Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
As I try and get a grip on what exactly is going on with me, Lupus flare or something else, I would randomly get these "normal" moments where I feel decent, not tired, and not sore. It is random, just one evening or afternoon. But Friday evening I was mowing the lawn and I was so woe, so tired. Barely could finish. Came in, showered and laid down. About an hour later, I started feeling better. Slept well that night and woke feelng good. Saturday was a "normal " day and I didn't waste it. Got things done, spent time with family. Then in what would be about 24 hours when it started, the aches came back...the fatigue.
Has anyone experienced this? It is hard. That glimmer just makes you realize what it can be. I went over everything in my mind in what I could have done to help. I mean I tried to duplicate the next day. Nothing...frustrated.
Has anyone experienced this? It is hard. That glimmer just makes you realize what it can be. I went over everything in my mind in what I could have done to help. I mean I tried to duplicate the next day. Nothing...frustrated.
Mary Ann
I am sorry that you feel like that and I do understand, because I was also very confused about all this before I was finally fully diagnosed with SLE/MCTD. These episodes of either feeling good or feeling terribly exhausted have no pattern at all and it is very difficult to come to terms with the fact that these unpredictable episodes are just a symptom of suffering from SLE/MCTD...
I remember very frustrating episodes, when I was getting ready to go out (careful dressing, decent make-up, nice hair etc) and all of a sudden I had to sit down and take a rest because I became suddenly very tired and exhausted, in fact I became too tired to out at all and this was extremely frustrating....
I finally found my way "around" these episodes by always taking a rest when I feel very exhausted. When I feel better, I try to do all the things I could not do whilst resting and I have to make absolutely sure not to "overdo" things, because that could backfire with another episode of exhaustion...,
That is my personal "pattern" of dealing with SLE/MCTD and it is very much "touch and go" and needs lots of patience and lots of learning about my body and SLE/MCTD.... Another point is for me to make sure not to eat anything that could cause me any flare-ups, like for example Brussel Sprouts etc.
I do hope you find your own way of dealing with this unpredictability and please feel free to come back to us ...
Best wishes from Kristina.