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Collapsing legs and excruciating pain across hips.

Hi, I was diagnosed with MS 15 years ago and have for a number of years had a deterioration in my ability to walk any distance. As the day progresses, if I am on my legs, say for instance, tidying the kitchen, putting washing in the machine, after about 10 to15 minutes the pain across my hips and legs becomes very painful and as it increases the ability to walk and stand becomes impossible. My legs then just give way on me and I end up in a heap on the floor unable to get myself up. After I rest for a few hours my ability to stand upright and walk with my stick returns as long as I don’t attempt to do anything else that involves walking. It was discovered that I had spinal stenosis back in 2010 so I had the operation with the hope that it would sort out this problem but sadly it didn’t and the problem stayed. I am interested in finding out if this happens to anyone else with MS. I have problems lifting my legs up, ie getting into the car, putting socks on. I am beginning to wonder if it is an MS things as I have yet to find anyone else who seems to suffer with this strange concept of legs completely giving out but then recovering after rest.

Many thanks, Helen

I don’t think your problem is unique . I can be walking a few steps when my leg strength completely disappears and I crumple to the floor. Major task to get up again. (I bum shuffle to the stairs and use my arms to push my bottom onto the first, then second step. I can then manage to get back on my feet). In addition, I can be walking or simply standing erect and one knee seems to give way. Heap on the floor again !. Must be MS !

Helen, I have exactly the same problem, I go a little way and someone unplugs me from the waist down, finding my rollator a godsend as I can instantly sit if I feel it coming on, I get a few seconds before it happens that I know whats going to happen, 2 hours later after rest I can get up feel fine, take a few steps and off we go again. Hope you manage to find ways to work around it.

BC x

I would say it’s ms. But the pain could be coming from walking funny. My back hip and leg lately are sore If I put my leg in certain positions like crossing my legs. Think an osteopath is what I need. Others may have better ideas.

Hi Helen

I get exactly the same thing.

I can lift my legs either. I used to wear tights but not now as I can lift my right leg to start the process off. Hubby helps if we have a special occasion to go to.

The pain in my hips and legs isn’t as bad since starting Gabapentin but the heaviness in the legs has got worse.

I mentioned it to my Neuro and she said it was caused by the MS.

Be interested to read your replies to find out if anyone else gets this and how they deal with it.

Take care.

Shazzie x

Hi Helen, I was also diagnosed 15 years ago and exactly what you describe has been happening to me as well. It started six months ago and doesn’t seem to be getting any better. This is very dibilitating and an everyday occurrence. I also suffer from extreme stiffness, getting in and out of bed and at various other times and have been taking Baclofen for about 18 months but this doesn’t seem to be doing the job any longer. I am so glad I am not alone with this symptom. I am no longer able to work because of this and have been off work for six months and it doesn’t look like I’ll be going back. When I’m having a black moment this really makes me miserable and I have thoughts of being in a wheelchair very soon. No-one else seems to understand how bad this is. Like barnabycrumble says I cannot function without my rollator outside (but cannot move very far before this sympton flares up) and I have a trolley for indoors and sticks but I’m finding the sticks are becoming obsolete as I do need things with wheels. I am due to see my MS Nurse in a couple of weeks and this is one of the many things she will know about from me. This is so draining and upsetting I really feel like just giving up! Mine is exactly the same as yours but I feel that I’ve had 15 fair years and this disease was going to catch me up sooner or later. I just didn’t think it would be this bad. Let me know how you deal with this. Linda x

Linda, I had to give up work because of this as well, im on Baclofen for the spasms across my lower back and bottom, its still working for me at the moment, I made the desision to ‘embrase the wheels’ for now, im done fighting it and im enjoying wizzing about and keeping up with people rather than saying no or only being able to think about how much pain im going to be in if I do something, ive even joined the Disabled ramblers and hope to go out with them later in the year.The only way M.S will beat me is if I let it stop me smiling, and I can smile laying down, sitting down or standing up. Ive just spent a very indulgent ‘why me’ 6 weeks working my way up the candy crush ladder, I have evry reason to believe that I will be walking small distances again in a few months ( ever the optomist) I to feel like ive been caught up and bitten ferociously on the bottom by my M.S, I hope you find your MOJO again soon love, im just starting to find mine xx

BC x

Hi Helen

Yup, been there, done that!
It seemed like my legs just fatigued out. Funniest one was in a Lidl car park, putting the shopping away when the legs gave out and I slowly sank to my knees. Two passers-by could not lift me, but they got me up just enough for one of the staff to slip a chair under me. 10 mins rest, and I was back to normal.

The problem seems to have diminished with my FES and a 3-wheel rolator, in that I walk better, and with a better posture. But it could also be because I quit at the first signs of tiredness. Like BC, I get a few seconds warning, and a very short rest - even just standing still - will get me through the checkout and back to the car.

If you are on one stick, try two. This may stop you leaning to one side - which makes for an uneven loading across the hips. But a rollator could be a big help. I now have two - one in the car and one in the house.

Geoff

Hi Barneycrumble, thanks for your positive message. Haven’t got to the “embracing” stage yet, but the people on this site are helping me get there. I’m still having extremely black moments but I’m beginning to think about when the weather gets better that I will be able to try and enjoy it for the first time. I’ve worked everyday since I was 16 and I’m now 51! This MS thing has brought a whole new scenario into play and I am trying to adjust (sometimes not very successfully). I have also got a mobility scooter that I will learn to use when the weather gets better! OH also has to adjust, but hopefully we’ll get there. Thanks again. Linda x

Hi Helen, I would say this is my most disabling symptom. End of March last year, went to have dinner with a friend had a little sleep in the chair. Went to go home and bang legs wouldn’t hold me up, didn’t have the pain in hip area that was in base of my skull. I spent 2 weeks in hospital, iv steroids. I left hospital on a pair of crutches. I still have to use these daily, as I can make 2 steps before I go. I try ever so often to see if I can more, I am a lot stronger than they were. I have a mobility scooter and wheelchair. These allow me to enjoy outings, than the real struggle with the crutches. I still hold onto the positive thoughts I will be able to walk unaided again. Barney

Helen This was a big problem for me until a year or so ago. I did 2 things after liaising with my ms physio. I swapped a walking stick to a walking pole. This kept me standing up straight rather than leaning on a stick. I got a range of exercises to strengthen my core stability and do these religiously on a daily basis. I really feel that these combine have really helped. Take care Neil

Hi Helen This too is a big problem for me. I was dx 18mths ago, and have been suffering since then with very useless legs. Like you described after doing a few little house hold chores the legs have had enough, my pain seems to come on first in my knees then spreading throughout the legs and if I’m still persevering I then get a lot of pain in my lower back then shortly after the legs give out and I’m on the floor! I use a stick to help when out and about but I can only walk/stand for about 10min before needing to sit and rest, although 16mths ago following a big relapse I wasn’t walking at all, so I guess that’s an improvement! Anyway as Neil has said I too have been working closely with my Physio concentrating on improving my core and leg strength as well as trying to work on my balance, it is helping but it is a slow process. My Physio described my leg weakness as leg fatigue and somehow I want to improve this, what with only being 30 myself and having a 5yr old daughter I want to try and enjoy life rather than being trapped in my own home - I’m even considering getting a wheelchair so I can get out and about with my daughter! Hope you find something that helps and works for you. Liana X

This happens to me as well. Yesterday evening was the last time, after doing a little hoovering. My Wife came home to me slumped on the hallway floor leaning against the wall where I had been for the last 20mins. 10mins later I had the strength and energy to manage to get to the sofa. If I overheat a little (very common for me) i’m almost certain to collapse in a heap!!!

Stupid legs! how do you get fit if they don’t work?

One step at a time.

first spasms, every thirty seconds, left then right, had medication and it sure helped Then…

it’s called STREAMZ an ankle bracelet, you’ll have to look it up on line. I’ve been free of medication for the last six months!

even helped our blacksmith with his back. I don’t know how it works. the first step, good luck! d3nbyx