Calling all MS sufferers that have purpling of the legs/feet

[Boopieup]

I can’t be the only one on the planet with MS that has a problem in the legs and feet. I have many other symptoms, but I have not found one other person with the same leg and feet problems as I have.

Here’s what I DON’T have: Varicose veins, edema, or any other problem in the legs and feet other than below.

Here’s what I DO have: Legs (from the knees down) and feet that turn purple and become stiff and painful when not elevated. Even when elevated if the toe is squeezed the end immediately turns a dark purple. They (legs and feet) are cold to the touch 80% of the time. My brain goes into freak-out mode when the feet are on the ground too long—more than a minute. I do not wear compression hose because they make it worse by holding the blood at my ankles when I elevate them again. I do not walk because they are too weak. When my feet are on the floor the rest of me gets weak. My feet are both numb to 90% and so are my legs. My ankles roll under any kind if weight even when I’m sitting on the bed. If I eat too much fatty stuff like chicken wings, cottage cheese, or even 1% lowfat milk that makes the pain a lot worse even when elevated. When I fall on the floor I am too weak in the legs to get up alone. Yesterday, I spent 3 hours getting familiar with the tile floor.

I spend 99% of the time in bed because of this. It has only become this bad within the last year. Last year I was walking with a walker. I’m 36, female, have a 36” inseam, am on no medications because I can’t tolerate any of them, and used to ride horses up to 4 years ago.

I am trying to find others with the same leg and feet problems as I have that can share ideas with me on how they deal with it or make it any better. I also need to know that I am not the only one because of right now that’s what I know.

[robbie]

I have the same thing Boopleup , my feet are purple and ice cold most of the time. They feel so cold it's painful, my neuro says it's just from lack of movement and tells me to keep them elevated which isn't much help. once and a while they get warm along with my calves and it just feels amazing.

[Boopieup]

Not that it's a good thing.

Hello robbie,
Thank you for that reply.

How high up do you elevate your feet? Does the color ever change to normal when elevated to a certain height? What was the timeframe and how did it start with your legs/ffet? Where did it start? What, if anything, do you do to help your legs not hurt so bad if anything does help?

I'm at the point to where I can't be in a wheelchair without the feet raised up to at least hip height.

My leg/feet color does change to normal when elevated in bed only. I have one of those latex mattresses with an electropedic frame that both top and bottom go up and down. I do leg, feet, and ankle exercises when in bed that keep them from getting stiff and that keeps the pain down a little. Standing at the side of the bed for 30 seconds every 2 hours helps with the pain too.

I was plenty active when this leg and foot thing started, so it wasn't inactivity for me.

My surgeon said that I needed to wear compression hose and walk or lose the feet. What? I guess he's into scare tactics.

Well thank you again robbie.

[robbie]

When i am on the couch i put my feet on the wheelchair but i get little help. when i go to bed they are always hurting but by the time i get up they are feeling better and for a short time they stay that way. I take tylenol 3's for the general pain(legs and feet). It dulls the pain a bit but it's always there, just more use to it than anything.Not sure of a solution but if you find one let me know.

[AndrewKFletcher]

Try the opposite approach and tilt bed by raising 4 inches to begin with at the head end and monitor feet over 4 weeks.

[Boopieup]

Ya know, Andrew, I'd try it, but now my toes swell if they are down a little. I'd try it if I was better off. At this point I need to do what feels best and not experiment. Six months ago I would have, but now it is a quality of life thing.

[Dovechick]

Boopieup, My daughter Ella who has MS, gets the blue leg syndrome, she also gets the ice cold feet thing when she is in the midst of a relapse. Other times her feet might go blue but without the painful cold sensation.

Both conditions are improved somewhat by reducing any constriction of the legs and feet (no elasticated socks, shoes or bending/pressing of the knees). What she does is: wear soft loose trousers, loose woolen socks, loose leggings over her calves and places a heating pad under her feet. When this is very bad, loosely wrapping a duvet arount the legs and feet seems to help too.

No one has been able to explain this...
Michele

[AndrewKFletcher]

You might be surprised to learn that tilting the bed in the opposite direction to recomendations by the medical professiuon and elevating at the head end by 15 cm, or 6-7 inches should over several weeks dramatically reduce the swelling and improve your circulation.

oedema responds well to inclined therapy.

Andrew

[Guest]

Hello Boopieup.

I'm glad that you mentioned this symptom.

My hands / palms and fingers / turn dark purple and they are icy cold. At first I was told to have scleroderma. /my ANA test is 1:1280- rheumatoid factor/. But since it’s purple even when I’m in a warm room, it was later ruled out. My current neurologist was not concerned about this so my rheumatologist suggested to see a different one. I’ll keep you informed after my appointment.

I guess it’s easier to manage purple hands than feet. I constantly do something with my hands. And yes, even one minute of not using them brings out the purple color and a pressure is building up from the inside and they feel puffy. Very strange symptom.

[Boopieup]

Thanks Guest & DoveChick
For the posts.
Guest, keep me posted on your next visit.
The only clothes I wear are loose socks and a t-shirt, so with me it's not a constriction thing. My situation has gotten worse. My fingers and now above the knees turn purple. It's a splotchy purple and not a 100% purple.

Andrew,
I will not try anything without proof. "May", "should", "could" kind of words don't hold water in my book. I'm not a good guinea pig. It's at the point where people tell me that I should try something and I respond with "NO and you aren't me so you can't possibly know what I'm going through and why I say NO".
Do you have any contacts that are MSers that are wheelchair bound that have done the bed incline thing that I could email to?
Please PM me if you do.

I wrote a really lengthy post a minute ago and it didn't post, so this one is very summerized.

[Guest]

It's a splotchy purple and not a 100% purple.

That sounds exactly right!

[Boopieup]

There has to be a reason for this. Since there is more than one person with this problem, I hope these doctors attempt to figure it out and not just slap a name on it. What happened? What's going on right now? Yes, we know we have MS but not all MSers have this problem, so what's going on Doc?

I'm going to ask/tell my GP the next time I see him to see what he can do to get this figured out.

[rain57]

I've had the same problem with my feet & ankles for years.
Keeping them elevated & wrapped in a blanket is the only relief I get.
My Neuro says it lack of circulation & blood flowing back upward.

It's not as severe during warmer weather when the air & flooring
is warm..even tho I don't walk too much.

Having purple/blue/white feet isn't so attractive...ugh!!

I have difficulty tolerating Rxs..so I rely mostly on Advil & a heating
pad for my feet.

[kiara]

Hi, I also suffer from purple & cold feet. If I elevate it gets a little better. My doctor said it was my autonaumic? system dysfunctioning. I guess the blood isn't pumping up as it should. I guess there are a few more of us out there suffering from this. Take care.

[Just_Me]

Boopie, it sounds like its gotten worse in a month. I'd definately contact your doctor again about it.