Legs giving out

[Klorda]

I was diagnosed with AMN in 2017. I generally suffer from nerve pain in my legs and feet. This week, however, my left leg has "given out" 3 different times. Is this the progression of the disease? Can anything be done? How do others on this website handle this?

[Magnolia209]

Hi Klorda, this is how it progressed for me. My legs started giving out and I’d fall. Luckily never hurt myself. I started out with a cane, then rollator and now use an electric wheelchair most of the time. I can still use a rollator in the house but not for very long. It’s just too hard to stand for any length of time and becomes too painful. I was diagnosed in 2008 so I have a few years on you. I had a total right hip replacement in 2014 as the pain was severe and I was always falling. They found arthritis and a cyst so all was removed and that pain is totally gone. I’m 66 and it’s just progressive but try to remain active if you can.

[Klorda in reply to Magnolia209]

Thank you! I am still pretty much ambulatory and I go to the gym every day. My fear is being wheelchair-bound but I guess there are others out there a lot worse off than me.

[jolocny Volunteer]

Hello! I've had the same problem with my legs giving out. Actually, I'd be standing one second and on the floor the next. I haven't had these problems in the last year - I'm just counting my blessings! I was diagnosed about 15 years ago and went through the usual equipment - cane to forearm crutches to manual wheelchair and now manual WC at home, power WC when out of the house.

Prior to this year I had a couple years when I just never knew when I'd go down. Quite disheartening! We bought an IndeeLift to help get me up. This is a neat little machine with a seat to slide onto from the floor and a remote to lift me to seat height. Of course, it doesn't help if you're by yourself.

I have not kept up with PT or exercising as I should. I do continually try to stand and balance when I can throughout the day. I have more trouble with my shoulders and hands than my legs. These I HAVE to exercise to keep transferring and helping to pull me up.

Wishing you the best and hoping this stops!

[mariagno]

Absolutely part of the progression. If you are taking any muscle relaxants, see if you can tolerate a smaller dose. Spasticity is needed to stand.

I also noticed that cold weather or any cuts or bruises increased the legs giving out. It was like any pain overrides control.

Then there are things that can improve control like 4-AP or Ampyra and Provigil.

Keeping moving helps a lot.

But I reached the point where falling was resulting in broken ankles, a hip, and vertebrae in my back. Some surgeries to repair some of the fractures.

This was after 15 years of using a cane, arm crutches, and walkers.

I have been using a manual TiLite custom wheelchair for 8 years. Actually, I have 2. A rigid one for around the house and a folding one for the car. I still drive and go places by myself. I enjoy it tremendously. I have rejected any powered chair until I can no longer push myself.

The manual chair keeps me in shape. It also speeds up my travels. Walking was slow and risky. A manual wheelchair and I can cross a mall in under 5 minutes and get some exercise. My triceps and biceps have never been better.

We also have lake property with hills that I traverse and when it is steep the sidewalks have handrails so I can pull myself uphill. We have a drop of 20' from the street 300' away to the boat and I can go down or up without help.

The right wheelchair is great.

As for short term help to keep walking, see if you can find a comfortable knee brace that might help things stay in place.

Also, find a way to do weighted leg extensions. Either at the gym or invest in a weight vest and do mini squats.

The quad muscles are what get us and keep us standing. You want to make them as strong as safely possible.

I was diagnosed in 1995. Got my first chair in 2012.

I am 58 years old. In the best shape, I have been in since I was in my 20's

I had real problems getting over vanity issues of anything like a cane, walker, or wheelchair. This was until I realized people saw it as a plus that I was fighting disease by staying active.

Also, women are oddly attracted to the wheelchair and often like to ask questions. My wife of 31 years finds that to be slightly annoying.

[Klorda in reply to mariagno]

Wow! Thanks for the uplifting response. I do find that cold weather does increase my pain and leg issues. I go to the gym and do the weight machines to keep my legs and arms as strong as I can. I have been a lifelong gym rat so hopefully, this has helped me.

[monkeybus]

Legs giving out seems par for the course.

Me, it first started when I was drunk. Just momentarily, I'd go down. That was when I was 20-something.

On and on. I am now 49, It usually happens when I am in the house and not concentrating on my walking. One minute I am up, next, I am down.

4-Aminopyridine works for me. Like others have said, go easy on the muscle relaxants, but 4-AP helps the signals get down to the muscles in my legs.

Regular exercise/stretching goes without saying.

[Hillary]

Not just reducing dosage of muscle relaxants. I found trying different ones helpful. As in everything to do with this awful condition, we are not all the same and react differently to different drugs

[quilling]

I am a female who started dropping down in my 20s I realize I began to lock my knees. Actually my husband told me how I was compensating. Then toe drop led me to trip and fall. Back when I'd just get up and keep going. Forearm crutch, AFOs which led to hand, elbow shoulder pain from leaning too much on them. Wheelchair for outings. Fall and broken hip 3 years ago led me back to rollator and wheelchair. I can't use wheelchair by myself as shoulder, hand and elbow just don't allow it. Homebound now and struggling but still do my best every day. Some days i just can't and take the day off to rejuvinate and that I have learned is OK.

[COwithAMN Administrator AMN EASIER Volunteer in reply to quilling]

Well done, just for trying so hard. You have been having a tough time. Your comment about taking the day off sometimes is important because you point out how we also deal with the psychology of the situation. Forgiving yourself is OK.

I am sure your husband helps a lot as well. Let's look forward to better weather and a virus-free world when we can smile!

[quilling in reply to COwithAMN]

Thank you. I have been called stubborn. I like to call it independent. My husband has to dance. I know it’s hard for him to watch me but he knows I want to do it myself. The other night when my head wouldn’t stop shaking so I could eat dinner he offered to hold it still for me. I said no. I don’t do well accepting help unless it’s something I just can’t do anymore.

[B2-555 in reply to quilling]

I’m 72. Trouble walking ... broke my hip twice last year ... big setback