How do you manage your lupus fatigue?

Yes, but for me that usually happens in the beginning of a lupus flare. Or if my stress level is at a very high rate. Unfortunately i have found that my doctor can't help with fatigue. But rest when you can take a short nap if possible. Find where your limits are and relax at your limits. On your good days exercise on your bad days rest as much as possible. Unfortunately lupus symptoms don't always come at once. For the first two years of my diagnosis my lupus was inactive except blood work issues. Then the 3 year every thing changed my lupus struck with a vengeance. Just take it one day at a time.

@lupus38‍ , @Susie41$‍ said it well. The only thing I can add is that I also have MS, and in GA I was prescribed Ritalin, however I hated the side effects although it helped when I really needed to be somewhere. Like at my sons wedding. Cannot cancel out on an such an occasion. I’ve also been taking very high dose biotin as my ms treatment and it helps with energy. Avoiding ultra violet rays at all costs helps too. Good luck and feel free to either friend or message me. 

What does the fatigue feel like to u? Sometimes i feel so drugged i can't hold my eyes open. My arms and legs will give out sometimes my neck too. I will sleep all day after sleeping all night. Is it that severe for anyone else?

Hi @Shedevil68‍ 

i totally understand the level of fatigue you describe as I have experienced the same level of fatigue, particularly when I’ve exposed myself to the sun (at all ... I pretty much stay indoors all summer as that is the worst time of year for ultraviolet rays) or even too much indoor ultraviolet light exposure. Any strenuous activity also can bring about that level of fatigue as can a bout of insomnia (for instance I have MS and had a bad batch of baclofen and my muscle spacticity was waking me during the night so it resulted in days of constant fatigue, and yes I have Lupus and Vasculitis also).  

In the case of the level of fatigue that required basically non stop sleep I never even tried Ritalin I just slept and got up to eat. It’s very difficult if you live alone which I do. Thankfully there are some support services such as grocery delivery etc. 

I’m sorry for the delay in answering your question. I have not checked the website in a few days ... I wish you the best. 

Hello, 

My name is Frances and I am new to this group. I was diagnosed with Lupus in 2013 my doctor put me on medication and it helped. I was only on medication for about 18 months then I was taken off all medication. However, recently my blood pressure started going up to the point that I had to go to urgent care for chest pain and a B/P of 212/111. I feel tired and exhausted. Has anyone experienced hypertension post diagnosis? the doctors seem to think that this may be related to my lupus and not true HTN. Can anyone give me any feedback regarding this matter??

Thank you,

Frances

@fstringfellow‍ Hi Frances,

i have experienced blood pressure spikes like that and one cardiologist thought what I described was a heart attack at one point early on .. this is after a lifetime of very very low blood pressure. I have Vasculitis which often goes along with lupus. Have you ever had finger or toe ulcers? That’s an easy way to get a definitive diagnosis via a skin biopsy. A whole host of different symptoms can go along with Vasculitis and make your head spin.  My feet are often purple from spasms and chronic sinusitis as well as eye inflammation. Good luck and stay in touch.  

Yes I have fatigue. I had to learn to pace myself when doing housework or running errands. And taking naps very important 

Hi Frances!

Yes, I had low BP then boom...my BP went up and has stayed up since. I'm on 3 meds for it and still have problems. No Dr can tell me why this happened so suddenly. No Dr can regulate my BP. I feel your frustration. All i can do is take my medicine and keep learning as much as I can.

Keep the faith! Much love!

Hi,

I am new to this. I definitely experience fatigue. Fatigue to the point where I feel nauseas and my entire body feels heavy. I have also recently been having severe headeaches and I am constantly dizzy and having eye sight changes? Does anyone else experience neurological manifestations of lupus? It’s awful! I have 4 kids and when this occurs it’s so hard to function. I also feel like no one understands. They say they do, but they don’t. 

thank you all for the enormous input. @Shedevil68 the fatigue to me just seems like I am hit with a bus... like I could just fall asleep at any given time and even if I do not have the ability to fall asleep (because my mind is wandering), I can hardly keep my eyes open once I try to start doing something.

@fstringfellow what medication were you on for fatigue?

@LynndMS‍ I may look into taking Ritalin or some sort of medication like that. Kind of worried how I would feel though as you stated.

I have, since the posting, tried putting myself on a sleep schedule, which has made some minor improvements. I also have tried Kratom - for the pain really - but through low dosages, I do get a burst of energy.