Why Do I Feel Great When My Legs Are Freezing?

[FarmerAmy]

It's winter here in Colorado, which means that I get brief periods of feeling really good. I will go for a walk and bundle up in a heavy coat, hat, mittens, and warm boots. But I make sure to just wear jeans--not warm layers on my legs. After 15 minutes or so my legs get freezing cold--almost numb. And magically my lightheadedness lifts! It feels so nice to be able to enjoy walking around outside and doing things like looking up at the sky without feeling like I am going to fall over! Unfortunately the effect only lasts for a few minutes once I get back indoors.

I know the blood vessels must be constricting in my legs when they cold. I thought this would raise my blood pressure and therefore make me feel better. Not so. I did an experiment today. I measured my blood pressure while I was nice and warm inside. Then I went outside and literally sat in the snow until my legs were good and frosty and I didn't feel lightheaded. I stayed outside while I measured my blood pressure. Here is my blood pressure before and after:

112/80 (warm and toasty inside)

108/78 (freezing cold outside)

I was very surprised that my blood pressure actually dropped a bit! Why was I not feeling lightheaded??? Maybe my constricted leg blood vessels were holding less of my blood volume and shifting more of it to my head--without increasing my blood pressure. I was thinking that I need to get my blood pressure higher somehow in order to decrease the lightheadedness. But now it looks like this is not true.

I noticed a similar thing over the summer. When I went to the pool I also felt great! I know my body temperature dropped while I was in the water. It was really nice to be able to swim a little.

I am asking all these questions in the hopes of finding some symptom relief. If I can figure out what changes when my legs are freezing, maybe I can recreate that somehow and find relief more often. It sounds unpleasant, but I am thinking of wrapping ice packs around my legs and seeing if that does much. I also ordered some new compression stockings. I think my old ones have stretched out and are not as effective.

Anyway, thanks for helping me brainstorm!!

Amy

[FarmerAmy]

I'm still thinking about this. I'm baffled. I know one of the problems with POTS is that the blood vessels in your legs don't constrict properly when you are upright. But my leg vessels seem to constrict just fine when my legs are freezing. I know it's the vessels on the surface that constrict due to cold. Are the same vessels supposed to constrict when you are upright? Or maybe interior vessels constrict in that case??

I tried Midodrine last year and I did not get much benefit. I can't figure out why cold is so effective in relieving my lightheadedness. Do other people get as much relief as I do from having cold legs?

[Katybug]

Hi Amy. I think your assumption that its is vasoconstriction in your legs is probably right. If the rest of you isn't vasoconstricted from the cold I'm thinking you may not see a difference in your BP. I think it is just not allowing pooling in your legs. Additionally, you mentioned you go out and walk. The muscle contraction from walking actively pumps blood out of your legs and back to your torso so maybe its that you can tolerate walking without the heat and it is the walking and not the cold by itself that makes you feel better. When I feel well enough to walk my dog, I usually feel better while we're walking (not so much if she wants to stop and sniff too long) but when I get back in the house and my movement is reduced, I can feel the blood literally draining back into my legs and away from the places I need it.

[FarmerAmy]

Thanks for the feedback, Katybug. Yes, I generally have to keep moving if I'm on a walk, too. But, amazingly, I can stand still in one place if my legs are freezing!

I feel like I'm just shooting in the dark when I try things. I would love to have some better understanding of what is going on so that I have some direction when I try things.

[Katybug]

We're just gonna have to get you some refrigerated boots then! I thinks its gotta be the vasoconstriction in your legs if you can stand still when they are cold.

[spinner]

How do you feel with the swimming? That takes the weight gravity out of the equation.

Also, any changes after a warm bath?

[FarmerAmy]

Spinner, I feel really good when I am in the pool (or ocean). I think it is a combination of cold temperature, pressure from being underwater, and reducing the effect of gravity.

There was a time last year when I went to the local pool. I got into the hot tub and within a few minutes I felt like all the blood had drained out of my head. I then got into the pool. There was a wheelchair ramp into the pool and as I walked down the ramp I could immediately feel the blood coming back into my head. I felt so much better before I even got up to knee-deep in the pool.

I feel pretty terrible after a warm bath. I feel ok while I am lying down in the bath, but I feel very lightheaded the moment I sit up.

[peregrine]

Sounds like pooling to me too. Before the clonidine I was always warm enough to only have stockings on my legs, even in the winter - now I'm more even in my temperature tolerance, at least in the winter (I get cold! it's kind of unfamiliar now). Regarding blood pressure - when mine is low I feel bad, but I can also feel very close to passing out - my 2/3-3/3 on the 0-3 presyncope scale - and have a normal blood pressure. It appears to mostly depend on *where* the blood is, which doesn't seem to have much to do with the blood pressure in your arm at the elbow or wrist, at least not in me.

(edited - oh, also, pre-clonidine I really loved being outside in the cold - I felt the best that way. probably the lack of pooling)

[FarmerAmy]

Peregrine,

I definitely think I get blood pooling in my legs. If I stand up for a bit, I get blue splotches on my legs. My legs also become achy quickly.

I just got a new pair of 30-40 mmHg compression stockings, but they aren't doing much to help. I wonder if anybody has experience with more compression???

[corina]

Amy, I've been wearing compression hose which worked for me. I also have an abdominal binder to use when necessary (used to wear it every day with the hose). Now I'm on octreotide I don't need them on a daily base, but before they were my best friends!

[FarmerAmy]

Alright, the idea of an abdominal binder sounds terrible to me, but I think I will give it shot! I wear thigh-high compression stockings because I can't bear wearing full length stockings. But maybe I will be able to deal with the abdominal binder. Thanks Corina!