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extreme weakness


Rachel
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I was just wondering - how much weakness is "normal" for POTS? Lately, even though I rest often, my weakness has gotten quite extreme, more than it has ever been in 10 years. I stumble a few times every day just walking in our tiny house because I don't have the strength to take even a few steps easily. My legs start to give out, but so far I have been able to catch myself in time or fall into a chair. Also, I've been losing my balance when I am standing still. I rarely stand still for more than a few seconds because I'll get faint. But I do stand still briefly sometimes. Just last night I bent over and was drying my hair. Next thing I knew I was falling backwards. Thankfully my husband was behind me to catch me. It happened again this morning as I was brushing my teeth. Usually I sit down to do this, but for some reason I stayed standing. Within 5 seconds my body just started leaning backwards without me even realizing it at first. Does this kind of stumbling or loss of balance happen to any of you? I'm going to the doctor tomorrow, so I'll talk to her about it. But I'd also like to hear what some "POTSies" have to say.

:rolleyes: Rachel

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Guest tearose

Hi Rachel, yeah, this happens and it is not good! I would consider your POTS not under control! Do as much as possible to sit or lay down until you get your body better regulated. Salt, salt and salt! You can get hurt when you get this bad and so you need to find a way out of this spell.

FYI, even on my good days I try to sit as much as possible and I never stand to dry my hair anymore! Get a hairdryer stand and sit down!

Please take special care to look at what your treatment plan is with your doctor. You aren't driving a car these days I hope.....

get well soon, tearose

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rachel,

i have been doing this for about 8 months now myself. i use a cane, even in the house sometimes. like a blind friend of mine, i have arranged my furniture so i can get around with something to hang onto, sit down on or just be out of the way, just in case. no clutter is allowed on the floors. i have a towel dry haircut and a shower stool, my toilet doubles as my chair, lid down and an extra towel on it.

i hope you get some stability in your life.

there are days that i can do pretty good and then i'll have a few days, or weeks, really bad days.

blackwolf

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Hi. I'm back from my doctors appointment. I have tried salt tablets in the past, but they never helped. But maybe they were keeping me from getting worse. So my doctor and I decided to give them another try. We're also changing my medication again to see if that helps at all. And, GOOD NEWS! :P I have finally found a cardiologist in the state who knows about POTS! My doctor here is going to have my stack of records from the last 10 years copied and sent. Hopefully I'll be able to get in for an appointment soon. Thank you all for your advice. It is helpful to learn how others deal with the weakness and stumbling.

:P Rachel

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Unfortunately, this is a way of life for alot of POTS patients. My wife and I are talking about moving into a single level rambler because of these issues. We bought an older farm house (one of her dreams), but the stairs and everything are killers for her. She had a really bad year last year and we are starting to make some life adjustments admitting that we aren't going to be able to fulfill some of her dreams. Her doctors have pretty much given up on the situation (they hung in there for a long time). My wife's cardiologist actually had her start exercises where she is supposed to stand in one spot for one minute. She was pushing herself too hard with that. Her physical therapist told her to try to start with 45 seconds. He is a cardiology PT as well. I don't think people realize how devastating dysautonomia can be.

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:D

Unfortunately, this is a way of life for alot of POTS patients.  My wife and I are talking about moving into a single level rambler because of these issues.  We bought an older farm house (one of her dreams), but the stairs and everything are killers for her.  She had a really bad year last year and we are starting to make some life adjustments admitting that we aren't going to be able to fulfill some of her dreams.  Her doctors have pretty much given up on the situation (they hung in there for a long time).  My wife's cardiologist actually had her start exercises where she is supposed to stand in one spot for one minute.  She was pushing herself too hard with that.  Her physical therapist told her to try to start with 45 seconds.  He is a cardiology PT as well.  I don't think people realize how devastating dysautonomia can be.

HOW ARE YOU? Sounds like this is affecting everyone. I am new, so I don't know much about your situation. We too have a bungalow with alot of stairs which is hard. If you need any help let us /me know Miriam

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