How do you manage your lupus fatigue?

Hi @Ochoar‍ I’m not sure if you’re female but I went through menopause very very young ... I was having drenching sweats. I’ve been on hormones which have helped but I’m having them again. I started at 43 ... the doctors kept acting like it was all in my head. I was sent to an endocrinologist who did blood work and I was off the charts in the menopausal hormone levels. I read autoimmune diseases can cause early menopause ... 

thanks yes I’m a female , I’m only 35 yrs old. Is that to early for menopause?  I asked my rhemathologist he said it might be from inflammation but was not sure. I should be more firm and request more test

Hello Ochoar and LynndMS,

I am new to the site. I joined the site as I feel no one understand what I am going through with my Lupus diagnosis and would like to communicate with others who can share and understand what I am going through on a daily basis.

I have night sweats several times a week. My doctor is a combination of menopause and Lupus related....whichever one it is night sweats are horrible. I am in my late 40’s and not sure I should be experiencing menopause yet. Also, I have been to soooo many doctors that would love me to believe that all the pain and symptoms I experience are in my head. I thank God for my primary care doctor who has helped me deal with my Lupus diagnosis. He treats with respect and dignity. He has NEVER made me feel like it was all in my head even if that is what he felt. I agree we have to be firm with the doctors and demand additional testing when we experience new symptoms.

I dealt with the night sweats (and other bad female hormonal symptoms) for several years before I finally got relief. They’re back (night sweats) and I don’t know if it’s menopause symptoms worsening or Lupus symptoms ... I do have other inflammatory signs (rash on hands and a couple hugely swollen joints) ... so far this winter I’m either freezing or sweating and two of my sisters only had the “cold all the time” type of symptoms ...  I have a neighbor up the street (and others in the past) tell me I have to force myself to do this or that .. like be in the sun or heat (I have MS too) that’s a pet peeve. Also Ochoar, sometimes certain tests don’t show (like autoimmune disease testing) things.  The hormonal testing will show the truth (I think) and I once asked my rheumatologist why and he said antibodies will hide and it’s the nature of rheumatic diseases.  I’ve just been tested to death because of worsening symptoms and it showed some things off but rheumatoid factor equal to high normal (whatever normal is) so no explanation and they want to do more but I’m tired of it ...because I have Lupus, MS and Vasculitis they don’t know how to try and treat symptoms. I know MS doesn’t cause joint and rash symptoms ... pretty sure Vasculitis doesn’t either. Anyway sorry to go on ... and Welcome new beginnings40 ...   

Hello.. I have recently been diagnosed with lupus. Every day I feel like I have the flu and really fatigued. Been more often than not. However just a few days ago I started to feel like I literally got my butt kicked. All the way down my sides under my armpits to my knees feels like one huge bruise on both sides. Has this ever happened to anyone else? I did some research and it doesn’t seem to be a common thing. Thanks!

@LynndMS Hey y'all I was diagnosed with Lupus in the early 90's.  Said it was in the lining of my heart and lungs.  I have had 2 confirmed strokes, heart valve corrective surgery, and I have a leaky aorta that will require surgery and medication will not fix it along with the heart murmur.  The strange thing is I knew each time I have had a stroke.  My symptoms were a horrific headache.  I mean it would wake me up!   It was a migraine that was magnified by 1000 times and sometimes I could have it all day and then at other times I would come on quick.  Then my head would start burning like it was on fire and then I would feel a pop in my head and then I would go unconscious and would go into a seizure and stroke. I was actually sleeping during one of my strokes and it woke me up and for some reason I started running for the air conditioning unit controler to make it cooler in the house not really realizing it was actually in my head that all this was going on. I fell in the hallway and wasn't able to stand up.  I remember having this incredible feeling of uphoria.  It was actually quite nice lol. I managed to get into my sons room by crawling on the floor and climbing onto his bed.  He had heard me making all kinds of racket and kept asking me what was going on. He was wounded in Iraq and is at this time a parapalegic.  My husband and I were helping him during this time as he wasn't able to get out of bed.  I asked him to call 911 and my husband as I told him what happened and that I thought I was having a stroke and didn't know how much longer I was going to be cohearent.  I was able to tell the paramedics as they were literally just down the street but it still is really weird.  I have never met anyone that has had the same experience with strokes so this will be interesting to see what I learn.  I hope someone else out there has had the experience of remembering. having a stroke and knowing it.

Is it related to my Lupus, I believe so but I also have heart problems on my father's side of the family but we also believe my Lupus came from his side of the family, his mom we think.

I hope I have been able to answer some of your questions and maybe give some good advice.

This is going to sound lame but I personally think we need to stick together and would love to have each of you as friends so that at if at any time we need to talk or vent, we can be there for each other and the more people we have as friends, from all over the more opportunity we have to help and heal and learn different methods of treatment.

God bless each of you and I hope we can provide the much needed sisterhood that each of us deserves. 🙏🤗

Hey again, as I was reading these comments on night sweats, yes they go hand in hand with Lupus.  I have had them on and off again. In a flare, night sweats. When I was 36 I went to my Dr as I thought I might be in the premenapasal stag.  Hech no full blown menapause.  I had already had an endometrial oblasion as the insurance company said I was to young for a hysterectomy even though my Dr wanted and said it was medically necessary, it was a no from the insurance company.  After reading all these posts it seems like we have a common denominator that I had never realized before and that is the menapause issue.  I find that very interesting. 

Have a blessed evening everyone 🤗🙏

Thank you everyone for so many responses and advice. It also helps me to know that I am not alone in feeling exhausted and overwhelmed.

@LynndMS‍ and @naturalremedygurl‍ I lately have begun to experience an increase in sweating when I am sleeping... there are times where I wake up and I can feel the sheets being clearly wet from sweat... but the room is not hot and none of my family living in the same house sweat. So I am wondering if this increase in sweating is because of lupus.

There are times where I wake up to go to the restroom and put another sheet / towel over the actual sheet on the bed because of the sweat. I feel maybe this is also attributing to my fatigue? Any thoughts on this?

Hi everyone. I wanted to also let everyone be aware of another discussion where members are sharing tips for sleep with MS that you may be interested in!