Weak legs!

[katcanny]

Hi all,

just wanting some advice from everyone that has had more experience than myself with POTS. Today has been a bad day for myself very symptomatic, tired, short of breath, generally feeling lousy and now my legs are feeling really weak like if I get up they won't hold me for very long! Has anyone else had this symptom? It is a new one for me and I'm not sure whether this is going to turn out to be a trip to the ER or not!! Please any advice would be great for me at this stage 

[bellajulz]

I've recently had another relapse after dealing with pots for the last 8 years.  My legs tend to feel weak and numb and heavy.  It's the feeling of not being to hold myself up if I were to stand.  It comes and goes, but definitely part of my pots.  

Hope this helps in some way.

[nooniegirl]

I have suffered from weak legs on numerous occasions and about two years ago I had lots of nerve testing on my legs but the results were all clear so I was told most likely to be another POTs symptom

 

[katcanny]

Thought I would update while I'm lying in a hospital bed! Thank you for your replies it gives me some comfort that it can be a typical symptom. I came to the hospital feeling really yuck from about 3am weak legs all day then bad consistent chest pain and shortness of breath so I have been admitted and I'm guessing they will play around with my medication tomorrow fingers crossed I get to see a POTS specialist that works here 

[corina]

So sorry katcanny! Hope you will be on the up real soon!

[TCP]

Yes, I have very weak heavy legs. They feel much worse when I am having a bad day. 

[katcanny]

Thank you for the kind words corina, and the comment TCP. Been in overnight just pumping me full of Iv fluids not helping much but really what else can they do at the hospital. All standard tests done to make sure I haven't had a heart attack and other than that all tests came back normal. So I will probably be home this afternoon! Fingers crossed 

[DizzyGirls]

So sorry you had to go to the hospital!  We are well acquainted with it too!  No fun, that's for sure!  When my daughter is in a situation where there is too much stimuli and her POTS is going crazy, her legs just give out from underneath her.  We were at a wedding recently, the music was loud, full of people, hot, and she had been sitting for a long time, when she went to stand up, her legs buckled underneath her!  This happened 3 times before they were able to hold her up.  Sometimes she just passes out.  For this instance, though, it was just the legs.  I always remind her to make sure that her bottom half is ready to follow her top half!

Take care and hope you feel better soon!

[Stephanieann]

Yes, I experience weak legs too sometimes. It was worse when I was on gabapentin, so sometimes it could be a med side effect. Sorry you are in the hospital but glad they are helping you. Hope you feel better soon!

[katcanny]

Thank you for everyone's kind words still in hospital, off for another ct but with dye this morning I believe to check for blood clot in the lung? Anyway they upped my fludrocortisone to 2 tablets a day and that knocked me hard last night, shortness of breath, weak, out of it brain fog, night sweats and woke up feeling like I was run over by a truck I'm really tired and weak. Has anyone else been on that dosage of fludrocortisone or florinef? 

[katcanny]

Just updating I am now out of hospital and back in the comfort of my own bed ? After numerous tests nothing was found and they think it was just a flare up of my POTS they have now put my meds up to two florinef tablets per day. Has anyone else used this dosage before? My Fitbit heart rate monitor has shown my heart rate stopped this morning so I'm starting to freak out maybe it was just a glitch? Anyone else had this problem?

[corina]

I hope it was just a glitch but if you're seriously worried you may want to call your doctor! I couldn't tolerate Florinef and don't know what is a "normal"(everyone is different so I think there is no normal here!) dosage! Perhaps others can chime in? Hope you'll be on the up soon katcanny!

[katcanny]

Thanks corina,

i am guessing it was a glitch with my Fitbit as I was awake and in bed at that time it might have just come loose and not able to get a reading? It hasn't happened again and I'm feeling ok this morning as I'm sitting in bed drinking water before I start my day ? I was very tachy yesterday I'm hoping I have a better day today and my body starts responding to this up in my florinef. I have a holter monitor fitted tomorrow for 24 hours so I'm hoping if there is anything wrong with my heart ❤️ I will find it over the 24 hours. As my sister says when I have had chest pain' I'm just a bit potty' it makes me laugh ? I also have an echocardiogram in 6 days too so after all the ecgs and chest X-ray and ct scans of my chest surely after these last two tests I can get some piece knowing that there will be nothing wrong with my heart ❤️ What tests have other people had to check their chest pain wasn't heart health related?

[green]

Yes. And I have had periods in my life where my legs were weaker. 

Also, right now, they hurt like crazy! I am lying on my back at the library with my feet on a chair and my back on the floor because I did single-leg squats yesterday and they hurt so much.

Did you, perhaps, exercise recently? (like in the past few days)?

Even if not, don't get too down about leg weakness - it may come and go over time.

[katcanny]

Thanks Green,

i guess it's more the worry that my legs will just give out on me. I hate feeling so weak, before being hospitalised and being discharged with POTS I was walking every day about 8 kms I was eating well feeling fantastic and then bam ? I was out of it and now I struggle daily to come to terms with my diagnosis. I tried to go back to work and ended up with a flare up and back in hospital for three days. How do you function on bad days? Are you working? 

[green]

Hi Katcanny,

Well, I am a Ph.D. student. I often take 'soft' days off - which means, I have days where I just don't really get much done. I really hate it though. I hate how hard it is for me to be consistently productive. 

I almost never have a day where I can't leave the house. I do get a lot of nausea, fatigue, dizziness. But, it has been better the past few years.

It definitely comes and goes in intensity.

 

[katcanny]

Thanks for the reply green! ? I hate feeling weak when I felt like superwoman a couple of months ago and I'm trying to make my son understand that some days I will feel better than others without putting this stress onto him. He needs to just be a kid it just gets hard when wants to randomly do things like play cricket or go to the zoo thinking about doing these things makes me nervous and angry that I use to be able to things like that on a whim. 

[SarahA33]

Hi! Just wondering if the doctors think it could be blood pooling causing some weakness? Sometimes when I'm standing in line, for instance at the pharmacy the other day, my knees buckled the exact same way yours and the others describe. I put my compression socks on and didn't experience any further weakness while grocery shopping that same day. It could've just been a coincidence though.

[Guest]

I get that type of leg weakness regularly.  It feels like they're Jello, and I'm very sure that one of these days the muscles will actually let go on me.  It seems to be the most intense in evenings, but often happens (to a slightly lesser degree) throughout the days too.  I try to limit trips upstairs (even though our bedrooms, only bathroom and laundry room are all up there), and lay down as soon as I get up there.  I also lay down as soon as I get back downstairs.  Sometimes I skooch up the stairs on ma butt, because I'm sure my legs are going to give out.  It really is a horrible feeling.  Not as often, but sometimes, my entire body goes weak like that.  

[Nemesis]

I had Hemiplegic migraine which was paralyz my left leg or weaken it after cured it and Hemiplegic migraine gone but after my dysautonomia my legs especially left became weak and cause rapid heart rate

So I do pots reconditioning exercises and it effective

[Guest KiminOrlando]

Hi Katcanny,

I was told by my doctor that .1mg is a 'normal' dose of florinef. He said he doesn't raise the dosage. It either works or it doesn't. That was several years ago, so he may have changed his mind due to more recent research. Interesting how they come to their conclusions. 

Can you feel a difference with the increased dose?

I hope you are feeling better.

Kim

[angelloz]

Draven..I call mine the jelly legs too. It comes and goes for me.

[katcanny]

Hi everyone, 

i have been on the 2mg of florinef for a month now and it has helped my blood pressure posturally there is barely a drop or rise depending on what my body decides to do on the day. I wear my compression stockings knee high every single day even in this Aussie heat as it was 34 degrees yesterday and I was still wearing them!!! I have come to realise that my legs go week before I get a flare up of my symptoms generally I am functional for 3 weeks and then I get a flare up lasting about 4 days before feeling ok again. Does anyone else get regular flare ups?

[Katybug]

Have you thought of keeping a calendar that tracks this 4 wk cycle of POTS vs. your menstrual cycle to see if there's a correlation?  Many women have a harder time with their POTS symptoms the week before or week of their period. There's quite a few old threads on that subject if you want to do a search for them. 

I, for example,  apparently can't handle estrogen in my body of any kind.....my own or from various forms of birth control. So, I am on Depo Provera shots which has stopped my cycles and is a progesterone based drug. While I still have POTS,  I don't have the guarantee that 1 week a month will be worse than the others.

[TCP]

Hi. I agree with Katybug about the hormonal changes every month. I still have them and I had a hysterectomy years ago. I certainly dip every few weeks and then have several really rough days.