to deal with young children and fatigue. My work place is super. I work in a kitchen, so I can go in early and take extra time, if I need to. When the fatigue is worse, so is the 'brain fog'. People don't seem to accept that as well. The forgetfulness and 'dumb looks' I give a lot because I can't listen and concentrate are really hard to get around. I carry small notepads and sticky notes with me all the time!! They're lifesavers. -
- CommentAuthorLori_greenacres
- CommentTimeApr 10th 2009
Wow - I never realized I was a "fatigue fighter"
It was great to read all your concerns and issues in dealing with fatigue - and to find out it is OK to rest.
It is hard to accept I am different and I do need to rest more often (even if I fight it I am going to try listening to my body more!).
Thanks. -
- CommentAuthortarnishedyears
- CommentTimeApr 13th 2009
Feeling exausted and in pain, I felt like a hypocondriac until the diagnosis last year of RA and AS with a diagnosis I have had for years of Chron's. I have learned that if I decide I can do something myself, I end up hurt more that if I asked for help. After 9 foot fractures in 3 years we have found a medication plan that works better for me and if I am tired...rest! This I find difficult as I begin to feel useless, needy and not a contributor to our family. -
- CommentAuthorTakbeer
- CommentTimeApr 13th 2009
I don't know who sent this site to me but I'm so glad they did. It is so hard making people understand "fatigue". Especially when you look "fine".
I'm very fortunate to be able to rest whenever I need to. I too, had to learn to listen to my body.
I went undiagnosed for 15 years w/dermatomyositis. (can you believe that?)
Finally, in 2003, I walked off the job, went to see my doctor, and told her I couldn't take it anymore. I told her I needed something for pain and didn't want to be put to sleep or made groggy. I had to work. She gave me percocet. I know no one wants to be on those types of drugs, but nothing else helped. My muscles were getting weaker and weaker. They were being attacked by my immune system, unchecked, for over 15 years. I'm hoping someone will come up w/a way to change this terrible habit my immune system has.
We went through a regiment of doctors and finally I was diagnosed.
I know now that I was dealing w/this when my children were younger but they are all grown now. I can't imagine haveing to take care of children, work and/or go to school full time.
I'm very happy to have this forum. I've sent it to family and friends. Hopefully they will look and see I'm not alone.
Thanx -
- CommentAuthormjhay
- CommentTimeApr 14th 2009
The fatigue is the worst. Sometimes I sit and look around and tell myself to get up and put something away or to wash a glass, and I continue to sit. I told this to a health care professional and she told me to just get up and do it; don't think about it. I guess I would if I could. It gets really old quickly answering those who ask you how you are feeling, 'Not so well today'; so instead I say, 'Fine'. How many times can or want to explain. I work full time and usually get through the day ok if I don't have to walk too much, but I practically collapse at home and just sit until it is time for bed. I very luckly that my husband is retired since he does the shopping, cooking and laundry(I can't even imagine doing the laundry, going up and down stairs);and so then I feel guilty that all it all falls on him. I am just sick and tired of being sick and tired! -
- CommentAuthorgail
- CommentTimeApr 14th 2009
I know just what you're talking about when you "continue to sit" and can't get up to accomplish even the smallest glass. Just tonight it took me an hour to get out of my chair and go get undressed for bed. It felt like an enormous (sp?) chore. I've had a busy running around kind of day. No real hard task except to fight traffic. Tonight I'm very tired. However, it's refreshing to be able to read your posts so that I know I'm not the only one just being too tired to move. thanks to all of you -
- CommentAuthorvlwood
- CommentTimeApr 18th 2009
To dhiggs, no, despite many claims that are made, I don't think, from my own experience, that there's such a thing as too much sleep. When your body has had enough sleep, you wake up and don't want to sleep any more. Remember when that used to happen? And yes I've been through months, maybe years, when it seemed that would never happen again. But finally it did. All I can say is, do everything you can to try to get healthier, One of the ways your body does that is by sleeping. When you're sick, you need more sleep, and your body will let you know. Oh, I still tire easily, but at least I'm finally out of that dark hole when all I could do was sleep. Our bodies do try to heal us if we let them. Good luck with it! -
- CommentAuthordoodlehead
- CommentTimeApr 29th 2009
I can really relate to everyone here. I am constantly tired, at first I thought it was because I wasnt sleeping well (geeze what causes that, pain,stress from years of going to drs and being told they dont see anything physically wrong, must be in your head heres some happy pills, not being able to do ordinary things let alone anything extra) I am not to the point that I can sleep more than 4 hrs at a time. I wake up with either hip, shoulder or arm pain(they fall asleep when I do) I have learned to relax now that at least Im moving forward with my diagnosis and treatment (still have unresolved things but have learned through this long process that I am not the only one on this rollercoaster, funny how that helps) . Maybe someday soon they will come up with a complete cure for all this stuff, untill then I will take my little happy pills and settle for 4 hours at a time. -
- CommentAuthorschmutzy
- CommentTimeApr 30th 2009
When I wear a comfortable pair of tied shoes, I feel I am able to complete more activities. Wearing "pretty shoes', flats of course, make my feet tired before I begin. -
- CommentAuthorging915
- CommentTimeMay 1st 2009
One of the things I have found that makes getting up and doing something so difficult is if I sit too long I seem to become very stiff and when I finally get up it takes me about 30 steps to actually be moving well. This seemed very strange to both me and those around me. I asked my rheumatologist why this happens and he told me that when I was setting the fluid would accumulate in the tissues and when I got up and moved, it was pushed back into circulation. He said it was like "jelling" and was due to the systemic inflammation. I try now to sit more that ten minutes at a time. Because of fatigue I do take many ten minute breakes. As for the mornings when I have to get up I plan on at least being able to stay in bed for twenty minutes (take my meds first thing) and I make sure I move my legs and hip around and sit up - this make actually getting out of bed and moving into morning activities eaiser. Hope this helps- a 35 year lupus plus other AD survior. -
- CommentAuthorging915
- CommentTimeMay 1st 2009
Sorry, I meant NO more than ten minutes!!! -
- CommentAuthorlbvarga
- CommentTimeMay 6th 2009
Amen, everyone. Laying here in bed with a laptop because I am just bone-weary tired after a "normal" day yesterday. I used to do so much and now my world has really shrunk :) I know I'm doing alot (2 boys ages 5 and 7) and I watch my 2 year old granddaughter one day a week, huge house to take care of, Avon business, etc....I wish I could feel like I did 5 years ago...sigh -
- CommentAuthorandie125
- CommentTimeMar 14th 2010
I have lupus and CFIDS almost to the point of being narcoleptic. I have 3 boys ages 2,1 and 3 months so I often have to ignore my body telling me to sleep. I do try to get all 3 to nap at the same time so I can too! My dr. recently put me on phentermine which is really helping. I am still tired, but not so much so that I can only grab a cereal bar for my kids to eat. I have found that if I make sure the kitchen is clean that I tend to feel better the next day. Also, I set a timer for 5 minutes at a time to do chores. That way I can make sure that I will take a break to rest, check on the boys, play with them, etc.
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