Darlene Posted April 2, 2012 Report Share Posted April 2, 2012 i went to the hospital today to get a copy of my medical records for ssi. i do not like elevators, so i took the stairs. by the time i had gotten to the top i couldnt breath, my heart was beating faster then i could count, and i had this burning sensation in my arms and chest, and my hands were shaking. i almost went back down to the ER, but i knew i couldn't make it another step or i would be out of breath completely. has this happened to anyone else? Quote Link to comment Share on other sites More sharing options...
Darlene Posted April 2, 2012 Author Report Share Posted April 2, 2012 not to mention, went to oak openings yesterday. thought we were going for a little walk, ****... we got lost on a trail in the woods. after an hr and a 1/2, my legs (upper legs) were hurting so bad. i have muscle weakness in my upper arms and upper legs. i really think there is more going on with me then just dysautonomia. i am going to ask grubb if he can refer me to the cleveland clinic. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 2, 2012 Report Share Posted April 2, 2012 I walked up 3 flights of stairs a month ago at a hotel because I don't like an elevator either. I made it, but I was so out of breath and heart was racing by the time I got to the room. Mine is definitely from de-conditioning! The only reason I could do it was I can do almost anything for a few minutes, but after that, the symptoms are just too much to continue. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 3, 2012 Report Share Posted April 3, 2012 I do not like elevators because after I get off it, I loose my balance and will have this very strange sensation, it will feel like the floor is moving up and down, like I'm bouncing. It usually fades after a minute or so.I have difficulty breathing with racing heart whenever I climb stairs (I have been like this for more than 50 years!). Quote Link to comment Share on other sites More sharing options...
cmreber Posted April 3, 2012 Report Share Posted April 3, 2012 About two years ago I was hiking, surfing, riding dirt bikes, snowboarding, kickboxing...you name it. Then I had a sudden onset of POTS, began fainting with small amounts of activity & couldn't even walk through the grocers store anymore. Since then, things have gotten better & I have found a beta blocker that really helps, but I STILL find stairs to be my ultimate nemesis! Lol. Honestly, I can't make it the whole way without breaks if there are more than six, and by the time I get to the top I am out of breath and my arms feel like they don't have any blood anymore (if that makes any sense). I think a big part of it is the constant change of position. The other thing I cannot do is jump rope anymore! Quote Link to comment Share on other sites More sharing options...
anna Posted April 3, 2012 Report Share Posted April 3, 2012 This is the sort of thing I have had all my life! Stairs, inclines, or carrying something heavy trigers this response! I am fine on the flat and can walk for miles, unless it is very hot and humid, I used to be one of my schools fastest 100m sprinters, but would always get the symptoms you describe, northendarlene. So I can not put it down to de conditioning in fact, my pulmonary tests came back very normal, for someone that was younger than me at the time ha ha, but the thing that was picked up then was that my lungs expanded way more than the average, so I was told I should be extra fit! Quote Link to comment Share on other sites More sharing options...
corina Posted April 3, 2012 Report Share Posted April 3, 2012 anna, i'm like you. can walk for about an hour now but steep stairs and carrying heavy stuff are a problem. i don't think deconditioning too, but can't think of what could cause it. Quote Link to comment Share on other sites More sharing options...
anna Posted April 3, 2012 Report Share Posted April 3, 2012 I have not had a good explanation for this from my doctors yet, but my 3 children are the same as me. Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted April 3, 2012 Report Share Posted April 3, 2012 Unfortunately, I think that is a really common problem. For us, that was the main reason we moved to a 1 story home. I couldn't manage to go up the 1-flight of steps without getting out of breath.Moreover I had to retire from work several years ago because my work involved travel to Europe where there were lots of steps and steep streets.I have asthma but that is not the cause of the problem. I have also had cardiac nuclear stress tests and my heart function is fine, thank G-d. It is just POTS. Which, I guess, is somewhat reassuring. Quote Link to comment Share on other sites More sharing options...
kayjay Posted April 3, 2012 Report Share Posted April 3, 2012 I HATE STAIRS!!! for me it is not deconditioning. Even fit I had major problems with stairs and jumping jacks! Quote Link to comment Share on other sites More sharing options...
forevertired Posted April 4, 2012 Report Share Posted April 4, 2012 I have problems with stairs too. For most of my life I have gone up stairs almost everyday, as I have always lived in a 2 story home, my job is on the 2nd floor, and in school my classes were on different floors. When I developed POTS, I suddenly had a problem where I would be out of breath going up stairs, I would feel palpitations, and I would become quite fatigued, which didn't make sense to me, as I have gone up stairs almost every day of my life for many years. I knew it was not deconditioning, as how could it be deconditioning if I had been doing it almost every day before, and still do it everyday?I have found that since I have developed POTS I become out of breath and can feel my heart beat if I carry heavy things. Also, Jumping jacks and any other form of strenous exercise, cause me to be out of breath, have chest pain, and feel like I am going to faint. I don't think this is do to deconditioning either, as before I developed POTS I was riding over 30 miles a day on my bicycle, and doing several exercise programs. I also find it hard to go up steep hills, as that causes me to be short of breath.That is not to say, that now I am not out of shape in some regards. I admit I am especially when it comes to cardio exercises, just that in the beginning these symptoms could not be caused by deconditioning. Also, since I still go up stairs everyday, even though it causes my POTS to flare, I don't think my being out of breath when going up stairs, is caused by deconditioning. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 4, 2012 Report Share Posted April 4, 2012 Stairs are a huge no no for me. When I had a huge POTS flare in October I lived in a 3rd floor walk up. Before the flare I could run up the stairs with no problem. After the flare I needed to walk up with a folding chair to sit at every landing (every 8 steps) Took me 20 minutes to get up stairs. I was a prisoner. Thank G-d I moved to a 1st floor apt. Now I go out everyday. My shortness of breath walking up stairs is just scary. My theory of the cause is that it increases the blood pooling and the blood pooling weakens the energy and/or hydration. Maybe it is a metabolic issue for people who have pooling away from the the chest area. HR going faster maybe causes more energy burn which makes it worse. I read somewhere that Dr. Grubb said POTS people use 3x as much energy as regular people. Anyway I'm digging it my theory by going to see a neuro-muscular specialist soon.. Also I think the people with confirmed Mito problems have already found part of the answer.. Too bad Mito problems don't have great treatment remedies... Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 4, 2012 Report Share Posted April 4, 2012 Maybe I'm feeling this the wrong way, but since I said I feel mine is due to de-conditioning, I feel like people think I'm trying to explain everyone's inability to climb stairs as nothing but de-conditioning. I'm not. I myself am de-conditioned after 6 years of not being able to physically do much due to POTS. In the beginning of my POTS, I would have been able to walk those steps and not be out of breath. I just would have had the racing heart and feel like fainting.Are no others de-conditioned after having POTS awhile? Quote Link to comment Share on other sites More sharing options...
forevertired Posted April 4, 2012 Report Share Posted April 4, 2012 Maybe I'm feeling this the wrong way, but since I said I feel mine is due to de-conditioning, I feel like people think I'm trying to explain everyone's inability to climb stairs as nothing but de-conditioning. I'm not. I myself am de-conditioned after 6 years of not being able to physically do much due to POTS. In the beginning of my POTS, I would have been able to walk those steps and not be out of breath. I just would have had the racing heart and feel like fainting.Are no others de-conditioned after having POTS awhile?I do admit I am somewhat de-conditioned, especially when it comes to running, weight lifting, and other cardio exercises. I know that if my POTS just magically went away tomorrow, that I would not be able to go back to the amount of exercising I used to do. I do believe that everyone after a period of time (especially if it is years) of not doing something say lifting 50 lbs of weight or running 20 miles will become de-conditioned and will have to work back up to lifting that amount of weight and running that amount of miles, without hurting themselves. My only point is that I don't think my issue with stairs, steep hills, and carrying a backpack are related to de-conditioning, as I have been doing all of those things almost every day for most of my life, and still do those things, which leads me to believe those issues for me are not related to de-conditioning, simply because I have not stopped doing those things. Whereas I have stopped lifting 50 lbs, and have stopped running, and have stopped doing jumping jacks, and have stopped going to water aerobics. Because I have stopped doing those things, I am de-conditioned on those things. Yes, it was the fatigue and shortness of breath from POTS that initially caused me to stop doing those things, but I could have still have done some of the exercises I used to do without a lot of harship, maybe for a lesser amount of time, but still could have done it.I don't think anyone is arguing that they have or are becoming deconditioned over time, I think they are saying POTS is what caused them initially to have issues with certain things, such as stairs, that has lead to them becoming de-conditioned. However, they are saying it was not de-conditioning that caused them to initially have problems with stairs, however, now de-conditioning may be a part of their issues with stairs other than just the POTS. Your example of in the beginning of you having POTS and feeling like fainting when going up stairs, and then after a few years being out of breath when going up stairs is a good example of that. An example of mine I can state related to that is, that in the beginning before I got POTS, I used to walk a lot. When POTS and my other health problems flared for me it became extremely painful and hard to walk farther than a short distance due to my parkinsons, my POTS symptoms were chest pain and shortness of breath, so I stopped walking as much. Now that I have my pain disorder under control and POTS somewhat under control, when I walk long distances, my legs will hurt, not because of my pain disorder, but because I am out of shape, from not having walked those distances in awhile. I'm sure if you were to ask, a number of people with POTS on this forum would probably be able to state something they have become de-conditioned doing, even if it is not going up stairs. Quote Link to comment Share on other sites More sharing options...
mwise Posted April 4, 2012 Report Share Posted April 4, 2012 I too am short of breath, heart races and feel weak going up and down flights of stairs even with a landing break in-between. Before Dysautonomia, I had no problem doing stairs, running, jogging and excercising, etc...Deconditioned or not, stairs are difficult, but I keep doing them because I have a 2 story home and want to maintain or should a say try to keep some type of normalcy in my life with activity. I just take frequent rest periods. Quote Link to comment Share on other sites More sharing options...
Tuesday Posted April 4, 2012 Report Share Posted April 4, 2012 I completed a 12 mile obstacle race last month, and the day I came back to work I almost passed out from being dizzy and short of breath after walking up 3 flights of stairs. It's definitely not deconditioning in my case! I don't understand how I can run for hours and hours and not have any problems, but as soon as I start climbing stairs, I'm done for. Such a weird disparity. Quote Link to comment Share on other sites More sharing options...
corina Posted April 4, 2012 Report Share Posted April 4, 2012 Sue, I was def de conditioned after over 10 years of POTS and being in bed a lot in the last 2 years. But when I started octreotide I was admitted at rrehab again and I started to work on condition. The good thing now is that I can recover where I couldn't before. I can walk for about an hour now can do about 15 minutes on my exercise bike. I swim at rehab once a week. Still climbing stairs gives me a very forceful heartbeat and high hr, drying myself after showering does that too and lifting heavy (for me) things sets the dys off again. I accept it but would like to know why. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 4, 2012 Report Share Posted April 4, 2012 Me too! I wonder if its just the mechanism of the body when its climbing stairs? the up and down movement of the legs, tightening of the core and muscles? without knowing it we probably use more oxygen, etc when climbing stairs as opposed to just walking maybe?Bren Quote Link to comment Share on other sites More sharing options...
Joann Posted December 17, 2012 Report Share Posted December 17, 2012 Has anyone discovered why so many have problems with stairs, inclines and lifting? I too cannot do these things and yet some days can walk long distances with no problem. I could understand a bunch of stairs, but just one level seems crazy. Especially when many of us seemed to have been in such good condition and able to do these things daily.For me the effects of doing stairs can last for days, and sometimes I am not immediately effected but I start to feel bad a little bit later?The doctors keep telling me to try and do a few stairs every day and then add to this, but it does not work.Has any doctor given an explanation for this? Quote Link to comment Share on other sites More sharing options...
anna Posted December 17, 2012 Report Share Posted December 17, 2012 The only thing I have been told is that it is because I am unfit!!! I hate it when the cardiologist takes one look at me (I am over weight) and says this is all because you are a little too heavy blah blah, I had this issue all my life I was thin until I had a rapid onset of weight in my early 40's. I think it might be linked to something like poor left ventricular function, as many of my family have gone on to have cardiomyopathy. Quote Link to comment Share on other sites More sharing options...
issie Posted December 17, 2012 Report Share Posted December 17, 2012 I have left ventricle dysfunction too, anna.Issie Quote Link to comment Share on other sites More sharing options...
corina Posted December 17, 2012 Report Share Posted December 17, 2012 Issie and Anna, I'm diagnosed with low pressure in my left heart chamber. is this what you are talking about? (sorry language problem I'm afraid!) Quote Link to comment Share on other sites More sharing options...
alexhunterus Posted December 20, 2012 Report Share Posted December 20, 2012 This happens to me A LOT. Even just going upstairs at home makes my heart rate go to 150 and it makes me really out of breath. Feels like I just ran a mile. Not really sure why this happens I always thought it had to do with my mild asthma. Quote Link to comment Share on other sites More sharing options...
Nathan Posted September 23, 2021 Report Share Posted September 23, 2021 On 4/3/2012 at 12:33 PM, anna said: This is the sort of thing I have had all my life! Stairs, inclines, or carrying something heavy trigers this response! I am fine on the flat and can walk for miles, unless it is very hot and humid, I used to be one of my schools fastest 100m sprinters, but would always get the symptoms you describe, northendarlene. So I can not put it down to de conditioning in fact, my pulmonary tests came back very normal, for someone that was younger than me at the time ha ha, but the thing that was picked up then was that my lungs expanded way more than the average, so I was told I should be extra fit! Hey Anna, Ditto. I'm having same symptoms. Have you found a way out as climbing stairs, inclines are nightmare as symptoms mimicking cardiac arrest..Any drugs/supplement helping? Please do reply. I'm goin insane due to these symptoms. Regards, Nathan Quote Link to comment Share on other sites More sharing options...
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