lgtaylor100 Posted September 9, 2011 Report Share Posted September 9, 2011 I have been suffering with POTS symptoms for about a year now but recently have a disturbing new symptom. It seems as if my legs feel weak much of the time when I am standing on them but also when I am lying down. I don't know if they actually are weak or if it is a sensation caused by blood pooling, although I don't understand why I would have this symptom while lying down or sitting. Midodrine doesn't seem to help much. My primary doctor is sending me to a neuro muscular doctor so maybe he will be able to shed some light on this symptoms. Does anyone else suffer with this? How do you deal with it? Do you think it is time for some compression hose? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted September 9, 2011 Report Share Posted September 9, 2011 Hi IgailI am also experiencing this symptom and spoke to my auto specialist about it. He has prescribed Mestinon to see if it will help with that and my chronic fatigue issues. I haven't started it yet as I am getting over a really bad cold and dont need to deal with side effects on top of it all. I will hopefully be starting Mestinon in the next week or so. I will let you know if it helps!Bren Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted September 9, 2011 Author Report Share Posted September 9, 2011 Thanks Bren. I have requested that my doctor prescribe Mestonin but he is hesitant somehow. Please let me know how it works out for you. Chronic fatigue is my most disabling symptom so if the Mestonin could help both things I would be thrilled. If others are taking Mestonin for weakness please let me know. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 9, 2011 Report Share Posted September 9, 2011 Weak legs was one of my sons first symptoms. At times he had to put his arms around our shoulders in order to walk. He described them as 'licorice' legs. Once he started Doxepin, that symptom stopped and has never returned.Christy Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 9, 2011 Report Share Posted September 9, 2011 I have episodes of weak legs. Licorice legs is a good description. Some days they feel ok, and others they feel very strange and weak. It happens to my arms too. The past few days my legs have also HURT so bad - so bad I want to cry. I think seeing a neuromuscular Dr. is a good idea. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 9, 2011 Report Share Posted September 9, 2011 I call mine "spaghetti legs." Do you exercise at all? Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted September 10, 2011 Report Share Posted September 10, 2011 I got this today. I was walking through a store and doing really really good, when all of a sudden, I got weird feeling legs. I'm not sure if mine are really weak or if they just kind of feel that way, but it kind of feels like my brain just isn't sending the right messages to my legs to be able to walk right. I get that weird feeling in my legs while laying down and sitting down sometimes. I exercise every day. I do 15 minutes on the recumbant bike, 25 calf raises, and weights. I have been doing the exercises for a year now, and I still can't get more than 20 minutes on the recumbant bike because my legs get too weak. It is weird too, because I can walk quite a bit as long as I take a lot of breaks, I just can't walk for very long straight. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 10, 2011 Report Share Posted September 10, 2011 I have this all the time also, I call it my wet noodle legs / arms. I'm not sure if a POTS things or a mito thing. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted September 10, 2011 Report Share Posted September 10, 2011 I used to get this a lot. I still do but to me it feels like a lactic acid burn/weakness - like being at the gym and your muscles are really fatigued but you just have do do 2 more leg presses and the lactic burn/weakness is felt. I get it just by getting out the car or bending down and picking up my bag or the cat - feels like that extra weight is far too much for my legs!! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 10, 2011 Report Share Posted September 10, 2011 Wow, PotsyTurvy, you're doing great on an exercise routine. I try to work out 3 to 4 times a week, but can't tolerate much weight work. I usually do about 30 minutes at the gym on the elliptical, or at home on my treadmill. Then ab work, but I can't work my arms too much due to my small fiber neuropathy/pain in my hands and wrists. I haven't found that exercise helps with my weak leg feelings, though. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted September 10, 2011 Author Report Share Posted September 10, 2011 I think I am going to try leg weights and walking in the evening when it is cool. I have not walked all summer because of the heat and I really hate treadmills. I'll let you know how it goes. Any suggestions for protocol?Also my appointment with the neuromuscular doctor is on October 5th. I'll let everyone know how it goes. About the time that the leg weakness started I also started getting occasional muscle twitches. Does anyone else have these? I wonder if it connected. Quote Link to comment Share on other sites More sharing options...
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