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Behçet's UK
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Legs locking up

Does anyone have problems with their limbs locking up so they are totally immobile? Happened quite a few times over the last fortnight and again today at clinic 12. The doctor had to lift my leg for me. Seems to affect legs, ankle and foot become totally rigid and I can’t move them.

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Hi jpet72

My limbs do not totally lock but have begun to create weird sensations that could develop into something similar to what you experience. I keep waiting for this to happen. My right leg suddenly feels like cotton wool, then heavy, as if in concrete and like I am immobilised temporarily. The very same with my hands after holding or gripping something for an extended length of time. I have mentioned this a few times but no one seems to appear to find it a concern. Although, when experiencing this I find it quite scary and quite disconcerting.

What feedback did you receive from your GP regarding this?

S x

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Given amitriptline and gabapentin for the parathesia but no explanation except it’s Vasculitis

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Oh! Simple as that? No further testing required, obviously!

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Me too. My mobility is getting worse. My legs feel they will give out off and on also ankles lock and Does anyone Dr.s I see care?? No, because they dont know what to do for me.

I dont want to end up in a nursing home, i have a 14 yr old and at 48..I wanted to get better.

Is there any hope??

Uhhhggggg

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There has to be hope, Ang4upmich! Don’t give up. 🥰 I agree that some days we have all on to haul ourselves out of bed, let alone function in any way, shape or form. Reassuring, but not great that we are in a similar situation.

💐x

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Thank you Minnskimoo . It does help that we are not alone. It feels like it on the day to day. I don't feel sorry for myself ( once in a while i do) just keep hope for treatment to work . I never know how im going to feel when I awake.

So I have these down days.

Im trying to learn the balance between acceptance and healing.

Its a real struggle for me.

I said yesterday.." at least I CAN walk, even if its slow" " at least I CAN talk and Love and See!"

I remember so clearly how it felt to run, hike, play with my kids, clean, cook, work..at times I feel useless.

Then I remember, doing is not Being. Its all how much love we can give... That is still service.

Somedays it is just like being tortured. Others its just a force to push forward.

I hope you can relate to what Im saying. :)

Many blessings to you

Angela

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I absolutely can relate! No doubt about it! 🥰 x

I totally understand all you have said! And believe me, to feel the way you do is not being ‘sorry for yourself’ Who wouldn’t feel the way we do and not feel down and disheartened? It is at times , unbearable, only just acceptable, and on certain days, for me, I am tempted to go outside and shout out for the sheer hell of letting go. (Think there’s a song in there somewhere! Chuckle😉)

I too miss doing many things I used to before all of this. And that is the problem, but completely normal to feel cross and upset about it. Don’t give yourself a hard time. You are obviously trying to keep the balance - which is not always easy or straightforward-as anyone with a chronic illness will fully appreciate.

‘Love’ is good word and a great gift to give but, remember to give yourself a little now and again too! 💕

Take care.

Sending a virtual hug your way (((🤗)))

Sue X

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Your Awesome...send me an email anytime..

ang4healinghands@gmail.com

I wish you to keep Joy in your heart and focus on what or who you have in your life, just as I will "try" ,

To let go of the past and stay in the now. To see the blessings of breath and life, to accept what is in each moment.

This is what I WILL do to the best of my ability.

Blessings,

Angela

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Likewise Ang4upmich! x💐

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Yeh I have been walking on the top of my toe for the past year now and pain down my right side. So over it!!

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For me dear...both feet and ankles lock on me and i walk around like a slow penguin..man does it hurt :(

So sorry about this.

My kegs dont but get very very weak like im going to fall.

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A slow penguin.... that is precisely how I walk too. I have to use my trousers to grab my leg to move it when it locks as I have no control to lift them myself

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Has anyone tried Lyrica for this leg/foot pain. Have tried quite a few things. Anyone have a solution.

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I'm on lyrica and it doesn't help me but I'm only on lyrica 75 mg 2xs a day. I feel to sleepy in any stronger. Are you on lyrica? If so what mg?

Blessings,

Angela

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Can’t take Lyrica at the moment on other seizure medication. Mobic seems to be helping a little. See another physio on Monday. Glad Lyrica is helping you a bit!!

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Try CBD. I use to get the same thing but this helps. Don't know why. Don't care.

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I use a good quality cbd.

How many mg?

Currently i take only 25 mg pure cbd.

I still experience pain, but it helps, which makes me think maybe I need more.

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1 mg. A dropper full. Sometimes less, sometimes more. Depends on the day.

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Hi all, isn’t it awful when there doesn’t seem to be the help we need. I find that sometimes when walking flight of stairs or two as going up legs get heavier and heavier and by time at top they ache so bad to where am breathing through pain and wincing in pain with eyes closed and then wears off after about 4 mins. Hard to describe. Anyone else get this?

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Yeh not very nice. Just found out have had fractures in my foot dr hadn’t told me about. Know what you mean about the stairs!!

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I understand what you are feeling. Why doesn't anyone know how to help us?

I've had Dr.s say, I'm sorry, i just don't know what to do...or Good Luck..

I never thought I would hear a dr. Say Good Luck!

This is the frustrating part, the lack of compassion for this aweful dis-ease !!

WE can't give Up!!!!

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Cry for you; specialist is the same don’t think he does no what to do any more🌷

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Sorry to hear about the breathing and pain. The pits. Awful it most certainly is!

I get lactic acid build up going up a large flight of stairs! Legs feel like lead sometimes. Breathing not so bad - for now! Definitely unfit here...😐

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I got that back in 2013 when I found walking harder and harder. It got worse and now it’s crutch for every day else electric wheelchair otherwise

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Hi it’s not hard to breath but have to breath through the pain if u know what I mean

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Sorry Benne09!

Yes, I understand. Still unpleasant enough for you though!

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