Foxyblue Posted June 12, 2007 Report Share Posted June 12, 2007 Hello everyone, I have noticed over the last year my POTS has added a new symptom. My legs become weak if I stand too long and by the end of the day, they are downright painful. I have to put them up and I can feel them "draining". I don't know if they are draining actually, but that is the best way to describe how it feels. Well, this past month my lower arms and hands are starting to feel the same way. If I lift them up too much they are starting to feel weak and wobbly and I need to put them down at my sides. These seem like strange symptoms and I'm wondering if any of you on here may have heard of these or experienced these? I'm starting to get a little worried these might not be POTS after all , they might be something else.Any comments, I appreciate.Thank you!Bri Quote Link to comment Share on other sites More sharing options...
hannahsmom03 Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Bri,I am sorry to hear about your symptoms. Unfortunately I feel the same way but mine is mostly my left side only( arm , leg , hands) it is so scary and hard to tell anyone about I usually feel this way everyday and especially if I stand longer than a few minutes or writing or typing. I think the feeling in your legs may be the blood pooling , I know most days my legs are so weak and feel "heavy" My arms and hands feel like "jello" to. Having POTS and several other problems to is very overwelming at times especially if you have no one to talk to . But this forum has been wonderful and very comforting to know that you are not alone. Have you taken your blood pressure when you feel this way to see if it is low or your HR? I know for my self that can really make a difference. I wish I had more advice for you besides I know how you feel I hope you feel better soon. God Bless,Erica Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Bri,It sounds like you have blood pooling in your legs. That does cause pain. Do you wear compressing stockings? You may find some relief from them. It will help the blood to flow and slow down the pooling. It is also possible that you have blood pooling in your arms if they're always down at your side.Weakness can also be a symptom of POTS, so it is possible that this symptom is just getting worse or flaring up for you right now. As always, talk to your doctor about new symptoms that come up. He/she will be able to help you with what's going on. I hope you can find some good answers and relief for your symptoms.Rachel Quote Link to comment Share on other sites More sharing options...
corina Posted June 14, 2007 Report Share Posted June 14, 2007 hi bri,i experience the same for years now. as i wasn't able to get things out of the ktichen cupboards that were above me we recently remodelled our kitchen and changed it so that we don't have any hanging cupboards anymore. it makes a big difference for because now i can get everything i want whenever i want without asking my family to help me!i am a little scared about this also. i don't think it is weakness, but more that it might have to do with blood flowing out of the arms when we put them up. not sure though and i don't need to know. for me it was more important to get rid of another problem hope this helps a bit,take care,corina Quote Link to comment Share on other sites More sharing options...
flop Posted June 15, 2007 Report Share Posted June 15, 2007 I find that if I lift my arms above shoulder height that it makes me feel dreadful. The arms themselves feel weak and useless but it also causes my heart rate to race and I feel dizzy very quickly. Putting them down by my sides relieves the symptoms.My understanding is that this happens as when the arms are elevated the heart has to work harder to pump blood against gravity to the fingertips etc which causes the POTS reflex tachy and the tachy causes the other symptoms.Does anyone else have the same problem?Flop Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted June 15, 2007 Report Share Posted June 15, 2007 Flop your description of how it happens is very very similar to mine, i notice it alot when washing my hair, or trying to just put my hair in a pony tail. And it deffinetlly helps to bring my arms back down by my sides. I think your explenations makes sence and is seeming to be quite accurate. Quote Link to comment Share on other sites More sharing options...
flop Posted June 15, 2007 Report Share Posted June 15, 2007 Hi Mary,you're quite right that hair washing is one of the worst things for triggering my POTS symptoms. I have long hair but I am lucky that it is very dry and doesn't need washing as frequently as others have to wash theirs. There is no way that I can stand up and wash my hair in the shower. I usually try to get someone else to wash it for me while I sit in an empty bath. If I have to wash it myself I lean double over the bath with my head low and use the shower to just wash my hair. Blow drying and using caramic straightners are just as bad, I've found positions that I can twist myself into so that my arms are below my shoulders whilst styling (long unruly frizzy / wavy / curly hair).Whe I am feeling really bad with the POTS I just don't wash my hair at all then go occasionally to the hairdressers to have it washed and dried - a luxurious treat as they have reclining arm chairs with back massage function whilst they wash your hair at the basin, bliss!Flop Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted June 16, 2007 Report Share Posted June 16, 2007 My hair is alot like you described yours, LONG, curly/waivy, and frizzy! Gotta love it! I really like having long hair but dealing with it can be a pain. I usually lean over to wash my hair, when i am really sick i have my mom wash it, she thought i was really weird the first time i asked her to wash my hair, i still dont think she really gets that it bad for me! haha....but thats ok i guess eventually! I cant straighten my hair anymore since the straigtener gets to hot and make my symptoms flair from the heat, not to mention the lifting of my arms above my head! If there is anybody else out there who has good tips for dealing with hair they would be greatly appreciated! Thanks! Quote Link to comment Share on other sites More sharing options...
corina Posted June 16, 2007 Report Share Posted June 16, 2007 when i was in a very very very very very cold period (i mean when my body couldn't stay warm and made me so very cold even when the temperatures were very high) i took a hot bath daily and, when needed, i washed my hair lying in the bath to get it wet, come up to shampo and after a few minutes lied down again to rinse it. at that time, although difficult, it was the best way for me. fortunately, when i started mestinon it helped me to stay warm take care,corina oh and btw my hair is long and curly too (i used to have it shorter but not being able to go to the hairdresser made it long ) Quote Link to comment Share on other sites More sharing options...
Foxyblue Posted June 19, 2007 Author Report Share Posted June 19, 2007 Hi everyone, Thank you all so much for the comments. I just like to "verify" a symptom so i don't feel crazy. Family members try and understand but I still feel like a hypochondriac when I bring up a new symptom. As for washing and styling hair, I definitely get tachy and short of breath, too. I used to get so mad! My hair is quite long and when I'd have to stop every few seconds I would get so upset almost bringing on another panic attack. BUT. I must say, my Mom bought me a hair dryer holder and it works great! It takes a little longer to style my hair now, but it's ok. I sit in a chair, put the dryer in the stand and use my brush while keeping my arms low.You all should try one!Thank you again for "confirming" my symptoms. I think I will try and take my bp next time I feel that way. I'm seeing a neurologist next month. I've HAD IT with cardiologists!Bri Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted June 19, 2007 Report Share Posted June 19, 2007 I used to have the same problem when I would have to raise my hand for a long period of time in high school. I have the same problems washing my hair too. I tried to take Tai Chi and having to raise my arms up for a long period of time made me get so tachy and black out. (That's always fun when you're the youngest one in the exercise class and you need to sit down but the 80 year old is going strong ) Any advice on good exercise programs - I had a black belt in Kenpo before the POTS hit and desperately want to go back to Karate.Sara Quote Link to comment Share on other sites More sharing options...
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