Calling all MS sufferers that have purpling of the legs/feet
- Boopieup
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Calling all MS sufferers that have purpling of the legs/feet
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.
- Boopieup
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OMG! I'm not the only one afterall.
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.
- AndrewKFletcher
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- Boopieup
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legs 'n' feet
http://boopieupsmsjourney.blogspot.com/
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
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oedema responds well to inclined therapy.
Andrew
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
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hmm
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.
http://boopieupsmsjourney.blogspot.com/
- Boopieup
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Guest
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.
http://boopieupsmsjourney.blogspot.com/
Cold feet!!
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.
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