puppylove Posted December 29, 2011 Report Share Posted December 29, 2011 Sometimes all of the sudden when I'm standing I will get this weird feeling like my whole body goes weak. I feel like I could fall over, but I'm not dizzy. It usually only lasts a second, but it happens over and over. It usually happens at night, but it has been happening all day today. Has anyone experienced this, or know what it could be? Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 29, 2011 Report Share Posted December 29, 2011 I get that feeling but it doesn't go away until I lay down and rest for a long time (at least a cuple of hours). It's why I had to stop working. I would often not feel dizzy with my pre-syncopal episodes but I would feel this overwhelming weakness and fatigue just before I would faint. If I lay down I can stop the fainting. I do get dizzy with it sometimes but the weakness and fatigue is a very clear and separate feeling from dizziness. For me, it is definitely part of a pre-syncopal episode. Quote Link to comment Share on other sites More sharing options...
gertie Posted December 29, 2011 Report Share Posted December 29, 2011 Hi puppylove, When I get that feeling I feel like my knees turn to jelly. I've done that when in a crowd &thought it was a reaction from perfume. I've also done it when at home alone. I haven't figured out whatcauses it, but think it must be a drop in BP or heartbeat is irregular. I'm always afraid I'm going to faint orhave a seizure. As many times as I have passed out in my life it still terrifies me. I think it's because I'm notin control. Hope you figure it out. Quote Link to comment Share on other sites More sharing options...
puppylove Posted December 30, 2011 Author Report Share Posted December 30, 2011 Yeah, the jelly leg feeling is a good way to describe it- but all over not just my legs. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted December 30, 2011 Report Share Posted December 30, 2011 I get the weakness all over and I will feel so weak that it feels like I can barely hold my body up at all. I can't walk, hold my arms up, and sometimes I can hardly even hold my head up. It is a part of the POTS but I don't have any advice on how to help it because I can lay down and rest for a few hours and still feel the same. It is extremly hard to do anything when these weakness stuff happens. Quote Link to comment Share on other sites More sharing options...
lieze Posted December 31, 2011 Report Share Posted December 31, 2011 I think weakness is one of my biggest barriers. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 31, 2011 Report Share Posted December 31, 2011 I also call them 'jelly legs' and it feels like I'm trying to walk through water sometimes. Has anyone else ever just collapsed and fallen to the floor? Quote Link to comment Share on other sites More sharing options...
gertie Posted December 31, 2011 Report Share Posted December 31, 2011 Sometimes I describe it as feeling like I'm trying to move in drying concrete. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 1, 2012 Report Share Posted January 1, 2012 potsgirl,I haven's actually collapsed because it feels like I'm going to collapse and it is always so frightening to me, so I have always sat or lied down before I found out what would happen. But I do believe I would fall down if I didn't sit or lay down quickly enough. It almost feels like I'm going to "pass out" without a loss of consciousness. I did actually experience this sensation driving my car once and had to pull over into a parking lot. I knew I was in trouble and called my mom to come get me. By th etime she got there 10 mins later, I could not grip the steering wheel or walk on my own because my muscles were so weakened. I had been perfectly fine 1/2 hour before the onset of the episode. Quote Link to comment Share on other sites More sharing options...
issie Posted January 1, 2012 Report Share Posted January 1, 2012 Yes, have this too. Sometimes, I can't pick my legs up - like to get into a car. It's so frustrating. I have fallen with this too. Don't know what it is and it totally wipes me out. Then I start getting tremors with it.Issie Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 1, 2012 Report Share Posted January 1, 2012 I don't get weak legs exactly, but I can get that light-headed weak feeling that makes me pull my car over until it passes. I haven't passed out with my POTS, but only come close, but always afraid I will. And during nighttime episodes of fluctuating blood pressure/pulse that occur once in awhile, I get leg cramps/shaking (well, it's really like my thigh muscles are tightening up really hard) and that can make my legs weak for awhile after if I try to stand up. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted January 1, 2012 Report Share Posted January 1, 2012 Weakness has always been my number 1 symptom, my worse, the one that scares me the most. I have collapsed many times due to the severity of it. Cannot hold my head or arms up to drive, etc. I have to lay flat for many hours, or many days. I get so weak that i can't talk or even move a finger.... or it is excruciating exhaustion and the weak feeling gets more intense with any movement. Im weak 24/7 but it comes and goes in severity. It's utterly horrible. This is the one reason why i refuse to talk to friends on a phone. It is so exhausting and i have several friends that just don't 'get this' and they get so mad but i try to explain, but to no avail. Oh well, they aren't friends if they won't listen. My first attack of this disease 9 years ago in feb, first showed itself when i woke up severely ill and i stood up and was so weak i collapsed to the ground. I've had to be taken to the er many times in a comatose/paralyzed state of intense, severe weakness for days/weeks. Ugh. Never fun, is it?tennille Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted January 1, 2012 Report Share Posted January 1, 2012 Yes, I have this symptom as well, like you said, not just in my legs but my whole body. Some days it's hard to even hold my arms out enough to type on my laptop! I don't know what it's from--if it's that I'm not getting enough blood to my limbs or what, but it's up there with dizziness and fatigue as one of my most annoying symptoms. Quote Link to comment Share on other sites More sharing options...
issie Posted January 2, 2012 Report Share Posted January 2, 2012 Yes, I have the whole body thing - but when my legs won't pick up that's a real problem. My hubby will just grab hold of me and hold me up and kinda pull me along and I can get the nerves to wake up and start again. As for picking my legs up - sometimes he will just physically pick them up and swing me around to get into the car. It's awful if we're in the truck. Even though I'm tall, I can sit my behind down but can't do much more - don't have the strength in my arms to pull myself into the truck and can't swing my legs and body around. I just start laughing. Rather laugh about it than cry. LOLIssie Quote Link to comment Share on other sites More sharing options...
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