I am sure this has been discussed to death but I am so frustrated! The fatigue is back and my quality of life is back down to zero. I feel like a zombie, even my personality is sapped. I can fall asleep anywhere - today fell asleep in my doc’s waiting room. I feel like I am walking and thinking thru jello!! I hate being tired more than being in pain, at least pain is more manageable. I forget things, sent a check without signing it and I can’t make decisions for the simplest things. Can anyone relate?? Before when I felt like this it was anemia and I got iron infusions I am actually hoping that is what it is bc then At least there is a solution. Does anyone have advice for this?? .
Hi. Yes I can totally relate. This sounds exactly like me during my last flare. Super frustrating, I know! What I found helpful were power naps (20 - 40 min) and eating as close to an all-natural diet as I could (which was tough because I didn’t have much of an appetite and I had to change some bad habits which isn’t easy when you’re already tired and frustrated).
When I’m flare-free I make sure I get a lot of exercise in, which seems to make the next bout of fatigue/exhaustion less severe.
Sleep, natural food and exercise. The miracle 3 Just always easier said than done…
Best of luck to you and I hope you are feeling better soon.
I can relate and just think this is negative side of lupus and other diseases. Hopefully your pain level will not get worse. Mine did as i aged and the combination of both can be overwhelming at times. But i agree totally with Kelli about how to help is the three things she says, eat healthy, exercise and get as much sleep as you can and during flares, i say try to take naps during the day or just rest more too.
One thing i will add, is i hope people are aware of how dangerous it is to drive while being fatigued. It is very dangerous and one of the leading causes of accidents. I had close call, if other cars had been around..well thankfully none were.
Just something to be aware of as foolishly risked not just my life but others to go to doctor appt over hour away...and local woman talks how she did hit another car here in town so not driving fast and put all 3, her and 2 passengers in other vehicle in the hospital. All in serious conditions. Just because she was exhausted and not thinking, plus reflexes are much slower.
Anyways...i do hope that you are feeling better soon. I try to get a really good book that will take my mind off how i feel and figure it is extra time to read...and yes i have fallen asleep in the waiting rooms before lol!! Best to you!!
I am going through the same thing right now! No one really understand it’s more get a good night sleep or I being lazy. When I was working I would ask my PCP for a steroid shot because they always worked as a quick fix. I stop asking when my buttock check started changing colors and looked like had a bad scar. No one told me that this was a side effect. It would last for about a week. Since I am not working I just deal with it until it passed. It’s going on one month feeling this way. It’s weird because for the first time my ANA is negative. I was feeling this way before during and now after the test. Exercise is hard but I have my fiancé take me out to walk in the store or park just so I am moving. After that I am out for the day. You have to find what works for you,ask the doc what he would suggest. I also cut sugar out of my die.
I have rhis all the time. One med that has helped with the brain fog is provigil. It’s a medication used to treat narcolepsy. My doc prescribes it off label as we were worried I would fall asleep at the wheel. I live out in the country and it’s a 20 minute drive to the grocery store. I still get tired and achy but I’m in no danger of falling asleep. It helps that I can’t sleep when it’s light outside. As the orhers said rest, exercise and eat better. I have no appetite so the last one is tough for me but I snack on carrots, snap peas, fruit, whatever I don’t have to prepare. I hope this eases for you soon. I’m at the point where I don’t think mine will ever get better. But I continue to hope. Gentle hugs, Annemarie
I can totally relate. I have had so much fatigue, that I finally asked my Rheumy if it is going to last forever and if it will continue to come and go, outside of flares. She said that many people with Lupus complain of fatigue and pain, outside of a what is a documented flare. I just feel like I have molasses running through my veins. My workplace has insinuated that this part of my disease has caused me to make some mistakes or have some lapses in my judgement that placed others in danger. This lead to my being demoted and having to talk with an EEO counselor. We still haven't come up with accomodations that will work for me, but my rheumy did a family medical leave request for me to be able to take leave intermittently. I am afraid to use it though, so I just work, feeling like a slug. My rhuemy does bloodwork about every six months for me, to make sure that thyroid, or vitamin deficiencies aren't adding to my fatigue problems. Hang in there! Hope you're feeling better soon!
I have been struggling with fatigue also. With three kiddos its hard to be able to rest during the day. My blood work is okay but someday I can’t wait until bed time! I am just starting a supplement called Ribose. It is allegedly supposed to be helpful battling fatigue. I am not holding my breath but I thought I would try. What do I have to loose? Sorry you are struggling! Hang in there and know you aren’t alone!
Ann, I’m very interested in learning more about this. Is there a specific website that you found this information on? It’s ok if it’s written in research format or in medical journals, had to write that way for my psych degree : ). I hope you are having a good day, you deserve it! Gentle hugs, Annemarie
Ann A. said:
I can explain some of the fatigue. In each cell of the body there are structures -mitochondria - that function like energy sources partially by making ATP. In people with lupus the mitochondria do not function properly and we therefore we do not have enough ATP. The fatigue is at the cellular level.
Our bodies can also have a difficult time getting rid of cells that have died.
These are two of the reasons that exercise can sometimes make us feel better. It can help get the dead cells moving and it can help the mitochondria be a little more functional.
How exercise works - my favorite reference is now Robert Lustig's new book Fat Chance. He does not talk about lupus specifically but he does talk about the role of exercises in apoptosis and mitochondrial efficiency.
We get an infection or an inflammation (like a really bad sunburn). Cells die but they do not get completely cleared out of our bodies by our immune system and the dead cells are both foreign and self - and autoimmunity is born.
You are not alone. I too am going through a period of extreme fatique. Sometimes I wake up at a normal time in the morning and just lay in bed for a couple of hours to pull myself together. Then I get up and get ready for the day and I'm exhausted. I feel lazy and feel others must think I am too. I run my own small business (antiques) and I just don't know how much longer I can keep doing it. It is so frustrating! Hang in there!! That is all any of us can do.
Fatigue cost me my Drivers Licence and my CDL Licence. I had to retire on Disibility. My life revolves around good day and bad day.. Lupus fog and sleep days. Pain is just part of the deal, more or less. My husband and friends know that I will do what I have promised if I can. Don't be offended If I am over and out.
I feel exactly the same way. I sleep all day. All the time. I'm no longer allowed to drive. I forget everything, all the time. My wife has to pay all the bills because I forget and I get confused. I put the pretzels away in the refrigerator the other day. I had to quit school and work. I've been very ill since October and have just finally been diagnosed with lupus and Hashimoto's thyroiditis. I also have Major Depressive Disorder and Anxiety Disorder and severe iron deficiency anemia. I also had weekly IV iron treatments. When I first became ill I was on bed rest for 4 months. I can't make decisions about anything. My wife has taken over everything. I am so confused and sluggish. I also feel like a zombie. I understand exactly how you feel. I was just diagnosed so I don't even have my treatment plan. I see my doctor again on the 8th and I'm hoping for a better plan to help my fatigue. It is so debilitating.
It must be an added stumbling block for you to be dealing with a chronic illness that mostly affects women. I think you are very brave to reach out in this forum. I too have had depression and the chronic illness anemia, one transfusion and a 4 week course of Iv iron, cannot take the iron pills. It really does help to reach out and get some validation that you are not the only one fighting this disease. I know I am really glad you spoke up on here!! Will be thinking of you. The beginning is hard, a lot for you and your wife to take in. Good luck to you and stay strong!!
Thanks for your reply, jammingirl. I am also a woman. ;) I'm a woman who is married to a woman. We also have a young son. I have always been the "homemaker" or the one who does most of the housework. My wife has had to pick up most of the housework in addition to being the only wage earner.
jammingirl said:
Dear AGM,
It must be an added stumbling block for you to be dealing with a chronic illness that mostly affects women. I think you are very brave to reach out in this forum. I too have had depression and the chronic illness anemia, one transfusion and a 4 week course of Iv iron, cannot take the iron pills. It really does help to reach out and get some validation that you are not the only one fighting this disease. I know I am really glad you spoke up on here!! Will be thinking of you. The beginning is hard,, a lot for you and your wife to take in. Good luck to you and stay strong!!
OMg so so embarrassed! I am a total jerk, please accept apologies! I have 2 sons (one is 19 first yr of college and the other 15)
. It is so hard, particularly with children to make a go of it on one income. Almost all my friends have 2 jobs to a couple. Despite me being a jerk and making dumb assumptions I really do wish you well and am willing to chat anytime! i was diagnosed quite early (18) so at 44 I have been in this rodeo for some time!! If you ever need someone to chat with I am here! I am the homemaker,too - I have a super tiny bus. in which I make and sell homemade jam but that has been on hiatus due to my business. Good luck to you both! You will be in my thoughts!!
No apologies needed. It was an honest mistake. I appreciate your offer to chat. I may rely on that sometime.
It is difficult right now. We went from 2 full time incomes to my wife getting a promotion and I quit my full time job and started working part time and going to school full time. Now I'm home and every single day is a struggle. I can't do much. She is so understanding and willing to take over things without complaint but it causes me immense guilt. I'm also not being the mom I want to be right now. I missed a concert our son was in and I missed the last parent teacher conference. Thankfully my wife was able to attend so he had a parent there but we have always both been there for everything. It's hard. I appreciate your time and the opportunity to chat.
jammingirl said:
Dear AGM,
OMg so so embarrassed! I am a total jerk, please accept apologies! I have 2 sons (one is 19 first yr of college and the other 15) . It is so hard, particularly with children to make a go of it on one income. Almost all my friends have 2 jobs to a couple. Despite me being a jerk and making dumb assumptions I really do wish you well and am willing to chat anytime! i was diagnosed quite early (18) so at 44 I have been in this rodeo for some time!! If you ever need someone to chat with I am here! I am the homemaker,too - I have a super tiny bus. in which I make and sell homemade jam but that has been on hiatus due to my business. Good luck to you both! You will be in my thoughts!!
Thanks for this great advice, its just what I needed to hear right now. Its really difficult to get my head around the fact that I'm fatigued, but I need to get more exercise right now, I know its true, but my lupus fog doesn't want to believe it. I don't have an appetite right now, and it is a difficult thing. I would think I'd be losing weight, but not so. Thanks so much for your advice.
Kelli said:
Hi. Yes I can totally relate. This sounds exactly like me during my last flare. Super frustrating, I know! What I found helpful were power naps (20 - 40 min) and eating as close to an all-natural diet as I could (which was tough because I didn't have much of an appetite and I had to change some bad habits which isn't easy when you're already tired and frustrated).
When I'm flare-free I make sure I get a lot of exercise in, which seems to make the next bout of fatigue/exhaustion less severe.
Sleep, natural food and exercise. The miracle 3 :) Just always easier said than done...
Best of luck to you and I hope you are feeling better soon.
Just always easier said than done…