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1523516 tn?1330044257

Muscles get weaker the more I use them. Anyone relate?

I've noticed the more I use my muscles, the weaker I get.  In the mornings I'm stiff and then it seems to get a bit better as I move around.  But then after that short period of being fairly limber, the more I use my muscles I just get weaker.  I could kneel down to talk to a child (I teach) and when I stand up the muscle in my left leg especially, is so weak like it's rubber.  It's almost a painful stiffness/weakness. I could start blow drying my hair and after a minute or two my left arm is so weak I can't hold it up anymore.

Anyone else get like this?  On some days it feels like it takes all of my strength just to walk through the house ( I have a small home) and my left leg will get so weak it will buckle on me.

Thanks ahead of time for your input.  I would love to hear how your muscles affect you.
Blessings
Stacie
42 Responses
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987762 tn?1671273328
COMMUNITY LEADER
Hi Annie and welcome to our little MS community,

Community Leaders try to check all new responses to the old posts that come back up :D

If your doc is a general doc it's possible he's not the right doc to help you,  what you believe the problem to be is medically 'suggestive' of reconditioning, associated with a pre-existing medical issue etc etc.....Your PT assessment next week will probably really help nut down what the problem is and point towards potential diagnosis's...    

Cheers.......JJ

btw richarme has not posted since 2013
Helpful - 0
Avatar universal
I see that these posts are several years old so I don't now if anyone checks them. However, when I read your comments I said "that's me" and felt a sense of relief that I wasn't losing my mind.  My doc keeps referring to my pain, which I don't have. Instead it just feels as if one day my left leg is going to stop working.  Walking is so labored and difficult and I can't ever seem to judge how far I can go.  I am starting PT next week but all the doc can say is that it "might" help. I am wondering how you made out and if you have a diagnosis / prognosis.
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987762 tn?1671273328
COMMUNITY LEADER
Hi there, the poster Eric12 has not posted since 2012......Fampyra is available in Europe, including the UK, for people with MS who have problems with walking. It is available in the USA under the name ‘Ampyra’......I hope this helps

Cheers.....JJ
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Avatar universal
do you mean Fampyra???
Cindy
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Avatar universal
Are you talking about Fampyra?
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15038840 tn?1438115670
Hi Kyle,
My neurologist did touch on the topic of heat and recommended cooling towels which I use.  I haven't noticed an improvement but keep using them.
It's just so odd.  Something as simple as making a sandwich and I start to crumple.  Not over exerted, not over heated, just weak... randomly.  
I also spoke with my neuro, primary and physical therapist about pushing myself and all had the same response, that pushing myself when weak wasn't a bad thing.  So... I push.  Sometimes pushing the vacuum around while on my hands and knees, pulling clothes out of the dryer and folding them on my knees, blow drying my hair while on my knees.  
I should have been better mentally and emotionally prepared for changes.  I was an expert in my MS for over 20 years and was really jolted by these changes as they were uncharacteristic and new for me.
Best,
Jody
Helpful - 0
1831849 tn?1383228392
My weakness is in my legs and it is directly related to core temperature. If my core temp remains down my legs are OK. The minute my temp starts to tick up, my legs start to go to s*it. If I sit and cool down, my legs start to behave themselves.

When I was first dx'd I asked my doc If overdoing it would hasten the progression of my MS. He said no. He told me that my MS would make recvery time much longer. I wonder if this is similar to your day after big activity drop off.

Kyle
Helpful - 0
15038840 tn?1438115670
Hi JJ!
Thank you!  This rapid onset weakness with rapid recovery (10-30 minutes) is new for me.  It's frustrating and scary.  I was diagnosed with MS at 24 and am now 45 and 2013 was the first "crumpling" I experienced.   In the past 2 years since it started I've desperately sought answers and to find a schedule, if you will, for triggers.  There seems to be no consistency to it.
One day I can do 20 mins on recumbent bike, 10 mins on treadmill, go grocery shopping and the next day something as simple as walking to the mailbox has me crumpling to the ground unable to move.  The past 2 years have been a roller coaster of frustration.
Thank you for the welcome.  I will see if I can figure out the "ask a question" tip.  :)
Jody
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi Jody and welcome to our little MS community,

You are definitely not alone.........the more you do, the harder you push your self the weaker you will get with MS, the key is finding your balance and understanding just how much you can do 'before' you run out of umpf :D and you start crumbling.

Why don't you introduce your self to the community, which you can do by going to the top of your screen and clicking on the green 'ask a question' box

Cheers......JJ
Helpful - 0
15038840 tn?1438115670
Hello Everyone!
This is my first time here.  I was diagnosed with MS in 1994.  I am so happy to find this forum!  I have been desperately searching for answers to explain the weakness described here.  The more I do, the harder I try, the weaker I get. :(
This is the first time since the onset of this weakness in 2013 that I haven't felt alone.
I posted on Reddit last year asking anyone if they experienced what I call "crumpling."  I found no one.  I thought I was going crazy. I could not, until now, find anyone else who experienced what I was experiencing.  
I see my neurologist in August and will definitely ask about nerve conductivity after reading about here.
Best to all,
Jody
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Avatar universal
Ok...I  have MS and what this lady talked about sounds a lot like that...It takes a long time to get a DZ, but one has to hang in there...
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Avatar universal
After years of searching for answers, I finally found this site and feel like I'm not alone.  Almost 7 years ago, I had 4 stents in my heart, only 47 at the time, and almost immediately I became so weak that my husband pushed me in a wheel chair or helped me when I got too weak to walk.  I have thought it was the statin drug that damaged my muscles but all the tests have come back normal.  As the years have continued, I continue to get weaker and weaker.  Doesn't help that my blood pressure is 90/54 I found out.  I can not exercise at all, run, play with my grand kids much, or do much that would use my muscles more than walking.  If I do, I hurt so bad, especially at night and can't sleep.  My whole body hurts and it feels like every muscle aches like the flu.  I move very slow and need to just do nothing the day or two after.  As time goes on, I am getting worse and am terrified that I will end up in a wheel chair.  I am lucky that I have a wonderful understanding husband.  I am afraid to have tests as I have heard insurance is really bad once a person is diagnosed if it is MS.
MANY years ago I had some type of brain scan and they said I had what could be signs of MS but nothing more ws ever done.  My cousin has MS but no one else in our family.
It's very reassuring to know I am not the only one with the muscle weakness and pain.  It makes it easier to deal with.  
Thank you all for your posts.

Lisa
Helpful - 0
1831849 tn?1383228392
Hi Denis- This is a rather old thread and I haven't seen Stacie around in a while. Maybe you'd like to Post A Question and introduce yourself. We're a pretty friendly group :-)

Kyle
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Avatar universal
thanks for your question, i was beginning to think I'm imagining all of this! Every time I mention this weakness, I'm told that I need to exercise more; the more I do, the weaker and sicker I feel!
thanks, Denis
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Avatar universal
I really didn't understand what was going on. One day I'm fine the next I was tired just doing light work. The fatigue in legs is worrying me , I'm a fire fighter and might have to put medical papers in soon. Used walking stick today to feed horses. To be honest I'm scared.  I will check site regularly to see how others are doing and coping.
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Avatar universal
Hi. A caution here--- Normal evoked potentials do NOT mean you don't have MS. Where do doctors get this stuff? If nerves affecting vision and hearing have not been subjected to demyelination, your tests will be normal. If they have (it's a crapshoot), they won't.

There are specific criteria for diagnosing MS, known as the McDonald criteria, and none of them mention eyes or ears. If you are not being seen by a true MS specialist, you should be. And get more info about the two areas of the brain that are 'odd.' Your doctor is not confidence-inspiring.

ess

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Avatar universal
Wow, I'm suddenly not feeling so alone!  I have had right sided weakness for 5 mo thinking it was due to the herniated cervical disc that needs to be fused.  Then last month I woke up fully paralyzed in all limbs.  That lasted for 18 days, and little by littles improved to where I could care for myself again.  

Spinal tap & labs are normal but two areas of the brain are odd.  Anyway, I'm having the hearing & vision evoked potential tests this week to definitively diagnosed with MS.  if its normal, the Dr said its not MS.  I asked how can a 40 yr old wake up paralyzed?  If I lay in one position, my limbs will no longer work. I can feel it if you touch them, but I cannot make the muscles move.  My hubby will reposition them, and I can then move some of the muscles.  It's weird!  And yes, the more I use my muscles, the weaker I get.  It's frustrating!  I've been stuck in bed for 7 weeks weeks and fed up!  Thanks for the post!!
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Avatar universal
Well, that depends so much on the individual. There are things to try, though. Ampyra helps a lot of people. Anything that relieves symptoms so that the person functions better is bound to produce a more energized feeling, and in the practical world, will let us accomplish more.

Even if the seemingly weak muscles can't be strengthened, sometimes the surrounding muscles can be trained to take over some of the work. Otherwise they too get exhausted and we feel wiped out in general. That's why being as physically fit as possible is so helpful in MS.

Not so easy, and I'm a prime example of that, but I'm working on improving. It's never going to be like it was, but if I can achieve more endurance I can maximize the abilities I do have and gain a more functional life. Some people's illness has progressed beyond this point but I don't think mine has yet.

I see my neuro in a couple of weeks and plan to ask for Amypyra.

ess
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Avatar universal
Is there any solution for this problem. The above describes exactly how I feel.
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60995 tn?1359603014
I am soooo glad to see that some one has the same problem as I.
My family doesn't understand what I'm going through ! They think I am just wanting attentiom  Not so I always done all that a women does for her family and more You have said what I have felt for years As much as it hurt and no matter how week my legs got I still walked !
But now I can't do it anymore I get so I feel like I can't move my leg is getting weaker .Still trying to find a Dr. that will help me God knows I have many of them God bless you for saying what I have been trying to describe my pain and weekness
Please God help us all find somthing for this pain and weekness So we can go on living a normal life
Helpful - 0
Avatar universal
It is so good to hear that others are having this problem and I'm not the only one.  I don't mean, I'm glad others are having this problem too, but that it is more common than I personally thought.  I go to my Neuro today to get the results of all the blood tests and MRI.  He was trying to narrow the results.  He has been considering MS for a while, which turned out to be Lyme Disease, and now we will see.  Thank you for your posts.

God be with each of you.
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4003901 tn?1349011493
This is exactly the question I was looking for.  I can't do the least little things anymore without wearing out,  Brushing my teeth, making cookies or any cooking, folding laundry.  It seems that anything I have to do with my arms does me in and kind of raises my heart rate a little.  I also have Graves Disease and some other autoimmune diseases.  Thanks for this post.
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Avatar universal
my legs shake a lot when im sitting or when im driving and have to push on the brake for a while
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1760800 tn?1406753451
I am on AMpyra and the difference is amazing -  I too am not completely better but the difference is there and I can tell if I don't take it!
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