really better certain days?

[Fighter_B]

Hi all. I have been unable to walk or stand for more than a few minutes for the last 4 1/2 years for the most part. I have a gait disorder that causes severe shaking in my lower body that moves into my torso. It’s affected my whole life. Suddenly, in the last six weeks, I have been able to go for a walk for a mile and a half at a time. I’ve only done it four times now, but it’s a mind game because I wonder what that means for me. Am I suddenly better? I have new symptoms lately: my right leg goes numb in certain spots and suddenly my feet are twitching while sitting it lying down. Previously, my symptoms were while weight bearing. I still have back pain every day. But what does it mean that I can suddenly walk for 35 minutes, whereas I couldn’t walk at all before?

Do others have this issue? Where the majority of time it’s where you always are, and then, suddenly you can do a feat you never thought would be possible again? I understand that there would be good days and bad days, but this is bad days and suddenly an amazing day. Any help is appreciated. Thanks.

[Judiy]

can’t explain it but wanted you to know you’re not alone. I’ve had gait issues that came on 4 years ago. Suddenly couldn’t move legs while mid walking. Now Shaky legs and weak ( especially getting up from sitting ).think mine’s a neuro muscular thing going on. Can’t really walk on my own without an arm to hold and it’s an effort to move left leg especially. I too have had instances where suddenly I walked normally- only about 4 times but it reverted to the normal walking dead walk next time I tried. You just want to keep walking, don’t you? I have also found my hand has started spasming occasionally when I am using it, and legs twitch. Latest neuro physio is giving me core strength exercises that are starting to help with the balance. I wish you the best of luck, stay strong and enjoy your walks xxxxxx

[Fighter_B in reply to Judiy]

I’m glad the core exercises are helping. I definitely need to do more. Are you able to do hamstring bridges? I just can’t get my butt in the air! Lol. Thank you for sharing. It’s helpful to hear from others so we don’t feel alone. I went to far. My back was really bad last night and today so far. It’s hard not to keep pushing to see how it’ll go. Did you notice what was different for you those days? Less stress?

I think mine helped that I was in nature and not stopping. Stopping makes it kick in and so does sitting. I know I feel calmer being surrounded by nature. ☺️

[Judiy in reply to Fighter_B]

I have absolutely no idea what made those days different, I do notice if I’m walking ( attempting!) past people I get more anxious and that makes it even worse. Get bad back- lower spine . The bridges I can attempt but legs spasm as soon as engage the muscles!

[Fighter_B in reply to Judiy]

did you have an injury that started all this? My lower back is bad from an accident. The shaking and stuff started within weeks.

[Judiy in reply to Fighter_B]

no, literally no issues, had a bad back once but that went away, no tablets ur any other health issues, literally happened in a moment and life changed!

[Lecture]

As symptoms depends on many factor ( emotional, fatigue, stress, social support and so on) and are fluctuating, sometimes we feal better and sometimes worse, between hope et dispair. It's so difficult to deal with

[Fighter_B in reply to Lecture]

Hope and despair! That’s so true. Exactly how I feel. It’s so good to hear from others going through this so we’re not alone. Thank you for responding.

[Lecture in reply to Fighter_B]

The deal is to fight for life, not against these symptoms at the risk of exhaustion.

[Grow123]

I have also struggled with gait problems and what I call “dead leg.” The course on FNDcourage.org has changed my life for the better and I don’t struggle with this anymore. FNDcourage is a group of people just like us working to regulate our nervous systems. I hope that helps.