Normally I’m not a fall risk. But for the past few months, it’s gotten pretty bad. I’m on high doses of steroids. (80mg im twice a day) And I use a walker when I need to. I recently spent a week in the hospital and didn’t fall once. Now, since I’ve been home, I’ve fallen 3 times. I can’t get off the toilet alone. I can’t get up sometimes. And then when I fall, I can’t get up. My muscles just don’t have the strength. It’s not painful. And I’m not losing my balance. I just literally lose strength in my arms and legs. Anyone else experience this? Is it the steroids, the disease, or just the muscle fatigue from being in the hospital for so long?
Its probably a combination of the 3 - For starters get a raised toilet seat- they are a godsend And you should be walking with a walker or cane all the time until you can build your strength up a bit. I know they are a nuisance but not as much as laying on the floor unable to get up.
Oh and see about getting some in home physical therapy - they are a big helptoo
Thats why I am laying here with brokenfoot. Becareful use assistance if u are undteady
Hi Jen,
Boy do I hear you.....in the past 2 months I have fallen 5 times...people ask me did your legs give out ...I really don't think so....but something happened. I never broke anything, but just tore my right shoulder radiator cup on one fall, on the next fall I fell on a rock and it went into my knee cap....
I threw away the shoes that I fell in thinking they had something to do with it...nope fell again...I am not on steroids, but when I was I took a high dose like yours and never fell once....well if any one sheds some light please email me too....I am going to my Rheumatologist soon so I will ask her too....in the mean time if you can try to do leg squats maybe 2 in the morning then 2 in the afternoon, then from there go up....that's how I kept my strength...
Sending lots of hugs your way,
Bernice
Wow Jen! That sucks! Last Winter I kept falling too! They (Drs) were all freaked out and kept testing for MS. Luckily, it wasn’t that, but we never got a clear answer. My take-away was that it was a combo of exhaustion/muscle weakness and possibly over-medication. I’ve worked on all these things since last year and don’t fall anymore. Hope this helps!
I agree, falling and not being able to get up must really suck. When I’m flared I get the muscle weakness in my knees ankles and wrists, but plaquenil has helped a lot with that. I don’t fall like that but I often feel like i am unbalanced so I knock into doorways and such. Not sure if you get dizzy before you fall?
I’m thinking it’s muscle weakness since I inject the medrol in my upper thighs and I do have some necrosis of my joints. I’m using the walker. It’s just hard with my 3 year old. Thank goodness her daycare is wonderful. I haven’t hurt myself… yet. But I’m worried about it. I do have some neuropathy and that might be contributing. Thanks guys. I don’t feel so alone. My mom seems to think my falling is my fault. She’s like, “stop!” As if I planned it. Oh, the elevated toilet seat, AMAZING.
Confession: I used the cover from my daughter’s toilet training chair. Lol. Minnie Mouse has been a great help. Plus it’s padded. 
I don't use steroids and I have the same problem. So probably the disease. I have to use a rollator walker.
Hi!, please don’t think that you are the only one Ha! Ha! For about 3-4mths straight I was falling while walking, standing, and not to say, in the bath tub standing or sitting ! My daughter had to help me take baths -like get in tub with me, she would cry at first but I broke down one day when it was time to take a shower one day !!! I started screaming at her for no reason (it really scared her bad), I broke the mirror , tried to cut her , I just wanted to be Normal and not helpless for myself , my son kicked the door open , they helped me get off the floor screaming and kicking -it was a VERY crazy moment!!! It screaed me more than her I think , well maybe not ? But I can relate with you! Wanting to be normal after Living with Lupus when you know it , is sooooooo hard to adjust to , until the you pull from deep down inside your self and take control back of your life , somewhat!!! Oh the end of that moment with my daughter and myself -finally got in the tub 3hours later , after I clammed down and took a power nap!! But from that day to present , she don’t get in the tub with me anymore , but I have to leave the door somewhat open just in case I do fall, but have not done that (fall down), in now almost 5-6mths…Beverly L.
Wow Beverly. That took a lot to share. Thank you. Because it’s just what I needed to hear. It’s crazy the many ways this disease and medications can affect us. Cognitively. Physically. Emotionally. Thank you for letting us all in on that chapter with your kids. That was brave.
Well the truth is the truth!! We all have some crazy moments with Lupus and we want to just be normal! I don’t like asking people for help , no matter what it is but am always the first to help someone! The perrsure of someone saying no make me just want to do things by myself!! It is not that I can’t handle rejections , but I Perffer to do things for myself. But I will if I have to!! Well hope that things work out for you , and that you have a pain free day…Beverly L.