Hi, Do any of you sometimes feel just fine one minute and then bad the next? I will be having a decent day and all of a sudden something starts hurting or aching. Fatigue hits like a tidal wave. I know my hubby thinks I am trying to get out of doing things around the house, but I seriously have these back and forth bouts of symptoms.
I am on Acthar Gel injections. The first couple of days are usually good, with little or no pain. By the third day, I usually start hurting again and it is time for the next injection. I'm not sure if this is how it works either. I see doc next week, thank goodness.
Do you have fibromyalgia as well as lupus? If so, it could be the fibro, as it oftentimes hits me like that, like a bolt out of the blue. I don't know if lupus does as well but my non-medical guess would be yes. And yes, the fatigue does hit like a tidal wave; I guess it's the residue left over from our body trying to deal with the pain. That fatigue is scary though because some times you can barely keep your eyes open. The best way to fight both is to get sleep when you feel a lot of pain or fatigue.
When I got sick in 2012, I felt very bad. I have now been on Plaquinil for almost 3 years and I have no real symptoms of Lupus. My blood work shows NO inflammation. I did have a lot of pain in my hips for awhile and then I quit eating Gluten and after 3 months, my hips did not hurt anymore. I do not know if the Gluten made me hurt or if the Plaquinil just kicked in. All I can tell you is to hang in there and you should feel better after awhile.
I have had to pull my car over and take a nap because I couldn’t drive home, like 4 miles!!! I have Lupus, fibro, gastoparesis, Raynauds, Hypothyriod…which ever one does it I do not know, but let me tell you, it knocks me over!!!
When I have a good day (meaning feeling well), I don't think about fatigue, aches and pains--not good. At any point my body "shuts off." I can hardly move, every joint aches, my "everything" hurts and my teeth itch.
Anyway, this autoimmune stuff tends to do this. I wish I could be more cognizant of taking it easy on a good day. But, I'm usually having fun when I feel good and don't think about limitations.
I’ve not been diagnosed with lupus but told I do have one or more of four autoimmune diseases, lupus being one of those. These episodes of the feeling of fatigue coming on out of now where used to happen to me daily before I started plaquenil. Now the episodes are further apart and not as severe thankfully. I hope you find some relief soon.
Jen
Do you have fibromyalgia as well as lupus? If so, it could be the fibro, as it oftentimes hits me like that, like a bolt out of the blue. I don't know if lupus does as well but my non-medical guess would be yes. And yes, the fatigue does hit like a tidal wave; I guess it's the residue left over from our body trying to deal with the pain. That fatigue is scary though because some times you can barely keep your eyes open. The best way to fight both is to get sleep when you feel a lot of pain or fatigue.
I go through the same thing. I'll feel up in the day to go out to dinner and once I take the shower, down I go. My plans are always changing because of how I feel. It sucks because people can't rely on me and I feel bad canceling but I have no choice. The ones that are there for you and completely accept your illness by understanding plans can change, those are the ones to have in your life.
Yes! I get the exact same thing! Thank you for posting this it feels good to know I am not alone…I work at starbucks and obviously it takes a lot of fast multitasking and fast thinking. I’ll feel just fine for a while I can run the whole kiosk by myself with a line out the door and still do other chores such as wash dishes, brew coffee, make drinks, etc. And then all of a sudden it’s like time slows down and the fatigue kicks in. I start moving like a turtle but I can’t help it feels like gravity is pulling me down and the pain is like a bus just hit me.