I have had severe muscle weakness as well. So sorry. I hope you find out soon. Are you with a good doc? I don't believe your Lupus is any more severe, I just believe it isn't controlled. When I got to the point I was immobile, I was put on steroids, then weaned off after my Plaquenil kicked in with my other lupus med. I am now controlled through lupus meds. Yes, some of our lupus are more severe than others, but that doesn't mean we are like cancer patients and Stage IV and near death. It just means we have to make sure we are staying on track of our medications, diet, exercise, and seeing our doctors. Paying attention to our bodies and our stress levels. Now, don't pay attention to what I do because I work way too much and stress myself out way too much, but pay attention to what I am writing. Your body has several red flags, like relationships. They will go off in plenty of time to warn you before it starts to sink. I can't tell you what they are because they are different for all of us. For me, pain in my elbows and wrists start. Then it goes to my hands. Then to my knees and ankles. My stomach. Then I am down for the count. I always get headaches but when my migraines start, I'm down for weeks at a time. My hair loss has reactivated, so I know I am in for steroids, again. I hate those. They are the worst of the worst. I just don't know how else I am going to get out of this flare. I have been in it for months. Find a really good rheumatology and maybe hematologist to go along with it. Wish you luck, my friend.

I do have muscle wasting/destruction and am scheduled for an EMG test with my Neurologist on May 2nd. So, hopefully, I can find out the reasons for my balance issues & muscle weakness with that test. I’ll let you know what I find out.

Very much so. I find my arms really get weak

GenlancoYankowski. I tried to join the group of polymyositis and dermatomyositis on Facebook but I have not been accepted yet because I don’t have an official diagnosis of polymyositis or dermatomyositis I think…I wrote that I was waiting for the diagnosis but I guess it’s not enough for them 😔.

HeidiBreakey. Yes, I also think my lupus is not well controlled since 7 months. I’m more often in a flare state than not on a flare. The treatment of Prednisone I receive now since almost 2 weeks is only helping a little bit. I still have light fever 🥵 in the evening and in the morning and the last time I had the malar rash on my cheeks and nose was last Thursday evening. I have stiffness of my hands in the morning and redness and heat on the palms of my hands and the soles of my feet in the evening + redness and heat on the distal inter phalanges of my fingers and toes almost constantly. At least, I don’t have any pain now since 4 days, the last time I took CBD oil was last Friday morning. The weakness of my thighs and upper arms is better since yesterday, I can now wash my hair without difficulty but I still use my cane when I leave home just to be sure. The internist told me she might add an immunosuppressive medication in one month in April after my treatment of Prednisone will be finished. I take Plaquenil now since 3 months. The picture is my face 4 days ago. I was feeling fire 🔥 on my cheeks that evening.