porque Posted January 16, 2005 Report Share Posted January 16, 2005 Well the last two nights were quite the nights for me. My fiance and I took his little nephew to the monster trucks. They were pretty cool but really loud. Dang all of our ears were ringing the last two days. His nephew stayed overnight with us and we played video games until like 3AM...then the next morning the kid decided to wake up at like 8...way too early for us...we like to stay up late and sleep in. Anyway we had to go to a birthday party yesterday at 3. Then we had my fiances company party at 7. It was a blast! They had gambling stuff set up. I made it my priority to stay with his boss at the craps table all night. I won the equliviant to 2.3 million dollars. (I wish it was real money) We had a auction for prizes at the end of the night with the money...we left with gift cards and a playstation 2. It was fan. Anyway I stood completly still at the craps table for at least 2 hours. I felt fine. No lightheadedness, no headache, no plapatations nothing. But after I left the table my fiance said dang your legs look kind red. They were pretty red but nothing to write home about. My question is why would they get red like that? I know blood pooling but why does it pool? I dont have EDS or anything, I am so not flexible!! Also I never get a drop in BP when standing, and as long as I have my beta blocker, my HR is fine. In fact my BP ususally rises when I stand for a long period of time...doesent that mean my veins are constricting or could it be my arteries are consitrict extra tight to make up for the lack of venous constriction? Is this nerve damage or denervation and why dont I feel symptomatic when this happens? What can be done to help this? Link to comment Share on other sites More sharing options...
Guest GayleP Posted January 16, 2005 Report Share Posted January 16, 2005 Is this some kind of joke? Link to comment Share on other sites More sharing options...
porque Posted January 17, 2005 Author Report Share Posted January 17, 2005 Why would this be some kind of joke??? I dont think this is funny at all...its scary! Link to comment Share on other sites More sharing options...
MightyMouse Posted January 17, 2005 Report Share Posted January 17, 2005 I don't understand what's scary? Other than redness, you didn't have any symptoms, right? No bp drop or heart rate rise, no dizziness, nausea, brain fog, tunnel vision, pain, etc.? If that's the case, then you probably just have minor issue with vasodialation. If you're not symptomatic, then there's no reason to do anything. If you are symptomatic, then you could use compression stockings and/or use the lower body exercise recommended by Low, et. al.Nina Link to comment Share on other sites More sharing options...
porque Posted January 17, 2005 Author Report Share Posted January 17, 2005 Thanks Nina...its just scary cuz I dont know what is causing it and it quite frankly looks ugly! I hate it. It wasnet too bad though so I guess I'm lucky. It kind of makes sense to me now. My veins could have been damaged and lost thier tone...so I need to lift more weights to improve their tone so I can recover. That would explain why when I lay down my BP drops a bit more than it should...cuz blood is still pooling because the vessel capasity is high...you dont have to be vertical to have blood pooling a tad bit. It would also explain the rise in BP I guess. What lower body exercise are you refering to? Link to comment Share on other sites More sharing options...
Guest GayleP Posted January 17, 2005 Report Share Posted January 17, 2005 I'm sorry if I sounded rude. And I don't mean to minimize that your red legs aren't scary. But here is the thing.You were out having fun last night. You stood still playing craps for 2 hours without feeling ill or lightheaded. You basically had no symtoms . Your only complaint is that your legs are red. In the past you've talked about playing sports, roller blading etc..Forgive me but I'm not having a good day today and when I read a post like this I get a little irritated. It seems like you are in a different place than most of us here. Yes, we all function at different levels but I have to say it feels like you are at a level way higher than the rest of us. I've asked you several times how all this is affecting your life and you haven't really answered me. For example I used to be athletic, I worked full time, felt great and was the picture of health. Now I can barely take a 15 minute walk, I can't work, I feel crappy much of the time etc... All the while I know that it could be a lot worse. And that there are people on this board a lot worse. But the one thing we all have in common is that this illness has changed our lives in some way and has forced limitations on us..So again forgive me but I still don't understand how your life has changed. BP and HR changes that are not significant are just that unless you are symptomatic.Maybe if I can understand better then I will know what it is exactly that you want from this board. Becaue right now I don't. Link to comment Share on other sites More sharing options...
porque Posted January 17, 2005 Author Report Share Posted January 17, 2005 Gayle,Sorry you are having a bad day. Yes I am aware that I amfor the most part highly functional, but I am nowhere near where I was before. I was a total SPAZ. Not in a bad way...in a good way. I could handle school (6 classes per semster...in a microbiology major) playing 1 sport for my school and one sport outside of school in the same season, and still found time for a 20 hour a week job and a crazy social life. I never stopped, never got tired, never got ill. Now I can go to school and work but I am much more tired. I actually have to sleep 9 hours a night and get headaches, sometimes dizziness and basically live in fear of the unknown every day for a year now...it was a year yesterday...I try not to dwell on it. I am scared cuz nobody can find anything wrong and all the major research centers I try to get into tell me I am too healthy and will make a completly revcovery in about a year. Well hello it has been a year! Where is my recovery. I dont like not having a plan in life. This has put my entire life on hold. I almost didnt go to school this semster cuz whats the point of going to med school if I can do my job to its fullest after all the hard work. I cant play sports anymore and Sports are a HUGE part of my life...they are my way of relieving stress. I had olympic scouts watching me at one point...now nothing. My fiance hates me now cuz I cant do what I used to do and is not sure about what kind of future we will have. I know I will recover, its just my intuition, but I really want to know what causes this so I wont worry abou tit returning in the future. This is not my destiny by any means...dont ask I just know, but this illness has hit everyone of my pet peeves hard, espically my biggest one...not knowing why!!! I have to know why...I've always been this way. I am very very stubborn and persistant and I believe that IF their is god up there, then he made me this way to fight crap like this and to never take no for an answer...I never give up...perserverence should have been my middle name. I just surf around here, to look for clues about what avenue to look into next, and search for hope. Through this site and others I have learned that a lot of people DO recover...I have talked to a lot of them and I can see their similarities...and I fit right in with them. I realize that they dont lurk around these sites any longer, because they have a life again. But I still would pop in from time to time, because believe it or not I want to help. Even when I do recover, I still will remember this horrible nightmare and wish to study medicine and become an ANS doctor and help people who are suffering. I have found out the hard way that there is a lack of knowledgeable ANS docs, and I want to fill that void. Even if a few years down the road I decide that medicine is not for me, I would want to be an ANS activist. I believe that I am a special person and that 1 person can make a difference. This illness has made me into a bitter and sour, and I just want to get better so I can be that happy-go-lucky, smiling person again. I would go to counseling but I dont believe in it at all. I mean we dont have mental problems...we have a physcial problem causing a mental problem...if ya took the physcial problem away...poof...the mental one would be gone too. Besides how is someone not suffering gonna tell you how to cope with something devistating...they are gonna go home to their big house (bought by your money) with their loving family (dog and all) and then use more of your money and go to Hawaii for a romantic getaway...they really know how to tell someone how to cope with horrible things...I remember when I was aneroxic my parents made me go to therapy...ha that lasted one session...the lady was huge!!! She told me that what I was doing was unhealthy, and I looked at her and told her that eating all those krispy Kremes wasent exactly doing wonders for her cardiovascular system either! So that ended on a good note. Thats why support groups are awesome! Real people suffering with sympotms helping others. They know whats going on and how hey might feel. Thats just my opinion though and if counsleing works for you then thats awesome too. What ever floats your boat right?? Anyway I want to go have a drink and watch TV so I gotta go before I write a novel here. Just babling and trying to answer your question. My life has changed...and I will always be changed...even after recovery...I will appriciate life more and slow down a bit from time to time...and I will always wish that everyone who suffers from this orphan syndome finds answers and relief and can find a life once again. I feel sorry for everyone on here especially the ones who were hit with this crap overnight with prior history. At least if you have family members with symptoms or have had weird things like fainting or exercise/heat intolerence in the past you can piece things together and be like "well that *****...genetics/birth defects are a bummer...but when you get hit out of the blue...well if that is you, you know what I mean...it is really that much harder! Gotta go. I hope you feel better Gayle, Nina rest your muscles, and everyone else...dang heal already!! If only it was that easy right! Link to comment Share on other sites More sharing options...
MightyMouse Posted January 17, 2005 Report Share Posted January 17, 2005 I don't have a reference for the exercises. I heard Dr. Low describe them at the last NDRF conference in 2002, along with showing photos of the correct position to do the exercises in. From what I remember, it was lots of lower body and abdominal strengthening activities. Also, you can look at the "what helps" section of the primary DINET site, and see the section under the non-pharmaceutical interventions.http://www.dinet.org/what_helps.htm Link to comment Share on other sites More sharing options...
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