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Posted 3/3/2008 10:01 PM (GMT 0)

I've been away for awhile dealing with lots of stuff. I have a problem and need to know if anyone else feels this way. I am really just learning about this disease and so I'm having trouble telling what is MS and what isn't.

Anyway, my problem is this: my legs feel like they are made of cement! The other day I was out shopping with my spouse and I said, "this walking just kills me! I have all I can do to move my legs." The response was, "well that's why you have to keep walking." I felt like I wasn't understood. Just walking around the house is difficult. My legs give out and I have to catch myself. My doctor is ordering me a new motorized chair but I have the feeling that my family is going to say the same thing, "if you don't keep walking then you will stop being able to use your legs." Are they right? Am I just being a big "baby?"

I should let you know that I was diagnosed firmly about a year and a half ago but, my doctor said that because of my MRI, he suspects I have been misdiagnosed for many years.

Posted 3/3/2008 10:19 PM (GMT 0)

Unfortunately, failing legs are often a first sign of something going wrong, neurologically, and indeed, having legs that "feel like cement" are pretty common.  Walking more, or exercising more, won't change the underlying condition -- the nerve impulses from your brain to your legs aren't getting through (the myelin is destroyed, or at least damaged, and the signals are having to re-route themselves).  Walking more will only tire you more.  It won't damage anything..but you will get more tired.

Obviously your doctor thinks you are impaired enough that he is ordering a motorized chair for you, so it's not like you're making it up, or baing a baby!  I'm sorry your husband (or family) is being so unsupportive.  They don't understand what MS is, apparently, and think that you're "out of shape, and if you just walk you'll get stronger." That WON'T happen. It's not that your muscles are "out of shape" because you don't exercise..they're "out of shape" because they're not getting the proper signals from the brain.

You'll just have to tell them they don't understand, and enjoy your new chair.  You might investigate the power chairs that are available in many stores, too -- they're slow and cumbersome, but at least you'd be able to get around more easily and do your shopping.

Posted 3/3/2008 10:29 PM (GMT 0)
Thank you so much, uppity! I really was beginning to think it was just me. God Bless!

Posted 3/10/2008 2:59 AM (GMT 0)
I have to agree with uppity on this one....Heavy legs week muscles no the "normals" dont understand.....If only they could walk in our shoes for an hour...They would get a crisp picture of what we go through...Use your chair and enjoy what it can give you....Some independence!Good luck to you.....pokey79
Posted 3/11/2008 2:20 AM (GMT 0)
I gotta admit Uppity's response here has been nagging me since I read it and it's all about coming to understand what's really happening... I felt like HL, folks kept saying, exercise more, walk more, be more active, remember all you used to do (boy do I and I cry to think it's a thing of the past!) and then with the hypothyroid and weight gain, I got those "looks" like, lose weight you'll feel better, you're getting older, etc etc... and then they figured out the pituitary wasn't working quite right either so got that in order and I lost a bunch of weight! Wow! But the legs still don't work so good and I walk like my mom used to (she passed away in 2004 at 75 yrs old- lung cancer).

So Uppity, thanks for the explanation cos I'm still trying to wrap my brain around that part the most... it's so darned hard "looking fine" but not feeling fine.

Thanks!

Posted 3/12/2008 5:20 AM (GMT 0)
I, by no means know what I am talking about, but since diagnosed with MS Feb. 1, 2000, I have experienced said "cement feet" too many times to count. Once to the point that I really thought I would have to call a neighbor to pick me, my baby and his stroller up for I knew that I couldn't walk another step.

The heat has always been a very big factor on me. In the instance mentioned above, I just sat down on the sidewalk and played with my little guy until I "cooled down". I had just enough energy to finish walking very slowly home and to call my husband to pickup dinner on his way home.

I wasn't clear if temperature could be a factor in your case.

Wishing everyone good luck, many prayers and too much happiness!!!!!
~V
Posted 3/15/2008 2:10 AM (GMT 0)
Thanks everyone for your encouragement! Yes, it is very difficult to explain and many times I have thought, "boy if you could feel this you would understand!" I certainly don't want anyone to go through this! Thanks again and HAPPY WHEELING!
Posted 3/15/2008 5:14 PM (GMT 0)
Saturday noon

 

Hello again, Hummingbird:

 

 I have always maintainerd that NO ONE can understand the depths of our fatigue unless you are another  MS
 patient.  Right everyone?

 

Now it took me awhile  after being DX'ed (20 years ago), but there is help for us.  At first I had a tough time accepting help, but  now....

 

Any shopping mall has wheelchairs/powerchairs.

 

We were kinds crapped on with this whole MS thing.  We deserve a break.

 

If your hubby has issues with you using aid, give him  choice.

 

Get me some aid or leave me home!!!!

 

All the very best.  John

 

 

While I agree that exercise IS important, you need immediate help.

Posted 3/18/2008 11:51 PM (GMT 0)
Dear Numerously Blessed, why do you take Provigil? How does this help you? Does the Lexapro make you tired or sleepy?How do you respond to the Trysabi? Were you on something before that? Thanks.............Just- 1Mom.
Posted 3/19/2008 1:26 AM (GMT 0)
John, I've been pondering your post since I saw it posted and it's something I gotta accept first... my hubby's got the "think positive" thing going right now and I keep telling him I'm POSITIVE I know how I feel! :) But then on the other hand, he's all too ready to wheelchair me at the theme parks etc... he's already planning our trip in a few weeks... and it's gonna be very different to do it in a wheelchair at some point... I'm usually good for a few hours and then it's no energy for the afternoon.

But thank you for your tips and pointers... and everyone else for the confirmation that it's not how we look or more exercise or anything we can "improve" to be better... now for the acceptance.

Posted 3/19/2008 10:26 AM (GMT 0)

D'awesome said...
John, I've been pondering your post since I saw it posted and it's something I gotta accept first... my hubby's got the "think positive" thing going right now and I keep telling him I'm POSITIVE I know how I feel! :) But then on the other hand, he's all too ready to wheelchair me at the theme parks etc... he's already planning our trip in a few weeks... and it's gonna be very different to do it in a wheelchair at some point... I'm usually good for a few hours and then it's no energy for the afternoon.

But thank you for your tips and pointers... and everyone else for the confirmation that it's not how we look or more exercise or anything we can "improve" to be better... now for the acceptance.

So, if he's willing to push your wheelchair around, LET him. Sounds like he's eager to have you be with him, and willing to help make that happen -- a GOOD thing.  There are scooters available at those theme parks, too (for a fee). That might give you even more flexibility.  You should not be ashamed or embarrassed to ask for one, use it, and enjoy yourself..and your husband's company.
Posted 3/20/2008 3:18 AM (GMT 0)
I know, thank you, Uppity, really I know this but part of me says my legs still move I should keep going... so I'm adjusting and yes, he's more than willing.... and yes, he wants me with him and yes, I really appreciate that too... I've just gotta adjust to the whole wheelchair thought, that's all. I've always been very strong and independent and capable and this is kinda knocking me off my feet (literally). I think once we do it one time, I'll be good with doing it regularly and feel the benefit of not being worn out. I do appreciate the feedback though, it's just a personal adjustment for me. A really big one.
Posted 3/20/2008 1:39 PM (GMT 0)

Deb,

You are describing the most difficult part of MS.  That is the adjustment to a new you with different abilities.  It does not matter what you were before this disease - this disease changes you and that is horrible.  Please know that you do get past that adjustment period.  I obssessed for a long time about all the new things I had to do to stay as "able" as I can be.  I have changed everything.  There are no more late nights.  I have to eat extremely well with copious amount of fiber and water plus a few helpful supplements.  I have to stretch and keep spastic muscles in line.  I have to take meds to treat the progrssion and I have to take meds to treat symptoms.   I ration my energy to get through each day.  I still work but I spend each evening and weekend recharging my batteries. I have lost "normal".  I resented this so much at first.  Soon, it become ok to not have "normal" anymore.  You learn to live with an everchanging normal - that becomes your normal. 

Please know that as bad as you feel right now, we have all been there.  It is really rough.  I have just recently left that place you are in now.  But things do get better.  You will learn to appreciate your body again.  You will marvel at the courage it takes to find joy in this life even if others don't see it.  We know of your courage!!! So hang in there - your feelings are all normal and you are doing just fine. 

Love and prayers,

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