Do those with movement disorder get the feeling that your legs are at the end of their endurance, just by getting up and moving around.
It's hard to describe. It's like the feeling you might get in the gym at the end of doing a set of exercises. When you have to do 2 more and your legs want to stop. It doesn't hurt, it's like there is no energy in them. But just my legs. And it's from just getting up and going into another room etc. Nothing strenuous.
Hey there.... oh my you just described my legs every morning exactly .... I recently bought a memory foam Leg rest pillow from Lidl /Aldi I put it under my legs when wake or on the sofa it helps a bit ....then the daily bath with Epsom salts / magnesium flakes ..then yoga stretches etc etc...
.. I dream one day I’ll wake up and feel like I used to 4 years ago, but meanwhile we get up and do our best eh ....take care
Have you had leg problems for that long how long has the longest been and howd it start?
Hi
Oh yes I know that feeling well! Sometimes in my legs, sometimes in my arms and has no business being there! Not fun! I had to give up mashing potatoes the other day because my arm kind of went into sleep mode. Weakness is very random and doesn't always chose the best moments x
Other than hello it's been a while. This describes me and my legs. Every day for 6 months and counting my legs have been just flimsy. When I step its like Im doing my hardest just to lift and step. When i'm in my bed or laying down at the doctor and he asks ok lift your leg and I can't it's so hard to I know exactly how you feel. I wake and my legs just feel like weight and disconnected. I can feel them but they dont move by me consciously. Ive been on leave from my job because of it.
So yes there is people around the globe like me who knows what goes on.
It's not a precursor to paralysis is it? This is fairly new with my latest, worst bout since diagnosis. It was my torso too, which is better, and my hands, which seem to be getting better.
You know im not sure since im no doctor who sees patients come in and out of his/her office with FND so I couldnt tell you that. I can tell you my experience though with my legs and feet. I hope it doesnt stress you out but I will be real with you "feel me" (american empathy slang).
When it first happened last year it happened for 4 days. On the 4th day it was morning and I had to spend 3 hours just to try and move a big toe. then the recovery happened for a few days. Then it happened again and lasted for a few days while at work in the auto shop. I had to work all day for a couple days to smooth it out again. That happened a couple times while working there. While at that job I experienced my left side of my face paralyzed for almost a week and it came around again but my smile hasnt been the same since. Although my wife doesn't notice the difference.
This time in January it happened to my left foot and moved over to my right. Then progressed upward over into both my thighs and its been like that since. When paralysis comes to mind I think no feeling and movement but I can feel everything I just cant move them on command if someone asked me to or if I really focused on it. What I think happens in my brain is that it "forgets" because if I try to go up or down the stair it doesnt fully go up or down I struggle to move it up and I have to wait a second before the leg responds to go down. "oh im supposed to move it ok" or "wait how do I do that again?
How I felt since January though is im spending 40 hours a week at work in a shop working on machines I sit/stand/push/pull you name it. If it hasnt normalized now then screw it why bother im already trying enough. I have to relearn over and over again at some point I personally just said screw it if its like this I'll adapt (I have).
Is it permanent? A precursor? Im not sure since the nerves are there. I got poked at the chiropractor and the reflexes are there but when asked to move them I can't and he says he sees them muscles move. I think that by the brain "forgetting" it makes things harder to relearn after a while.
So in a nutshell do what you can when you can to keep the brain from forgetting. Sucks I know But I don't beat myself up for it S!@T happens!
I made my tool carrier. It has brought light in my darkness. Wheelchair or not (I made it while sitting) Im making a business out of it
I understand what you are saying. I have not experienced that at all. But my legs are starting to give way and feel heavier and heavier. They get better for a few days and then go back again. And the w o bbling is getting worse each time.
Funny you said you made a tool box. I revamped a bed head when I had a couple of good days. Raced of to buy it second had and painted it and padded it and put fabric on it. Mostly sitting in the floor, lol. Then back to "normal again. But I love what I did!!!!
I am starting to go with the poop happening. That is why I wanted a straight answer. And I appreciate it very much. I am not assuming I am going the same way as you have. But I want to hear what really happens, because I can feel things going down hill. But I am saying that objectively, I feel like an observer at the moment. I know that's weird.
I have more to show and say on a side note for my box and how I feel/think about the circumstance and my life so read further on a post. Since I can't post a pic on a reply. I like to see your project. If you work with fabrics and things like furniture that would help in my future product Ideas.
So these past few weeks I've been on leave from work because they finally said something to Human Resources ( I dont know if Aussies call it that) and told them about my performance how i'd lean on things and have a hard time getting up and down etc. That didn't hurt my feelings it was God showing himself telling me your life is changing you need to move forward.
So being at home laying, sitting, sleeping lol, and doing more sedentary work has been extremely helpful on my legs/feet. Giving them a break. Much more work mentally and and upper body. The box was done 90 % sitting down. So you'd say or think therapeutic wise it's good being more focused not being consumed by your condition and learning how to live and adapting right? Well I say thats the line being drawn there. One side it's good not struggling and being able to be mobile differently. I used a cane at first, then the walker, then an office chair. It's a safe/efficient/easier way to get around. The other side is not good struggling because with struggle comes growth. By getting out and still pushing I am still having memory on how to use my legs/feet. The knowledge is still there and the effort is still there which is helpful on many levels, saying to myself hey I can still do"..........." But NO one including myself knows whats healthy and not. No one knows the exact way I should bath or how to maneuver around how much to being independent without mobility aids and using them. So hey if im reinventing myself able to do what I enjoy doing while sitting then no one should say other wise.
We are so funny! I used my office chair too a while ago. I moved house, so eventually I sat in the office chair to do my packing. Lol.
And you are right no one does you know what you need. I used to always need someone to validate the decisions I made. Then one week, I knew I was so bad taking people round a botanic garden that I left work and went straight to a mobility shop and bought a pair of crutches. I knew it would be the only way I could keep working. And that's what I did for another 6 months.
I left work because of work issues damaging my mental health. It was nothing to do with fnd. And I moved house after I left work. Now I live in a sleepy town by the sea.
It sounds the wring way round, but I think that the more stress I release the worse the fnd gets. Or maybe I am taking control of my life along side fnd progressing?
Whatever it is. I do nothing if I need to and I do lots if I want to (lots is less than half it used to be). And I am better for it inside. So if you/we can be ourselves, find satisfying things to do with our time and even reinvent the way we live, then hell, why not? In mental health we use the phrase, "A life worth living". It is different for each person because their issues are all different. But they have got to have things they want to get out of bed for. And that's all there is to it.
Can we exchange emails on here. Then we can exchange photos of our wonderful craftsmanship!
I also think you are right about the relearning getting harder. That is why research says that the longer you have it the worse the prognosis is. And I can't blame you for thinkng screw it. I think I am getting there too. If this keeps happening, let's just keep the crutches out and get on with it!
Phhhph! Thought I was getting better after moving house. Now going backwards after a few clear days. Could be a new stressor, or just a messed up body, or both. Who knows.
It's a bit scary when you get new symptoms because you don't know where they will take you and how well you will recover each time. It doesn't really help with a low stress lifestyle, lol!!!!
Thanks for your replies. Good to know other people get the same thing in varying degrees.
Hey fellow groggy leg folk !!!
How was your days?
Just wandering if we can help each other a bit by saying what we have found helps even just a little
I expect between us we have tried many different things...... my latest fav is magnesium gel I get from health span on line and a lovely aromatherapy Muscle gel that helps them feel lighter......
Any more suggestions would be much appreciated ... of course the jacuzzi is my best medicine of all and my Yorkshire terrier dog as he helps to distracts me and helps my limp too 🐾
A jaccuzi is on my list of things to buy, when I get the money from somewhere. Perhaps a little glass of bubbles to go with it too. I think that comes under self care, or is it distraction? Haha. My dog motivates me, and makes me smile and generally feel better than I would without her. I love her dearly.
I notice that some of you can tolerate baths here.
My wife finds that baths flare her symptoms up, due I think, to temperature change.
Anyone else get this and have to avoid baths?
She's ok with warm showers, which
I find strange.
Best of wishes!
Tony and Kim
Could be getting in and out. Bending my waist often triggers or increases my wobbles.
Hi there Tony and Kim
I have the bath thing! It’s become a joke in my family - my speech goes worse and the first thing they say is did you have a bath?! My speech and legs completely go full on paralysis 9/10 times! It was one of my first episodes of when before I was diagnosed and leg paralysis happened. It can take me half a morning to get back to ‘my normal’ I have showers now but I still have the same effect but not as bad! I have to set a timer so I’m not in too long. I have a shower aid chair now which really helps. It seems to be heat for too long and extremes of temperature - but I don’t feel hot ... I constantly feel cold even though my partner says it’s warm!
Nice to know it’s not just me!
Best wishes
Hi there!
Many thanks for your reply.
It's strange how some people with FND can tolerate baths, yet other
people can't, but I guess that's how
FND can be.
It must be frustrating, especially when you like to have a nice soak, as it's good for the muscles.
Like you mention, it's got to be a temperature issue.
Have a lovely weekend.
Warmest of wishes always.
Tony and Kim
I was diagnosed with CFS/ME 17 years ago. After about a year, I started having problems with my legs, especially my left one. Similar to what you're describing. They would feel heavy, or not responding properly, like the messages from my brain weren't getting down to my legs. I would also collapse frequently. I always thought this was just another quirky symptom and didn't worry too much about it. Only when it started happening to my arms, then my torso, did I start to get worried. After lots of tests, I was finally told it was FND in March.
There are only a few things which have helped. Chiropractics and osteopathy have really helped. But it always comes back. Fendenkrais was AMAZING, but only for a few hours after the session. I also changed the type of magnesium I was taking, and that has been fabulous. It also really helped with the spasming I was getting. It got to the point I could hardly do anything without spasming and then going into temporary paralysis. But now I'm hardly spasming at all!
The magnesium I am currently taking is Metagenics brand Fibroplex MagActive Tablet. I can only get it from my naturopath, though.
Good luck!
I have that. It started with groggy and went quickly to leaden. My arms are the same. I will say after Frazier Rehab program they taught me to focus on breathing, take breaks when walking to recenter myself and not focus on that feeling.
It worked. I'm walking around the house and some outside the house. I've learned my legs do better at a slow pace. If pushed they just mess up again.
Arms are still iffy but I can use them more than before.
It can get better, but boy is it slow. 😁
I try to refocus on walking too. Well sort of try to think about normal walking, but I only manage a couple of steps and the muscles get tighter and my foot drags and it's too complicated to get right. So I just look in the shops when I am out or get on with what I am doing in the house. And just let it be what it is.
Hi Jazymay, YES this describes my legs to a"T". I used to be able to walk (with my walker) around without issues (level surfaces anyway). It all seemed to change one day when I found that I couldn't even walk from room to room in my home due to extreme fatigue and heavy feeling in my legs 
I receive ongoing PT and had to rework my plan of care setting my new goal to be able to walk to the mailbox at the end of my driveway. After about 6 weeks of working with them and my up and down mobility functions, I was able to make my goal. I am now back to my baseline mobility but I am aware that things may change at any time. Good luck!
I have gotten all my symptoms under control, but this heaviness in my legs never seems to go away. It just feels like my body is physically exhausted. I just feel so heavy, it makes me feel so tired. It’s really nice to know I’m not the only one
Yes. When I get out of bed in the morning it is like having ten tons on my shoulders, I wobble to the bathroom. During the day when I get up from my work station I have to summon courage to walk 10 yards to the printer. At the end of the day I am exhausted physically.
A total wreck. My body aches.
Is it fnd or am I going mad
Left sided sensory symptoms - hoping to feel less alone! Very depressed!
Just realized.....
Could my FND actually be dopamine deficiency? 
