I'm somewhat new to SLE and have always had your typical Lupus symptoms but within the last couple weeks on top of having terrible flares, and being debilitated in bed (waxing and waning) I have noticed EXTREME fatigue, I can't even lift my toothbrush to my mouth to brush my teeth!! Or reaching to grab a can of soup in the pantry is severely overwhelming.
Also, on days I can get out of bed, just walking from my parking spot into the grocery store makes me want to drop dead. Does anyone else have debilitating fatigue like I'm currently experiencing? How did you explain this fatigue to your rheumy and family/friends/coworkers? It's like trying to run in cement!!
Underlying Conditions: Raynauds Phenomenon, Urticaria, Costochondritis, Protein C Deficiency & Factor 5 Leiden Mutation (Blood Clotting Disorder)
Yes in fact that feeling was one of my first symptoms before I knew I had SLE. I explain it like my whole body feels like it turned into a wet sandbag and even lifting my arm is hard. That symptoms always improves when I am on prednisone along with all the other symptoms but I still have it to some extent daily. The muscle and joint aches, the mouth sores, itchy scalp and hair loss all came after that extreme exhaustion. At first I used weakness but that is not accurate because I am not weak I just feel weak. I think it is a part of SLE and for me one of the hardest things to push through. I can push through pain but my husband and I have had to leave stores so often because I could not stand any longer. Sometimes it gets so bad it is even hard to sit up. Sleep usually helps a little. I go bed and sleep 3 to 4 hours and will wake up feeling a little better but most often have to up my prednisone. I am on 2 mg a day now and have not been able to get off for months or I go right back to that slug in the cement. My Rheumy said as long as I can stay at 2mg he is not worried and I also take plaquinel. If I have to go up to 5mg he wants to put me on Imuran. I am doing ok at 2 mg for the most part.
Again I do believe many people with SLE have this symptom unfortunately.
The one thing that SLE has caused for me is a struggle each day of is it possible to shower today or not. Before the fatigue I used to shower everyday without thought. Now I forget what that felt like.
Thanks so much for your response, sometimes it helps to know others are experiencing the same thing and its not just in my head!!! Your response has been so helpful, thank you and best of luck to you!!
I know my husband and neighbors think I am crazy. I woke up 3:00 am and started to clean my shower. I have been planning to get to it for weeks. I sometimes though rarely get a burst of energy and have to take advantage when I can. I am soaking it with scrubbing bubbles and will take me all day to get it done. Let it sit and clean it out later, spray again later let it set clean out and repeat. I just had to share because the timing is always crazy. It always seems my little burst of energy comes at the strangest hours.
Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
Fatigue is one of the central symptoms in lupus and other autoimmune diseases. Some patients (and doctors) believe that Plaquenil (hydroxychloroquine) helps combat fatigue, but does not completely eradicate fatigue.
It is important to listen to your body and rest when necessary.
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I also have a lot of fatigue. When the Lupus is real active you will be very fatigued because your immune system is fighting so hard. Like when you have the flu your very tired, this is why!
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So as I have predicted my brother his wife and children have dropped out of my wedding
Advice needed re what private blood tests I should opt for to try to prove to GP that my symptoms are probably lupus & need investigating?
HYDROXYCHLOROQUINE
Utter Despair!
