I'll be fine for a couple of days and having another good day and then suddenly BAM! fatigue hits me hard and I have zero energy which turns my mood grouchy and I'm in survival mode and just want to go home to sleep. If I'm at work, i get through the day and when I get home, collapse on the couch to sleep. If I'm lucky enough to be at home when it hits, I just go lie on the couch to sleep for hours. Do any of you get fatigue that hits fast like this? I get this several days a week. Normally, I'm an active person. Never got this until I got lupus.
I can be having an ok day, when out of nowhere the fatigue and achiness just washes over me like I've been drugged or something, I've no idea what happens.
Hi Lilac83
This is my opion I think on our good days we tend to over do it and then it catches up with us. I try and stick to a schedule even on the days I feel good and not over do it. I have gotten lost on my way home from work when this has hit so please be careful. When i worked I would lay out my clothes for the week on Sunday to make my mornings easier.
Yes I know what you mean . I have had lupus for over 25 years I am now 70 . Can,t plan anything anymore ... good thing I am retired now. There are days when I go shopping get in to the store and wish I had stayed home. I can rest sleep rest and still be tired and have lots of pain .... it sure is not fun anymore.
I have to be a scheduled person. In fact my family is as well just to compensate for me. I still hold down a job but wonder at times if my employer is getting their money’s worth. I maintain by taking pain meds on a regular basis.
The fatigue is incapacitating. I can be ok one minute then need to lay down RIGHT NOW. When that happens I’ve learned I just need to go lay down. If I fight it I get very irritable and don’t do things right, so there’s no sense even trying.
Every thing can make me tired …
My life have changed ,from very active I became staying in person ,with arthritis pain all over my body .
Thank GOD I DONT WORK for the moment ,because I don’t know how would I be able to deal with it .
I take every free moment to sleep and schedule naps regularly to try to prepare for that! I use breaks at work for sleeping and grab a granola bar or almonds on my walk back inside
I can definitley relate.... we NEED to do things around the house, grocery shop, etc. But 'then' the fatigue HITS...OMG, I need to lay down right this minute. My husband and I went to a concert a couple of weeks ago, and just walking (a 'long' walk) and climbing the stairs...I thought, "I wish" we hadn't come !!!!!! It was all I could do to get to where we were to sit...btw, the concert was great, seems like going back to the car wasn't as bad, for some reason. Like many said, to pace ourselves, but sometimes even that doesn't seem to help. I too was a very active person, but now I can only do the 'basics'. It's sad that we all 'used' to have lives, but now seem to just 'exist'....but look on the bright side, we get to rest a lot!!!! Have a great day, and smile at the life we do have.
Yes it can hit me and I have to sit or lay down NOW! Out of gas completely. I get almost too weak to talk or get myself home, so I have to leave the store or friend's house quickly or I'll be too sick to get myself home. It's disabling for me. I can't go out for very long due to this issue. Later they found I have P.O.T.S. Postural Orthostatic Tachycardia Syndrome, but I had this issue since before my lupus diagnosis and before the heart problem..
This is my biggest frustration. Because I can't plan anything, Friends stop calling. Very isolating and I was super dependable, but not anymore. I will get up and get groomed and get tot the store and become too sick to go in so I have to go home.
CountryRose said:
Yes I know what you mean . I have had lupus for over 25 years I am now 70 . Can,t plan anything anymore ... good thing I am retired now. There are days when I go shopping get in to the store and wish I had stayed home. I can rest sleep rest and still be tired and have lots of pain .... it sure is not fun anymore.
When a flare starts, I get hit with fatigue in a major way. It lasts for at least a month, and it's brutal. Sometimes it's even hard to breathe, like it takes so much effort to breathe. I know how you feel.
I can so relate... I have gained so much weight since September from prednisone and am still so tired its all I can do to get through the day at work, and I want to exercise but just do not have the energy. I am hitting the bed not long after I get home, and crashing most of the weekend. I get depressed and moody from being so tired, it is just frustrating! I know how you feel totally.
I read an article helpful for lupus pts that explains fatigue in easy way .if you Google SPOON THEORY. Hope it helps you understand why we are tierd all the time.
Oh wow, I can very much relate to this. I have been unemployed for awhile (about 9 months) and several people have recommended to me that I file for disability but I just haven't. Anyway, I am now at the point where I absolutely MUST get back to work and I am so scared because of this very thing.
Over the past 6 months, between the illness and the stress, I have days when I feel like I hit a brick wall and I'm out for DAYS! I would say that once a month or so, I wipe out for about 3 straight days and basically just sleep. I really can't seem to do anything about it. I manage to get up and do a few things but just can't seem to function past a shower and brushing my teeth.
My rheumatologist doesn't seem to hear my concerns over this or a host of other things so I am looking for a new one.
It's so frustrating! Some days I'll be okay and other days the fatigue is so bad that if I'm doing laundry for instance I can fold on or two shirts then stop and have to rest, then fold one or two things and have to rest....I just feel so unproductive
There is a pacing exercise you can try where you record the activity, the time you started, the time you started to feel tired or had any pain, and then the time you finished. You use a rating system for pain/fatigue so that if it changes by one or two points then you change the activity or rest. Your also suppose to alternate up-time activities with down-time activities so if you are doing the dishes you should then rest afterward by watching TV or something relaxing.
For example:
Activity: Laundry
Start time: 11 AM
Fatigue on scale of 1 to 5: 2
Started to feel more fatigued at: 11:10 AM
End time: 11: 30 AM
I guess the whole idea is that it makes you aware of what you are doing and for how long because most of the time it is hard to measure. I tried it a couple times, it does help, the only thing is the up-time activity vs. the down-time activity can be confusing. For instance when you drive you are sitting down but it takes concentration and I'm fine to drive but it depends on how far.
I’m exhausted most of the time. My sister who also has lupus says I should file for disability. Only problem with that is… Disability won’t pat for even half of my bills. Other than my mom working at a fast food restaurant, I am the only income. I have 4 children all except 1 lives with me. The one that doesn’t has a toddler that I do take care of. My second daughter has a toddler and an infant. All of who live with me. She has a part-time job that helps with diapers and wipes. But not much as far as food and necessities. My son works for his spending money but does not contribute to the household. The father of my children has never been seen after my youngest daughter was born . Now 15. The father of my second daughter’s children is in Alaska. He pretty much took off. My husband is in between jobs and has been for a while. Not completely his fault but not helpful. And my mother-in-law has also moved in with us. Her last stop from the nursing home. I also have 5 stepchildren who come to visit. All this under my 4 bedroom home and only me to support it all. If I miss a day of work we end up either missing a meal or becoming past due on a bill. It takes everything I can to get out of bed in the mornings and go to work. There’s not much help as far as cleaning up and after a exhausting day at work is bad enough. Then I walk into to a tornado hit house and crying or complaining kids. When I finally break down and can’t take it any longer and start fussing I’m told to calm down. They don’t understand. And the way things are going I will be working up to the day I’m put in the grave. Check to check robbing Peter to pay paul. Sorry I got started and couldn’t stop. As far as your post. I would be happy if I went even one day without exhaustion
Fatigue and pain can hit me in an instant. Even if just a moment before I felt okay. I don't even have had to have been trying to be busy taking advantage of a "strong" time. It can just come on unbidden. This disease is very frustrating and the people around just don't seem to get what your going through. I can't really blame them though, because on the outside we can look just fine while on the inside we are on a "melt down". So in answer to your question Yes the fatigue/pain hits like a ton of bricks a few times a month for me. Please, everyone take care of yourselves and be well.
Thanks for all the replies. Yes, I agree with having to plan everything out ...and still getting wiped. Like many of you, I've had to cancel plans a lot. Just the work week alone wipes me out. Weekends are for catching up on rest! And when I'm active on the weekend, I crash from that too. I guess I'm lucky to get the rest I can when I'm able too!
Tarra,
I'm not sure how you are doing it all but it is time for you to start taking care of YOU. You find the strength to keep going for everyone else but eventually, you will be so worn down, you won't be able to do it anymore. Take that from someone that knows all to well. It's not an easy thing to start saying No, and start saying Yes to what you need but remember, you won't be much good to anyone else when you have exhausted yourself past repair. I think that is part of why I have started to "started to hit walls", and I'm out of it for days. I've learned to say NO a lot more often than I once did but there was a time when I was the one that did it all. Now, I'm too tired to even feel that guilty for saying it.
Tarra said:
I'm exhausted most of the time. My sister who also has lupus says I should file for disability. Only problem with that is.... Disability won't pat for even half of my bills. Other than my mom working at a fast food restaurant, I am the only income. I have 4 children all except 1 lives with me. The one that doesn't has a toddler that I do take care of. My second daughter has a toddler and an infant. All of who live with me. She has a part-time job that helps with diapers and wipes. But not much as far as food and necessities. My son works for his spending money but does not contribute to the household. The father of my children has never been seen after my youngest daughter was born . Now 15. The father of my second daughter's children is in Alaska. He pretty much took off. My husband is in between jobs and has been for a while. Not completely his fault but not helpful. And my mother-in-law has also moved in with us. Her last stop from the nursing home. I also have 5 stepchildren who come to visit. All this under my 4 bedroom home and only me to support it all. If I miss a day of work we end up either missing a meal or becoming past due on a bill. It takes everything I can to get out of bed in the mornings and go to work. There's not much help as far as cleaning up and after a exhausting day at work is bad enough. Then I walk into to a tornado hit house and crying or complaining kids. When I finally break down and can't take it any longer and start fussing I'm told to calm down. They don't understand. And the way things are going I will be working up to the day I'm put in the grave. Check to check robbing Peter to pay paul. Sorry I got started and couldn't stop. As far as your post. I would be happy if I went even one day without exhaustion