I was just diagnosed with Lupus after I woke up one morning in mid-November with painful feet, knees and fingers. I am on meds twice a day and right now not having much pain anywhere but my fingers. But I am so tired! I'm wondering if others have experienced that? I get a FULL nights sleep almost 9 hours a night, but still wake feeling tired and by the end of the day I am exhausted enough to take a nap. This isn't usual for me and while the pain/swelling in my fingers is tough...I think I am having the hardest time with the exhaustion. Trying to push through it all....but just want to sleep. Any suggestions/comments? Thank you!
I myself battle with this. I feel guilty but I have been sneaking in a nap after lunch and that seems to help me get through the day. I do not think you are alone i am newly diagnosed so I am not to sure how common it is.
I also battle this. Seems to go along with Lupus. Hang in there and feel free to chat about it.
Hmmmm. I just thought it was my medications and my life zonking me out. I didn't realize it could be from the lupus. On the other hand, dealing with pain and limited functionality is exhausting on its own!
Lupus fatigue is very common. When I was first diagnosed I needed 14 hours of sleep. Some of the things that helped me was taking a nap or resting in my car before going into a store or napping for a little while on my lunch break. If a nap wasn’t possible I’d just put my head down on my desk to rest. My body used to feel so tired at times that just the act of holding itself together felt like too much. I used to wish my body could just melt into a puddle! Now that I’m no longer working I can rest as much as I need to. My kids are no longer little, so they don’t depend on me as much. Try to rest whenever possible and do what you can when you can. Lupus is a balancing act.
Welcome. Your aches, pains and symptions are a part of. Life With Lupus. I am very fatigue, in morning the bottom of my feet hurt. My joints hurt, hands swell due to being on a desktop comouter 8 hours a day at work.
I dont sleep much, due to prednisone & methotexrate I have to inject myself with.
Hang in there for you newbies, and welcome to the best support group I have ever been on. There are always responses to everyone who writes how they feel, questions about meds or symptons if they are normal.
There was a big write up posted by Tez_20, its great. Everything from meds, symptons, all the side effects, etc.
I found it very useful. Was diagnosed n 2000. The article was the most information I had in my 13 years battling
The fatigue is my biggest problem.. Working so I play catchup on the weekends where I sleep or try too but it's weird for me as I'm not a napper
I have had to close the office door just to have some quite time at work but nothing like the nap
Robert
Yes i always was one to need 8 hours ...with lupus on average i slept at least 10 hours per night. I use to hate summer when i was so exhausted but was still light out lol! With fibro..pain is so much worse and different that if i sleep 2 hours at a time it is major thing! It is different kind of pain plus fatigue...this is literally lack of sleep...where lupus is genuine fatigue. Both are bad....worse when both kick in.
My first rheum insisted i learn how to take 'cat naps' as he said that is how he survived medical school...so it would greatly help me to learn how to nap often...even while waiting for doctor etc.
I also learned hypnotherapy which i still use today to help with pain and relaxation. Meditation is excellent way to get your mind off pain plus fall asleep or relax.
I also suggest you try a local support group....for lupus or chronic diseases or some kind of women's health group.....find out who are best massage and physical therapist. Both can help you out greatly with any physically plus massage is great to get near end of day and help one sleep. Plus, find out what exercise classes others are taking and teachers know how to help those with chronic diseases. A group can just help in many ways and you do not have to go all the time if you do not want too.
If you are new to any chronic disease, be gentle on yourself and have some compassion...you are told some very bad news that is going to effect your life hopefully in your life time there will be cures or better treatments..but effect it long time for now.
IT takes on average about 2 years to really get feel of it and how to deal with it. One thing that most new people make is that every time you do not feel well it now is...is this SLE? or just cold, flu etc. People with chronic diseases just get sick like normal healthy people so try to relax and and think about it rationally if you can. Post if would like others opinions but remember that often it just will be bug.
If you can find a counselor/ therapist(ask in group again or rheu) for name of ones that deal with chronic diseases...as they can be worth their money in gold....they can teach you so many tricks and tools it is best investment i did for myself....besides the hypnotherapist.
So you are not alone....and i hope your SLE for all you that are new is mild in your life time which will be bad enough! GOOD LUCK
I too battle also with same situation since I was diagnosed with Lupus Dec2010. I am always tired, but cannot take a nap or I will be up all night. I have had some problems recently with a brain scan, 2 MRIs which I found out I have 2 herniated discs in my neck and a torn rotator cuff, since I fell a couple of months ago. My pain radiates down my neck into my fingers and hand. Its hard to be on computer. I now take predisone for the swelling, but my weight is swelling not my fingers. High blood pressure pills, Plaquinil, Gabapapin, baby asprin for a blockage in my heart. Before Lupus I was the picture of health. When I found out I had Lupus I went to bookstore and bought books explaing about the disease abd bow still read them all the time. They are very helpful. It feels good to have people out there with the same problems to chat too anytime.
Thanks so much everyone! This is really helpful to hear your stories and to know I am not alone in how I feel. I think I'm just beginning to realize that I need to pick and choose what I need to do, and maybe, just maybe I can't do it all. Need to work, need to take care of me, need to take care of my family. I am in school part time in the evenings and I'm thinking that may have to stop at least for a while as my fatigue is great at that time after holding it all together all day.
Here is an article on lupus fatigue for all the newly diagnosed. I’m also including the link.
As the years go by, you’ll begin to understand how lupus affects YOUR body in particular (everybody’s symptoms are different), then you’ll be able to help others, too by sharing the wisdom.
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
If you have lupus, you probably know how bad fatigue can be. It’s one of the most common symptoms reported by people with lupus. Most lupus patients suffer with it. But exactly what causes this fatigue that goes far beyond just being tired?
A study done at Hospital for Special Surgery some years ago suggested that depression and sleep problems might contribute to fatigue in people with lupus. But in the women studied, those who had lupus did not have more depression than those who did not. However, those who had lupus took longer to fall asleep - and slept for longer periods of time.
Over the years, other researchers have also tried to figure out how sleep and depression might play a role. Others have suggested that lack of exercise might be involved - because exercise can actually give you energy when your muscles get fit.
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology. They studied 100 women with lupus. The women were given a series of different tests to look at:
the type of their fatigue,
how bad their fatigue was,
how bad their pain was,
whether they were depressed - and if so how badly,
how well - or poorly - they slept,
how much physical activity they did in their leisure time,
whether they were satisfied with the support they received from family and friends.
Finally, the women were examined by a doctor to see the level of their lupus disease activity and the impact lupus already had on their bodies.
*What They Learned
As in other studies, they found that people with lupus have much more fatigue than others.
Fatigue can be influenced by everything they explored and more: depression, pain, quality of sleep, quantity of sleep, exercise, severity of illness, and satisfaction with your social support network - as well as flares, medications, and stress. And it varies from one patient to the next.
Because fatigue arises from so many different factors, they said treatment should try to find out what factors were involved in the patient being treated - and treat all of them to get at the fatigue. These factors can be treated - modified - changed.
*Two Types of Fatigue
One thing that was different about their study was that they separated physical fatigue from mental fatigue. Many other studies have just looked at “fatigue” as one thing.
Think of physical fatigue as “I’m too tired to stand up,” or “I just can’t walk another block.” That’s easy to recognize - and you should listen to it. Rest. Sit down or just collapse in bed for awhile.
Mental fatigue can be more difficult to get a grasp on sometimes. “I can’t think straight” or “I can’t concentrate” or “I keep rereading this paragraph again and again” may be mental fatigue. Or it may be a sign of the cognitive (thinking) difficulties that are part of neuropsychiatric lupus. So any changes in your thinking or concentration should be reported to your doctor - because a change in medication may help. In the meantime, again, rest. Put the book down. Veg out in front of the TV. Cuddle up with your pet. (Studies have proven that stroking a pet can be very relaxing.) Or take a nap.
*Physical Fatigue
It was not a surprise that people with more pain and poorer sleep were more likely to have physical fatigue.
Lots of research - in people without lupus - has shown exercise helps reduce depression. But this study had an interesting surprise. Only the lupus-fatigued women who did not score high on depression tests seemed to be helped by exercise. Lupus-fatigued women who were depressed did not get an improvement in physical fatigue from exercise. Does this mean you shouldn’t exercise? No! You need exercise for heart fitness, muscle strength and to keep up your energy. It may even help your physical fatigue - because a finding from one research study doesn’t apply to everyone.
But look to other means as well. Talk with your doctor about ways to improve your sleep and lower your pain level, especially by reducing your disease activity.
*Mental Fatigue
The factors most related to mental fatigue were slightly different. They were clearly:
greater pain severity - again, talk with your doctor about how to reduce your pain level;
higher levels of depression - ask your doctor about referral to a licensed psychotherapist such as a social worker or psychologist. In some cases,r antidepressant medication may also be useful.
lower satisfaction with social support networks - talk with family and friends about what you need from them. Often they may not be aware of how you are feeling inside. Let them know what can help. Establishing an understanding together of the impact of fatigue and how to problem-solve around this is important.
*How Do You Cope
Fatigue is profound. It touches you to the core. It can totally disrupt your life. Fatigue itself can be stressful and fatiguing. Because you cannot “see” fatigue, and it can change so much from hour-to-hour and day-to-day, your fatigue can also be confusing to those with whom you live and work. But it’s not something you can point to like a swollen joint or a rash. You can be exhausted with fatigue and your friend or family member says,
*"You look great."
This can be very frustrating. You feel that others just don’t get it. Over time, see if you can learn to respond comfortably and assertively to such comments. "I wish I felt as great as I look - but I’m really fatigued right now, and it’s important that I rest and take care of myself."
Those words may not be right for you - but you need to find the words that are. Because when fatigue hits, you need to let go and rest. Give in to fatigue when necessary - so you can spring back. Take that temporary break - so you can stand up and think clearly later. Whether it’s an hour later or a day later doesn’t matter. You will find the right moment. And only you can. Because lupus fatigue is different for everyone - what causes it, when it hits, what helps, when it goes.
Be kind to yourself, work with your doctor, and you will find the path that’s best for you. Just don’t give up.
Thank you for sharing this article...I was diagnosed in 2011 and am still trying to figure out how to manage this new life. I've tried to describe my fatigue to others, and just can't come up with the right words...this was a great article for me to share with others.
Keepkeepinon said:
Here is an article on lupus fatigue for all the newly diagnosed. I'm also including the link.
As the years go by, you'll begin to understand how lupus affects YOUR body in particular (everybody's symptoms are different), then you'll be able to help others, too by sharing the wisdom.
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
If you have lupus, you probably know how bad fatigue can be. It's one of the most common symptoms reported by people with lupus. Most lupus patients suffer with it. But exactly what causes this fatigue that goes far beyond just being tired?
A study done at Hospital for Special Surgery some years ago suggested that depression and sleep problems might contribute to fatigue in people with lupus. But in the women studied, those who had lupus did not have more depression than those who did not. However, those who had lupus took longer to fall asleep - and slept for longer periods of time.
Over the years, other researchers have also tried to figure out how sleep and depression might play a role. Others have suggested that lack of exercise might be involved - because exercise can actually give you energy when your muscles get fit.
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology. They studied 100 women with lupus. The women were given a series of different tests to look at:
the type of their fatigue,
how bad their fatigue was,
how bad their pain was,
whether they were depressed - and if so how badly,
how well - or poorly - they slept,
how much physical activity they did in their leisure time,
whether they were satisfied with the support they received from family and friends.
Finally, the women were examined by a doctor to see the level of their lupus disease activity and the impact lupus already had on their bodies.
*What They Learned
As in other studies, they found that people with lupus have much more fatigue than others.
Fatigue can be influenced by everything they explored and more: depression, pain, quality of sleep, quantity of sleep, exercise, severity of illness, and satisfaction with your social support network - as well as flares, medications, and stress. And it varies from one patient to the next.
Because fatigue arises from so many different factors, they said treatment should try to find out what factors were involved in the patient being treated - and treat all of them to get at the fatigue. These factors can be treated - modified - changed.
*Two Types of Fatigue
One thing that was different about their study was that they separated physical fatigue from mental fatigue. Many other studies have just looked at "fatigue" as one thing.
Think of physical fatigue as "I'm too tired to stand up," or "I just can't walk another block." That's easy to recognize - and you should listen to it. Rest. Sit down or just collapse in bed for awhile.
Mental fatigue can be more difficult to get a grasp on sometimes. "I can't think straight" or "I can't concentrate" or "I keep rereading this paragraph again and again" may be mental fatigue. Or it may be a sign of the cognitive (thinking) difficulties that are part of neuropsychiatric lupus. So any changes in your thinking or concentration should be reported to your doctor - because a change in medication may help. In the meantime, again, rest. Put the book down. Veg out in front of the TV. Cuddle up with your pet. (Studies have proven that stroking a pet can be very relaxing.) Or take a nap.
*Physical Fatigue
It was not a surprise that people with more pain and poorer sleep were more likely to have physical fatigue.
Lots of research - in people without lupus - has shown exercise helps reduce depression. But this study had an interesting surprise. Only the lupus-fatigued women who did not score high on depression tests seemed to be helped by exercise. Lupus-fatigued women who were depressed did not get an improvement in physical fatigue from exercise. Does this mean you shouldn't exercise? No! You need exercise for heart fitness, muscle strength and to keep up your energy. It may even help your physical fatigue - because a finding from one research study doesn't apply to everyone.
But look to other means as well. Talk with your doctor about ways to improve your sleep and lower your pain level, especially by reducing your disease activity.
*Mental Fatigue
The factors most related to mental fatigue were slightly different. They were clearly:
greater pain severity - again, talk with your doctor about how to reduce your pain level;
higher levels of depression - ask your doctor about referral to a licensed psychotherapist such as a social worker or psychologist. In some cases,r antidepressant medication may also be useful.
lower satisfaction with social support networks - talk with family and friends about what you need from them. Often they may not be aware of how you are feeling inside. Let them know what can help. Establishing an understanding together of the impact of fatigue and how to problem-solve around this is important.
*How Do You Cope
Fatigue is profound. It touches you to the core. It can totally disrupt your life. Fatigue itself can be stressful and fatiguing. Because you cannot "see" fatigue, and it can change so much from hour-to-hour and day-to-day, your fatigue can also be confusing to those with whom you live and work. But it's not something you can point to like a swollen joint or a rash. You can be exhausted with fatigue and your friend or family member says,
*"You look great."
This can be very frustrating. You feel that others just don't get it. Over time, see if you can learn to respond comfortably and assertively to such comments. "I wish I felt as great as I look - but I'm really fatigued right now, and it's important that I rest and take care of myself."
Those words may not be right for you - but you need to find the words that are. Because when fatigue hits, you need to let go and rest. Give in to fatigue when necessary - so you can spring back. Take that temporary break - so you can stand up and think clearly later. Whether it's an hour later or a day later doesn't matter. You will find the right moment. And only you can. Because lupus fatigue is different for everyone - what causes it, when it hits, what helps, when it goes.
Be kind to yourself, work with your doctor, and you will find the path that's best for you. Just don't give up.
MJ,
At the top of this page, you will see a tab titled "Overview of Lupus". I highly recommend you read it as it is chock full of really great info.
I doubt there is a single visitor to this site that doesn't suffer some form of fatigue, especially during a flare. I personally have less pain in the joints than I have fatigue. This disease doesn't seem to treat anyone the same, some have flares for years, some never.
The good news, sweetie is you will find someone at virtually any time to talk with about your pain, your confusion, your anger, fear or whatever you may feel like talking about.
And although you may be "in bed" for 9 hours, you may not be getting uninterrupted sleep. I have made my bedroom a have of sleep. No tele, black out shades, lavendar simmer pot as well as lavendar linen spray. That to get a good nights sleep.
I take an extra B-12 (available everywhere) daily and sometimes 2. The way my doc explained it, is that B-12 is one that the body will take what it needs and gets rid of the rest. Also, check you iron levels. Anemia is VERY common and fixable.
If you are tired enough at the end of the day to nap...nap. Your body is speaking to you, please listen.
Check out some of the groups, there is the gluten & allergy free recipe section where you can look at recipes that are high in dark greens for iron and folic acid to help your body start absorbing the food you take in. Food is energy, but needs be the right type.
Please take care and great job asking a question after being here such a short period of time. you will fit in wonderfully,
XOXO,
DeAnne
Your welcome Island Girl. It’s going to take time to adjust to the “new” you, but one of the best things we can do for ourselves is to learn as much as possible about this disease so that we can pass this info. on to others and also not feel so lost ourselves. Support groups also help tremendously.
Island Girl said:
Thank you for sharing this article...I was diagnosed in 2011 and am still trying to figure out how to manage this new life. I've tried to describe my fatigue to others, and just can't come up with the right words...this was a great article for me to share with others.
Keepkeepinon said:Here is an article on lupus fatigue for all the newly diagnosed. I'm also including the link.
As the years go by, you'll begin to understand how lupus affects YOUR body in particular (everybody's symptoms are different), then you'll be able to help others, too by sharing the wisdom.
So sorry … I have been dealing with fatigue as well it seems to be part of Lupus. It is hard to cope with going from being " normal" to being fatigued all the time. Naps do help. Hang in there!
I was just diagnosed in December & I agree the fatigue is terrible. I have three kids & have a hard time keeping up without a nap. At least now I know the cause. I wish I had a suggestion for the fatigue. I just started on a low dose of adderrall for adult add and that has helped a little.
What two meds are you on for your lupus?
I think everyone hear can relate!! It is the most common symptom. I don’t know of any magic solution for it. The only thing I can say is that it takes time to figure out how you are now going to react to certain activities. I just took the time to really pay attention to my body and what it is trying to tell me. I have had to make a lot of adjustments to my lifestyle but for me compromising on the things I enjoy is better than pushing myself and ending up in bed with a fever and a flare. It is really hard to make these changes and to relieve yourself of the guilt you feel when you sometimes do nothing but it is unfortunately par for the course. It just sucks!!! One last tidbit is to have doc check your vitaminD level because if its really low it can make the fatigue even worse. Sorry you are going through it and sad to say you are not alone.
JC,
I understand completely. Although I didn't have an older family member who had it (that we were aware of) I think my grandmother did, but I also think her 2 nightly vodka tonics (quinine) helped her, I know that had I not found this site, I don't think I could go through this. Your time and input into this site is a wonderful tribute to your mother.
Thank you for allowing us to share,
DeAnne
John "JC" Colyer said:
I'm 50, growing up I knew the word Lupus because my mother had it but didn't know anything else.
I'd come home some afternoons and find my mom sleeping on the couch in the middle of the afternoon, that wasn't my mothers way ,now I realize it was the Lupus. I had no clue and my mother didn't understand, Dr's had no clue,seeing the support you give each other makes me realize how alone my mother struggled.
MJ,
Don't forget to have iron checked often. Anemia is one of the early indicators as well as one thing we CAN do something about,
Good luck,
DeAnne
John I wish things had been different for your mom. It’s too bad she wasn’t able to belong to a wonderful online support group where everybody is understanding of what the other is going through. I agree with what Deanne said about your time and input into this site being a wonderful tribute to your mother. She’d be proud.
John "JC" Colyer said:
I'm 50, growing up I knew the word Lupus because my mother had it but didn't know anything else.
I'd come home some afternoons and find my mom sleeping on the couch in the middle of the afternoon, that wasn't my mothers way ,now I realize it was the Lupus. I had no clue and my mother didn't understand, Dr's had no clue,seeing the support you give each other makes me realize how alone my mother struggled.