I know I have lupus. I know that rings fatigue but come on! Lately I feel like I’m ALWAYS so exhausted. I hate that the only energy I have gets me through the workday and then I get home with left to give y family. Just early to bed only to nt be able to sleep. I don’t even know if its the lupus or the meds now that keep me up and keep me always worn out.
Just had to vent a little to people who might actually understand.
I meant to say I get home with nothing left to give my family… Sorry for the typos.
I can totally relate to you. I was diagnosed with Lupus a few months ago (ish). It ALL started about 6 years ago with extreme fatigue. I would go to work, then come home and I HAD to just lie down. It was so bad that my neighbor was outside one day and started to chat with me and I had to (embarrassingly) just tell her I needed to lie down for a while. Then I had to abruptly end the conversation to take a nap. I also have 2 kids (one at the time).
I would sleep for 14- 16 hours on the weekends every day (or more) AND take a nap. I felt SO GUILTY because my husband had to take care of things while I slept and nobody understood why I was always tired, including myself. So, it created a lot of friction in my marriage as well. I would take a shower and then be so tired I had to lie down before getting dressed. No social life, that was the last thing on my mind. Anyway, I had a sleep study done which I was praying would show an abnormality so that I could do something about it. Nope. I slept like a baby (knew that). Apparently with all the appropriate REM cycles, etc.
Next, blood work showed anemia, thrombocytopenia and leukopenia. Iron pills did not work so I had to have an iron transfusion. STILL TIRED. And very frustrated. Then, my PCP finally tested my ANA, which was positive and I was referred to a rheumatologist, after seeing a sleep doctor and a hematologist. I started taking Provigil which changed my life at the time. I could finally STAY AWAKE during the day. It was awesome! I would recommend trying it if you haven;t already. It worked VERY well for me, although I have to say that it hasn't worked as well the past year or two (maybe tolerance...?)
Unfortunately, since then I have developed more symptoms other than just fatigue (generalized pain, Raynauds's, rashes). So, now I take Plaquinil and several other meds. I UNDERSTAND your frustration! Sorry about the long post but I guess I needed to vent too, lol! I hope you can find a solution and I highly suggest you talk to your doc about Provigil. It is expensive but if you get a RX I can tell you the name of a reputable Canadian pharmacy where I get mine in generic form for MUCH cheaper.
It is hard when your friends ask you to go out with them, and after so many "no, I'm just too tired" they stop asking. Or when your family expects you to stay home while they go do something. It is not easy, but I guess we do what we can. Best wishes to you!!!
I too have suffered from the debilitating fatigue- sometimes so bad that I can’t even get out if bed to go to the bathroom. So tired that eating was a chore so I drank milkshakes and ate yogurt all the time, anything I didn’t have to chew. I have tod my docs I would prefer the pain over the fatigue anyday (I would actually prefer neither!) I went to my sleep doc (i have mild apnea) yesterday and he prescribed me Nuvigil. I will try it today. It cost $467 for 30 pills but my doc gave me a card from the manufacturer and the first 30 days was free. Yippee! I love free. Anyway, the pharmacist said that I should keep the card and the next four months would only be $25 a month. So, I am going to keep that baby in a safe place. Anyway, I will try the Nuvigil today and hopefully it will help. Hugs, MB
Hello Texasgirl,
Sorry to hear how your feeling but this is one major issue with Lupus (Fatigue) and if you are able to do anything please pace yourself and rest in between.
Lupus can also cause you not to sleep where the exhaustion is concerned but can also cause insomnia which is then another big issue on top because when you do want to sleep you've got that stopping you.
I'm adding some info below on understanding the exhaustion and fatigue.
Large hug Terri :)
"Understanding Fatigue in Lupus"
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.[1] 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.
New Research
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology.[2] 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.
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
Wow! Thanks everyone for the great responses. This was my first post and I feel so much better just knowing some others out there understand.
Thanks for that info! I was just telling my doc yesterday about my fatigue. Hopefully the nuvigil will Help. Hugs MB
Tez_20 said:
“Understanding Fatigue in Lupus”
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.[1] 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.
New Research
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology.[2] 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.
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
Hi Texasgirl,
Your welcome and we truly understand what your going through and we deeply support one another through whatever issues.
Terri :)
Texasgirl said:
Wow! Thanks everyone for the great responses. This was my first post and I feel so much better just knowing some others out there understand.
Hi MB,
I ope the medication suites you and works well but keep an eye out for any of these side affects according to what other meds your on and keep we updated on how the drugs working.
All the best Terri :)
MBPP said:
Thanks for that info! I was just telling my doc yesterday about my fatigue. Hopefully the nuvigil will Help. Hugs MB
Tez_20 said:"Understanding Fatigue in Lupus"
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.[1] 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.
New Research
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology.[2] 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.
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
Thanks Terri! Hugs
Tez_20 said:
Hi MB,
I ope the medication suites you and works well but keep an eye out for any of these side affects according to what other meds your on and keep we updated on how the drugs working.
All the best Terri
MBPP said:
Thanks for that info! I was just telling my doc yesterday about my fatigue. Hopefully the nuvigil will Help. Hugs MB
Tez_20 said:“Understanding Fatigue in Lupus”
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.[1] 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.
New Research
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology.[2] 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.
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
Tez, thank you for posting that great information. Very informative.
Hi Alex,
Thank you and i hope it's helped...i think i'll do it as a discussion with a few members besides yourself thanking me for it.
Hugs Terri :)
Alex said:
Tez, thank you for posting that great information. Very informative.