@Ziva

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Ziva

Collapse - legs won't do anything?

Hi Does anyone else have similar experience? My energy levels can feel charged and I feel strong but after a short distance say trying to take dogs out or today sorting rubbish bins out my legs cannot walk at all. Strangers have been very kind helping me get home. But I feel so stupid my mobility is now limited but are these sort of 'attacks' are unusual. Normally I rely on one stick and if I am not so good I can use two sticks. But after meditating I do feel stronger- my 'pay as you go' is refuelled. So does anyone have similar experiences ?

Stumbler

@Stumbler

This kind of fatigue has dogged me for ages. I used to be a sporty type, playing football, walking, swimming, etc., so I know my legs aren't weak. But, my brain seems to think that they can't do too much. I use two sticks and my range is severely limited. If I go too far, my brain just says that my legs can longer hold my body weight and I crumble. It keeps life interesting............

Ziva

@Ziva

Thanks very much for your reply - its somehow so good to hear your experience. This disease can be quite isolating at times. The way you describe it is exactly how it feels ! I get stuck in all sorts of places. Like you I used to be very active running a lot etc maybe that is such a difficult adjustment. Naw I have grown to love swimming, you can't fall over when I am in the pool. It is just difficult to adjust my expectations. So thank you.

loulou

@loulou

Hi @Ziva, if I end up on the floor it is usually because my legs have just given way just like that or Ive tried to bend down and pick something up from the floor, my kids are used to me calling out because Im stuck in a position frantically hanging on to some bit of furniture before I hit the deck!!, If I do fall when I am on my own my legs go into a panic mood and it feels like them temporarily paralyse for a bit, I have to totally relax myself to bend my legs and get up again! my centre island in my kitchen is a god-send :) ! I start to really tire around 5-6pm, thats when my legs are weak when Im still trying to use spoons I havn't got left for the day! Have you moved yet? if so did it all go well are you happy in your new home? Loulou x

Aurora

@Aurora

I won't collapse but when I walk a determined amount I'd stat to limp, look drunk, funny balance...Then I have to rest. It's the famous fatigue symptom.

Kazzy

@Kazzy

This happens to me and was told also it sounds like fatigue. So frustrating when I feel like I can do things and I have the energy. Obviously my body has different ideas. After about 20 to 30 mins of activity ex housework if I don't sit down legs will crumble. I also walk like I'm drunk and have had a good few. It passes when I rest but I just know now I can't sustain walking a long distance. I used to love exercise and it had to be tough but now I do swimming or yoga. Feel safer in the pool too.

Cazzzzzy

@Cazzzzzy

Yep! I also can relate to all of the above ... Legs get soooooo unbelievably heavy! I do also find a good dose of meditation will bring me back to "normal" ... xxx

jenko1972

@jenko1972

Hi Since January last year I've gone from walking to a wheelchair. i had a stick but had some bad experiences where I kinda fell and couldn't get back up. The kindness of strangers really helped. Collapsing in the Lego store with my youngest was the turning point. I didn't want to get a wheelchair but knew if I wanted to go out I had to. Needless to say its really helped me. Best wishes Neil

AliM86

@AliM86

Hi. I am just recovering from a relapse which I've experienced the same; drunken walking, jelly legs, like I've ran 60 miles. I have started back this week, which results in I think fatigue. Shaking hands and the symptoms above. I'm hoping they are the end of my relapse but think it may be fatigue in which case no more strenuous exercise :( Like you though, I love swimming. I used to love Pilates but that's on hold as my balance has been awful :(

cameron

@cameron

I'm a load better since I got a splint, because it literally does strengthen the leg. I also listened to @Loulou's recommendation of buying a pair of Clark's WaveWalk shoes (there are men's and women's). Apparently the sole is medically designed to help gait. I was a bit sceptical, but actually have found that they do change (i.e. improve) your walking. You can lift your feet better and the shape gives you a slight forward rocking motion which makes you less likely to trip up. Apart from that, I notice that any residual tiredness or poor sleep directly affects how far I can go. Annoying.

Stumbler

@Stumbler

@AliM86 , don't give up on the swimming. It's the best exercise for us. Just don't over-do it. As for Pilates, see if there's an MS Treatment Centre near you or a Pilates session specifically for the lesser-abled. It's a great form of exercise to keep your core muscles in shape.

Ziva

@Ziva

Thank you so much for all the responses I have had from my query. Is been quite overwhelming to have such understanding honest angry irritable frustrated..... etc, etc yet truly understanding and sympathetic comments from people going through a similar struggle. I was quite hesitant about asking a question on the website which is something I've not done before, that suddenly makes huge sense! Very heartwarming. Swimming is the best way of feeling good about myself physically and mentally. I do tend to take this to excess (because I enjoy challenging myself) which means that is it for the next couple of days and lots of meditation which I find tremendously restoring. So I've just started my retirement at 50 ! And I will have to find a different way of living my life ! So thank you for all the comments you made.

PAVO

@PAVO

happens to me all the time I have had more bruises on my knees now than I had when I was a child or when I played rugby pre MS it always feels like I am walking on a very sticky floor, foot drop does not help. it does get a lot worse between 5 and 7 in the evening I try not to plan anything at these times, I use a walking stick although I have a wheelchair which I use when I am feeling bad or when I know I am going to have to do a lot of walking or queueing

Aurora

@Aurora

@Ziva is this a new symptom for you? @Alim86 If you can go swimming, that's amazing. I fell super energise after. Only bit don't like it's to get dress after @jenko 1972 I'll def do the same when the moment arrived. But will be hard. @Stumbler 100% Core, hips and gluteus muscles are very important. And pilates work on those muscles. @cameron good to know about the shoes.

Ziva

@Ziva

Just to explain I have had these episodes over the last few years but have stumbled on and made all sorts excuses- I was diagnosed in 1992 but denied it to myself and everyone else until the beginning of last year. So this sort of thing is not new to me. In retrospect I think my denial helped keep me well. Now there is no running away from ms. I used to run a lot but kept falling over.

Aurora

@Aurora

@Ziva Wow you have keep the MS quiet for more than 20 years. Sometimes, denial helps. You are the proof! I'm very jealous, I haven't be able to run for the last 5 years o more. Now what helps me is to be aware of what I can and can't do and how to do it without wasting energy.

sunnydaylover

@sunnydaylover

Hi everyone, I have 'stumbled',(apt word just now) across this and all this above is exactly whats happening to me.I go back to neurology to get MRI results. I am so worried its MS or spinal stenosis but something weird is happening and its so out of control. I have had to leave my job as being a support worker having to take people from A to B to C all day, I just couldn't do it anymore and I know fellow staff must have thought I was a fraud as yes the 5 minutes or so they saw me at beginning of a shift I was fine, but be with me half an hour into walking and i look like a drunk thats wanting to collapse.Weird and horrible. I have sat so much this last 2 days my back hurts. I have no time for this. It was not in my plan. I got my weight down by 3 and half stone and have 3 stone to go.I was training 5 or 6 days a week, doing strength training, weights, metafit, swimming, kettlebells, I found a new life that I loved and last year I felt AWESOME for the first time ever in my life I started to believe in myself.and now its like my world has collapsed. I am dreading Tuesdays appointment, but need to know because being in this land of being in limbo is depressing and I have put on 4 lbs since xmas, which yes, it isn't much, and I will train again as soon as I know I am not going to hurt my spine if its not MS but something disc related. I have no pain whatsoever, pins and needles and numbness and electric shock feelings but this is the first place where I have read what is exactly happening to me. I thought perhaps this can't be MS, because your symptoms would be what they are and not worsen after activity, but doc explained to me that it could be fatigue and I am gobsmacked for want of a better word. I have heard of fatigue but I would have thought someone is exaggerating it if they said they had it, but wow, now I know.Unreal. We have to help each other through all this. Can I ask, has anyone else felt their core kind of collapse?Thats the only way I can describe it.Like I can't hold in my tummy anymore.I feel horrendously big and yes I still have weight to lose, but I feel like I look like I have gained 4 stone not 4 lbs.I just need my legs back, as I know you all do too. Andie x

Stumbler

@Stumbler

Hi, @sunnydaylover and welcome. Unfortunately, the symptoms of MS are also symptomatic of quite a few other conditions too, from a vitamin deficiency upwards. So, bear with it until you've seen the neurologist about the MRI results. In the meantime, be a bit kind to yourself. Any stress has a derogatory effect on us, especially our Central nervous System (CNS), so is best avoided. I know, at a time like this, I hear you say. Yes, because stressing about anything does not improve the situation. So, best of luck with the MRI results and let us know the result(s).

sunnydaylover

@sunnydaylover

Thank you. Yeh, I know, I know, I just can't believe whats happening to me. Roll on Tuesday.Will let you know. I have so many scenarios running through my head. I didn't know I was such a control freak becaus now I am not in control and I can't cope! x

Stumbler

@Stumbler

@sunnydaylover, that's the issue that you need to try to address. The brain is racing at 100 mph going through a range of scenarios, but, it's not going to change a thing, is it? Your brain will be better used in processing what's actually going wrong and trying to put it right. So, try and relax up a bit before tomorrow. Pamper yourself or have a duvet day....... :wink:

Gwenny

@Gwenny

It's so hard not being able to control what's going on, believe me, when I was first diagnosed last August, we lived in denial for quite a few weeks. We'd been told I had MS, but just didn't believe it, I thought I'd go to bed one night and get up the next day and everything would be back to "normal" We soon learned that I wasn't able to do things I used to do, and even now I don't always listen to my body. If I'm having a good day, I think I'll just do some vacuuming, then I'll do a few more jobs, BUT the next day I simply don't have any energy to do much at all. One day I will learn, but let's say I'm not a quick learner :-) I hope your Appointment goes well and you get some answers. In the meantime I've found this site a great help in the past, we're all in this together, so use the support given. Take care :-)

sunnydaylover

@sunnydaylover

@Stumbler...Thank you. I know. I am not the only one stressing about things. I can't believe how many other people are in the same boat. Knowing what you are dealing with must be easier than this. Roll on tomorrow, though im not holding out much hope of anything definite as people seem to wait years for diagnosis. Have been in the garden, have stroked and fed a bumble bee some sugar water and watched him buzz off again and am now sat chilling with one of our dogs. @Gwenny. Thanks to you too @Ziva, how are you now? Andie

Ziva

@Ziva

Hi to all! Firstly good luck for tomorrow Andie! I hope all goes well sometimes these appt can be so disappointing- but dog company can be the best de stressor! Ours spend many hours sleeping and do so little in the day..and the evening. I have started to accept that my legs have limited supply of energy, and this site has contributed to my acceptance of this! Fatigue, seems to be A consistent feature of this disease. And accepting that has been hard and the limitations put on my life has been profound. But I remain optimistic about the future. It means change that perhaps I needed to make but wasn't ready to accept. That means a future change in direction. The change that perhaps I should have made some years ago. But I am making them to now-so hear is to the future!

sunnydaylover

@sunnydaylover

Hi, yeh, I have read many times on various sites about the long wait diagnosing can be. Whats for us won't go past us, so my mother used to tell me. I think shock of the change is hard to believe, the not having control of what always came naturally. I feel I have to gear up for the worse, then anything less will be better.But whatever it is, I just need to know, I can't do this not knowing much longer. Yes, dogs are just the best.Great company all the time. Thank you for replying. xx

Graham100

@Graham100

Not on your own, I put it down to the baclofen iv been taking for 15 months, reading things all the time as I do, I read that baclofen can make the muscles week, so because my legs just won't hold me up log enough to even pee, it was time to stop the pills, which I did about 2 weeks ago,, feel exactly the same, no worse, good thing is, my bowls are working every day instead of twice a week, so the pills causing constipation?? Sorry about that subject, anyway yes legs still go asleep. My wife now. Thinking I need a frame not just a stick, because I keep falling forward, NO No No. Not yet. Lol

Stumbler

@Stumbler

Baclofen is a bit of a double-edged sword. It relieves muscle spasms and that's because it's a muscle relaxant. Now, our muscles don't need another reason to relax, our MS is already allowing our brains to think our muscles are already weak! :???: I had been prescribed Baclofen but my physio saw it and said I didn't want that. He was working on getting my hamstrings working again for me and saw Baclofen as being very counter-productive.

Graham100

@Graham100

Thanks stumbler, that's convicted me not to start taking again, feel like an addict of some kind, try to stop a drug, have a trip, and the brain says that's because you need a baclofen, TAKE ONE Take One,, would have tripped anyway. Lol

sunnydaylover

@sunnydaylover

I have MS. I knew it was a possibility, but knew it could be other things too. Then after reading how long some people have waited I was convinced they would ask for more tests so it was a shock today after only about 10months in total of strange things happening, and one MRI that I was told I definetly have MS. Shocked scared and very upset, but I knw once I get my head round this, I will fight this as much as I can.:0(

Cazzzzzy

@Cazzzzzy

So sorry to hear this @sunnydaylover :( ... I know even when expecting it the shock is still very strong! You've found a good place here where you'll find lots of support and understanding through this... You sound like a fighting spirit and that will help you through the days... Remember you have MS and MS doesn't have you! Do you know what type of MS you have? Hopefully you have RR as there are lots of great drugs available to help control it! Hugs xxx

sunnydaylover

@sunnydaylover

Hi, thank you. I will try, I am alive, I have to fight.I am tonight just so shocked, does the lumbar puncture confirm the type you have, or just confirms the diagnosis for them? I suppose all questions I had wanted to ask went out the window after she told me.Just so shocked that this is happening to me.Why do they need to do LP if the mri shows you definitely have it? Such alot to take in.xxx

sunnydaylover

@sunnydaylover

p.s and how come some people wait years to find out and they know mine already?Does that indicate theyve seen something bad on my mri?sorry, just got a zillion questions xx

Stumbler

@Stumbler

@sunnydaylover , you have an understandable need for knowledge. So you pose the questions and we'll do our best to answer them. I'd suggest stating a new topic for each question to avoid confusion. :wink:

Cazzzzzy

@Cazzzzzy

Don't be sorry, I know my mind was racing when I found out... It doesn't mean they've seen anything super worse on your MRI, you have probably been lucky and had some good doctors that have diagnosed you quickly... Most people that have had to wait a long time to be diagnosed I think is because they haven't had the right tests or been taken seriously enough by their doctors - well that's my experience anyway... The LP will pick up something in the spinal fluid (I can't even pronounce it let alone spell it ;) :? ) and that will be either negative or positive... Sometimes though that isn't conclusive enough and you can get false negatives even if you have MS so they go by the results of a few different tests (MRI's, LP's, Neuro Exams and Evoked Potential Tests for example) and your symptoms and that's how they find the diagnosis... I hope one day there is a simple blood tests to confirm but for now that's what they do... They will decide what type you have by yes your MRI and your symptoms I think... I'm PPMS and never had a LP, they went by my brain and spine MRI's and symptoms and that was enough for them to decide.... I am having an Evoked Potential test in a couple of weeks! (18 months after my diagnosis!) I know it's a scary time but nothing bad will happen overnight and try and take each day as it comes and as easily as you can... I honestly know how absolutely awful it is and I do totally understand how you feel but it does get easier to accept... I wish I could help more! Also you should be in touch with an MS nurse - they are lovely and if you think of any questions write them down as soon as you can and take them to your next appointment, I know once the shock hits the questions do fly out the window but the next time you're there you can bombard them with questions... But ask away here too as lots of people here can help :) Sending you hugs and best wishes xxx

Gwenny

@Gwenny

So sorry to hear that it is MS, but at least you have an answer. Don't be afraid to ask questions, I've found this site to be so supportive, and there's no such thing as s silly question, so ask away :-) My MS was diagnosed with MRI's & LP, probably lucky for me that most of my body was numb at the time I had the LP, so I felt nothing. Everyone else has said you'll get heaps of support on here, and I personally have found it so helpful. It will take time to accept the diagnosis, believe me, I thought we owned the tissue factory after about the first month. It does get a bit easier in time, but remember "you have MS, it doesn't have you" I love your fighting spirit, and you will get through this, it may take some time, but it will happen. Big hugs to you sunnydaylover, we're all here for you, take care. xxxx

sunnydaylover

@sunnydaylover

Shocked, overwhelmed and blown away xx

Graham100

@Graham100

Hi again sunnydaylover, don't let it get to you, not sure if me brain went dead before my DX, but I have never felt shock or fear, my ms nurse keeps saying you haven't come to terms with it yet?? Just because I'm still laughing and making a joke of every situation mabe?? Yes it has total changed my life, when I say I can't do the washing up or tidy up, my wife doesn't moan anymore, lol, I can't walk far now but can park were I like, and got shots back on my handy cap, golfers understand that one. Life is just a game, play it to your advantage!!! Think really negatively, then if its bad, your prepared, if its not, it's a bonus,, lol