Legs Turn Blue When Standing And Very Painful

[blsvlo]

I am still not dx have had several tests and everytime I see a doctor I tell them about my legs turning blue when I do my daily stats. which is the only time I can get out of bed. I try to stand at least 6mins to get all the readings and my legs ache so so badly and they turn blue and blotchy. Has anyone had this???? any ideas of why my legs turn blue and is this dangerous?????

the doctors have no interest in looking at my legs to see what I'm talking about...... what is with that!!!!

my readings are 60 laying to 120 plus bpm standing

ttt showed 130 to 160 the whole 16mins.

hugs to all

Lisa

[flop]

Hi Lisa,

this sounds like acrocyanosis - the mottled discolouring of the legs that can happen when POTS patient's stand upright. I was reading something about this last week (if I can find the link or a picture I'll post it later when I have more time). It was initially thought to be due to gravity pulling blood into the legs but is now thought to be possibly due to reduced blood flow to the skin of the legs (mechanism unknown).

More later,

Flop

[pat57]

are you stilling still? I try-always to be moving- if I'm standing, because of leg discomfort. I'm sure mine would be blochty and probabaly redish if I stood still.

[Ernie]

Hi,

You did a TTT with HR of 130 to 160 and you are still not diagnosed?

[roxie]

HI Lisabeth! Welcome, I hope they your dx figured out soon! I have had the blue pain problem ever since I got sick, whihc was 9 1/2 years ago. We have always thought that it was just from the blood pooling, thats what my dr said.

I get it in my hands, my feet/legs, and have been recently noticeing that my nose turns all red and blotchy at night also.

This problem even happens when I am sitting up and it happens fast upon position change. although I believe its related to POTS, I don't know if every patient has this problem. When I go to the dr's residents always ask if my legs swell and I have to say, no they turn puprle. They alsp feel like ice, at least my hands ppl are always commenting.

my best advice would be to get support stockings. Hope this helps

Madeline

[blsvlo]

thank you... glad to know i'm not alone.. when I say something about my freezing hands and feet and the blueness they just look at me funny....

Yes I did have 2 ttt and both showed the whole time in standing postion my hr over 140,,, but they say it cannot be POTS because my bp stays normal or goes up

tried showing them the research and they ignore it and won't look at it..... any advice on that?

HUGS

LISA

[roxie]

hmmm, idk reallly, there are a lot of dr's out there that don't want to listen. sadly you may have to look for another dr but i think that there is research that says bp doesn't always drop and just posted in the

"what's new" on this site was research by dr stewart that says the adult form doesn't always have lbp? if i remeber that correctly

i guess you should keep trying and praying that the right dr will come into your life

[flop]

Hi Lisa (and everyone else),

I'll have a go at posting links to pictures of acrocyanosis. If they don't work, either type the web address into your browser or go to google and do an image search for acrocyanosis. I did find a really good picture somewhere a few weeks ago but I can't find it again now.

www.ipej.org/0602/raj2.jpg

www.emedicine.com/ped/topic2860.htm

ok, fingers crossed,

Flop

PS - didn't work, so I've edited it to just show the web addresses.

[blsvlo]

thank you flop..... that is me.... thanks for your research

hugs>>>lisa