Author Topic: Rubbery Legs- Difficulty/weakness walking  (Read 6868 times)

eyeamdry

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Rubbery Legs- Difficulty/weakness walking
« on: March 05, 2010, 09:25:38 PM »

I am getting more concerned about my muscle condition in my legs.  I've had numbness around my knees since before diagnosis.  I have one partial knee replacement and it seems that would not be unusual to have numbness.  I also have osteoarthritis in both knees.  For some time, I've had to stand in one spot for awhile after I get out of the car after a ride of 30 minutes or more.  Also if I have been sitting in the house, I get up and my legs are weak.

I've had this for some time and I  feel it's getting worse.  Today, i stayed in bed until 3 pm and my legs ached from above the knee down. I know I should use a cane, but this would be a shock for anyone seeing me.  I'm not worried about that as I have one and can use it.  I try and do a little exercise using my legs like walking a bit but it's hard as there is snow and ice all over around here. Can anyone tell me their experience with legs getting weak?  I am being set up with Cleveland Clinic, so I'll have some good opportunities to tell them there.  But, the info from this board if often better than the docs have.

Poochie

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #1 on: March 06, 2010, 11:24:17 AM »
Lucy,
I wish I knew what to tell you.  I have been going through this for quite a few years now and my neuro doesn't know what is causing it, except for the slow progression of the PN. 

Right now, I'm sitting here trying to get up enough courage to get up and go to the kitchen.  I spent the day yesterday running around with my daughter.  Today my legs are refusing to go where I want. 

I've just given up trying to find out the problem.  As long as the pain is manageable and I can do most of what I want, I just cope with it.  I also use my cane when out and about.  However, after hearing from several fellow suffers with this,  I have invested in a fore arm crutch.  Wow! what a difference in the comfort between the crutch and the cane.  At first I didn't understand why it could be so much different, but it becomes evident when my shoulder doesn't hurt after being out with it.  Definite plus. ;D

I hope you can find out why this is happening to you.  My numbness is worse from my hips to my knees.  At night laying down, it becomes total, from my hips to my toes. 

Let us know what your doctor says.  I would be interested in another opinion.  Thinking of seeing a different neuro, but don't really feel it would help.

Until you find out, please be careful.  Falling is the one thing, you don't need to do. :)

Hugs, Pooh   

navydad

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #2 on: March 06, 2010, 12:16:42 PM »
Run,, (if you can) to a differnt neuro if your not getting answers, I have about 5 of them,, I dont get a good answer from one of tehmI go to my other ones,, today the sensory stuff is really acting up,, hands are numb,, my feet and legs fel like ice cubes,, I just cant et them warm,, breaking out in that weird red dot rash on my hands and feet arent helping either,, had this right before the start of the new year,, dermatologist had no clue what it is,, my hands and feet will get those little red dots on them,, and eventually myhands and feet peel,, I dontknow whats going on

Jack

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #3 on: March 06, 2010, 05:38:39 PM »
I have been having the similar thing.  I feel like I've aged 20 yrs. over the past 5 months.  It's difficult to walk, stand from a sitting position, bend and in general just move. laying down to sleep is not an option any more because of pain.  I believe that the dryness is at it's worst also so there must be some connection there as well.  It's an all around feeling of illness that's awful.  Anyone else have this feeling like you're toxic?  I have Sjogren's, Fibro, Psoriatic arthritis, osteoarthritis and who knows what else.  Just recently I'm having what might be liver problems.  I'll see the gastro on Tues.  All I know is that this "ain't" fibromyalgia!  I live 4 flights up (no elevator) and it's time to move but the thought is overwhelming as is just about everything else lately.  This disease sure kicks.  Giving up isn't an option but sometimes it's difficult to keep positive.  I wish there was a support group in my area. 

Babs659

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #4 on: March 06, 2010, 07:47:09 PM »
I can really relate to your "overall feeling of illness."  I had that awful flu-like feeling for quite a few months before the meds kicked in.  I also had severely weak and rubbery legs and was light headed, too. :-\  I thought I was dying.
« Last Edit: March 06, 2010, 07:48:42 PM by Babs659 »

eyeamdry

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #5 on: March 06, 2010, 11:35:15 PM »
Reply to Jack:

It says you live in Ohio.  Check with your local hospital, rheumatologist to see if there is a support group for Fibro, rheumatoid arthritis etc.  Sjogrens is found less often and a fibro support group would welcome you I'm sure.  Can't hurt to find out.  I don't have a Sjs group in my town, but do have a fibro.  I have not joined it because just after sjs diagnosis, I had a cancer diagnosis and had lengthy treatment for that.  Lucy

Carolina

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #6 on: March 07, 2010, 09:39:16 AM »
The Nerve Conduction Velocity test  can tell if you have neurological damage from pSjS.   I have profound neuropathy in both legs, ataxia, right foot drop and numbness in both feet and ankles.  So far I haven't found a good MD of any kind here, at least not in neurology or rheumatology.  But we're moving to Raleigh soon, so I am hopeful.  Good luck.  
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Babs659

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #7 on: March 07, 2010, 11:28:36 AM »
My nerve conduction tests were borderline normal, which the rheumy interpreted as meaning my symptoms were from profound fatigue.

Prairie Gal

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #8 on: March 07, 2010, 04:53:53 PM »
Navydad, those "little red dots" are describe in an article on Vasculitis in the February issue of Moisture Seekers from the Sjogren's Syndrome Foundation.  It's a fairly long article and goes into the various ways Vasculitis can rear its ugly head.

Prairie gal
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irish

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #9 on: March 07, 2010, 11:34:03 PM »
Lucy, I am wondering if your muscle weakness in your legs could be made worse by the fact that you have had to lay around so much these past several years. I can't remember the exact numbers, etc., but if a person lays in bed only 2 weeks they lose an amazing amount of strength in their legs as the muscles atrophy from not being used.

Have you been to rehab and had them evaluate you? It may well be that some rehab would increase some of that muscle strength. Hopefully it will be this simple. Irish ;D

eyeamdry

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #10 on: March 08, 2010, 12:20:21 AM »
Could be, Irish.  But then, I remember it starting when I was still working and was about 8 years ago.  I'm going to be trying to put this and that 2+2=4 together soon and figure what the heck is going on.  I inow numbness and weakness for sure. 

stillsguy

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #11 on: March 08, 2010, 06:39:15 PM »
Eyeamdry

OA ain't fun, is there a heated swimming pool nearby u could use for exercise. It's painful but u need to keep those joints lubricated, which means use them. I find if i start slowly exercising  eventually it gets a lot better

wish u well

Bernice

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Re: Rubbery Legs- Difficulty/weakness walking
« Reply #12 on: March 08, 2010, 07:09:40 PM »
I just wonder if it's from poor circulation and lack of movement  for too long? I know if I lay for too long my body feel weak and I feel tired.