dizzygirl Posted January 29, 2006 Report Share Posted January 29, 2006 (edited) Hi folks..I am just like majorly irriatated tonight.. I attempted to amke a pot of stew for dinner..I made the darn beef stew.. but not with out fighting with my body first!It bugs me that I can even do simple tasks such as slicing mushrooms or peeling potaot's..let alone use my arms and hands to stir the pot!!GGGRRRR!!!!!!!!!!! I was slicing and dicing stuuf up and it took a total of 2 1/2 hours to get a pot of soup going!well etting to the point of my post.. it took so long b/c my hand/thumb kept going numb and and was sending pain up my arm.. well I had to keep stopping to regain feeling in the hand... I finally finsihed.. and my hadn is totally numb.. and totally purple.. even my finger nails are purple...purple all the way up my arm.. and its so cold..I;m just wondering what you guys do when you get numbness and pooling in your arms and hands??and what casuing the numbness? is the pooling casuing the numbness?thanks for listneing to me complain!!... I just get so frustrated that I cant even do simple everyday things anymore!!Melisssa did you find the body transplants yet?? Edited January 29, 2006 by dizzygirl Quote Link to comment Share on other sites More sharing options...
Meliss446 Posted January 29, 2006 Report Share Posted January 29, 2006 Sorry you had such a difficult time! I understand what it is like to think you are just going to do a little thing, and then it ends up being a much bigger undertaking than you expected. I do this all the time! I have had the same thing happen to me. My hands will be purple, and my finger nails will look hypoxic and turn blue. I think that it is inadequate circulation. I have been told by a few different doctors that when it happens, it is like my blood vessels just clamp down, and so the blood cannot circulate properly. In fact, when I had my TTT, after I came to from passing out, my hands and part of my arms were completely numb. The doctor told me to squeeze his hands to check for muscle weakness, and I couldn't even feel his hands let alone squeeze them. The nurse kept asking me if I wanted a warm blanket because my hands were so ice cold, and the doctor kept telling her that it was because I was clamping down to maintain my blood pressure. So at least for me, I think that is what happens. When I am up my vessels in my hands and feet just clamp down to keep my BP high enough. Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 29, 2006 Report Share Posted January 29, 2006 Hi,I have the same problem but I have not been told which is the cause. I believe that it's the blood pooloing that causes the numbness. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted January 29, 2006 Report Share Posted January 29, 2006 (edited) I get purple feet/hands as well, as well as numbness. I asked Dr. Biaggioni about it (I'm still at Vanderbilt) and he said he didn't know why they get purple, but ventured that it had to do with the -vessles clamping. So it's not pooling because of loose blood vessles, but pooling becuase of super-duper tight blood vessles... if that makes any sense. He said that it is a very common POTS symptom though. Edited January 29, 2006 by Dizzy Dame Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 29, 2006 Author Report Share Posted January 29, 2006 (edited) yeah during my TTT's.. ny hands as well as legs and feet turn pretty purple and get so cold.. I guess I am more frustrated then anyhting.. as I just want to able to cook or take shower or heaven forbid brush my teeth.. or sit up!!i think that maybe I need to talk to the Neuro about the numbness in ym hand/arm.. as it is getting worse. I get awake or sleeping.. thenwake up.. and I am totally numb.. and am shaking..I often will find my self when I wake up holding my left arm straight up in the air.. and I do this at times when i'm awake too.. and dont realize that I'm doing it (( ))).. I guess maybe i do it do get some feeling and something abck into my arm and hand.. i dont know.. I hate the not being able to feel things.. or the loss of strength and well lackof useage in my arm/ hand I just am at a lack of patients..and sensability tonight..b/c I really hate this pots invading my life! lack of postive thinking is morelike it tonight... Edited January 29, 2006 by dizzygirl Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted January 29, 2006 Report Share Posted January 29, 2006 (edited) Again, Linda, I know how you feel. I had a tilt table test yesterday and my whole right arm went numb after a few minutes. Bonnie (the head nurse) kept poking it, but I couldn't feel a thing! I wonder if all that lack of blood causes damage to nerves over time... Edited January 29, 2006 by Dizzy Dame Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted January 29, 2006 Report Share Posted January 29, 2006 Hi, when I had the TTT done my arms and legs got tingley and discolored. They had this weird bp cuff on one of my fingers....YEP, couldn't feel that finger at all!As for making meals that is one of the things I can still do. I do eventually pay a price. Usually by the time dinner is ready I am too exhausted to sit up and eat. It's aweful. I think it's great that you got the stew done, esp. because of the way you were feeling. I wish they sold potatoes already peeled and mushrooms cut up! Wouldn't that make it alot easier?! But, seriously it's great you got your meal done. Hope you atleast got to enjoy it.Jacquie Quote Link to comment Share on other sites More sharing options...
d4g7 Posted January 29, 2006 Report Share Posted January 29, 2006 I can relate also. My hands and feet go numb for weeks at a time - especially my right hand from my middle finger to my pinkie and that half of the hand - generally there is no feeling there at all.It started about 6 months ago - my neurologist isn't quite sure what it is, but believes it is related to the Autonomic Nervious System somehow.It's annoying, but I've learned to live with it.I play the pipes, and it is frustrating, as I can't actually feel the holes on the chanter with my right hand - so I have to rely soley on memory, and just hope that my fingers do what I want them to do.It's a real pain - I hope you can get relief from it soon. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 29, 2006 Report Share Posted January 29, 2006 I so very much get the numbness and my arms go totally asleep at night and I HATE THIS!!! I was just recently thinking of getting an MRI to see if there is any compression on the thoracic area causing this. Has anyone done an MRI cause of this or do you just live with it and chalk it up to another by-product of dysautonomia?tearose Quote Link to comment Share on other sites More sharing options...
Radha Posted January 30, 2006 Report Share Posted January 30, 2006 i dont get numbnes, but i do get red, hot, heavy hands, and pins and needles in the finger tips, which is really painful, wish i knew what to do to alleviate this!! i can only hold my arms so long! wish i knew why it was happening in the first place, it always happens after i eat, radha Quote Link to comment Share on other sites More sharing options...
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