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Difficulty walking

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My walking seems to be getting worse by the day..as it does so I wonder what is going to happen..will I wake one morning and just simply not be able to walk? if there's anyone who has lost the ability to walk (and I'm sure there are many on here) how did it happen? maybe I won't get any worse..and I'll always be able to stumble about..which would be great..any walking would be great..but my legs are soooo weak now..I can barely stand up..they just want to buckle under me..I'm scared I wonder what to expect..if anyone can throw any light on the subject please.

 

Thanks

 

Fran

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Mal

Sorry to hear your going through a rough time ,hopefully your walking going to get better , i know i go through periods where i can hardly

walk and then it seems to get better ,

 

are you experiencing a lot of pain and fatigue ?

maybe seeing a neuro physiotherapist may help

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Sorry to hear your going through a rough time ,hopefully your walking going to get better , i know i go through periods where i can hardly

walk and then it seems to get better ,

 

are you experiencing a lot of pain and fatigue ?

maybe seeing a neuro physiotherapist may help

Thanks for your reply Mal : )

I am experiencing a lot of pain in my legs..I've discovered if I cool them down the pain eases a bit..not easy in bed tho :-/ yes and fatigue too..the worst thing is nothing ever improves for me..it just insidiously gets worse..the nature of secondary progressive I guess..I would love the opportunity to see a neuro physiotherapist...I'm currently waiting to hear from the MS nurse led clinic near me so maybe when I do get an appointment there they will be able to arrange that for me : )

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Mal

Don't be afraid to get on the phone to hurry the appointment along !

 

in the warm weather i can't have blankets on my legs , they spend all their time twitching and jumping and

i have that horrible feeling in them and can't bare the blankets even touching my legs

 

before i got a DX i used to think the pain was sciatica and used to run the cold water on my legs to get a lil

relief so there must be something in it ;)

 

Mal x

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Don't be afraid to get on the phone to hurry the appointment along !

 

in the warm weather i can't have blankets on my legs , they spend all their time twitching and jumping and

i have that horrible feeling in them and can't bare the blankets even touching my legs

 

before i got a DX i used to think the pain was sciatica and used to run the cold water on my legs to get a lil

relief so there must be something in it ;)

 

Mal x

 

Hi Mal : )

 

I shall deff chase up the MS nurse..I've only just found out (by accident) we have one that covers my area..good old Neuro told me there wasn't one..she rang me the other day to say she is still waiting for Neuro to send all my paperwork over and will get back to me to offer me an appointment once she has it..

 

I've been trying allsorts to relieve my leg pain..I do NOT want to take Gabapentin or Pregablin..TENs worked brilliantly for a time...not while I was wearing the pads strangely enough but a few hours later the pain would subside..now they work not so much..latest thing is I'm popping magnesium tablets..see how those go lol..

 

Hope you don't mind I've just had a peek at your photography...awesome!! I love tattoo'd ladies..I would like to spend a while browsing..there are so many!

 

Anyway onwards and upwards : )

 

Fran x

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Skippysprite

Hi Fran

 

Just a thought if your legs are more uncomfortable in bed caused by getting too hot, would a cage that takes the weight of the bedding help.

 

Have a word with an OT to see what they say. If you don't have an OT you ring social services adult team, or ask your GP to refer you.

 

Hope this helps, good your taking magnesium.

 

Pam x


Live for today.......never have regrets

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Hi Fran

 

Just a thought if your legs are more uncomfortable in bed caused by getting too hot, would a cage that takes the weight of the bedding help.

 

Have a word with an OT to see what they say. If you don't have an OT you ring social services adult team, or ask your GP to refer you.

 

Hope this helps, good your taking magnesium.

 

Pam x

Hi Pam : )

 

that's a brilliant idea! why didn't I think of that..I'm usually quite inventive...I will have a look on ebay see if there are any on there..

 

I do have an OT..well I did...I got the impression it was a one off visit..she came to assess my home a few weeks ago..she said I need an adapted bungalow..good luck with getting me in one I thought lol..

 

I've only been taking magnesium 3 days I think it is now..I don't know if it's just a coincedence but my leg pain has been a lot better at night..still quite bad in daytime tho..but any improvement at night is very welcome..just hope it continues..anyway off to look on ebay now : )

 

Thanks again

 

Fran

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ptlike

Hi fran

 

I can walk with the aid of crutches not well and not for long. Its crept up onme, fatigue and spasms the main reasons I struggle and heat in summer. I hope your symptoms improve. Hopefully your neuro will be able to offer some treatment, perhaps physio may help.

 

All the best

Peter

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Hi fran

 

I can walk with the aid of crutches not well and not for long. Its crept up onme, fatigue and spasms the main reasons I struggle and heat in summer. I hope your symptoms improve. Hopefully your neuro will be able to offer some treatment, perhaps physio may help.

 

All the best

Peter

 

Hi Peter

 

thank you for your reply, thats just how it feels for me too...it's creeping up onme.. lately my walking seems to be getting worse frighteningly fast..I have my hubby to hang onto to keep me steady..he often says use that walking stick! (he has one secreted in the car boot) but what he doesn't understand is my legs are so weak they feel like they will barely hold me up..a walking stick still involves walking! at moment I'm trying to get my head around possibly using one of those mobility shopping trolly things they have at Tesco..I seem to have this mental block about using any visable aids..

 

Anyway all the best to you too Peter : )

 

Fran

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Nick

You have to find what is best for you. It is very difficult to get over the problem of your own 'perception' when it comes to walking aids. They are for you, not anyone else, and what other people think is completely unimportant. I started off very reluctantly using one stick, quickly found I knew nothing about the complicated world of walking sticks!!! For a start I was using the stick on my right side (the weak side) I did not understand about having the correct length and knew nothing about the different types of grip/handle. Getting over this with the help of a physiotherapist I ended up to start with having a stick of around the length of the distance from floor to hipbone, on the opposite side to my 'weak' side and having an ergonomic comfy grip.

Worked a treat and made a big difference! Things do creep up on you and these days I use two sticks and a 'foot up' device, I also have some crutches which to be honest with you don't suit me as well as sticks. Fatigue always limits my walking ability and if I want to go any distance I use either my scooter or a wheelchair. All these things are difficult to accept and there is always the danger that you can over use things. My own experience of MS makes me feel I need to keep up the exercise and you need to build up a kind of understanding as to what you can and can't do. This is totally bizarre to others who can't see where your 'disability' actually lies. For example, people assume all sorts of things when you are using a walking stick, most of which are completely wrong, same with wheelchairs and scooters. That DOES NOT MATTER!!! it is THIER PROBLEM..........NOT YOURS!!!!

All these things are simply there to help you and if they do that just be happy.

 

PS Most of my fatigue today was caused by a lady sales person trying to flog us some floor tiles in a shop, I walked in (two sticks) fine, half an hour of that and I fell out like a drunk!!!

 

Nick


Edited by Nick
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Just another Warrior...........

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ptlike

Hi Fran

I was diagnosed with ms 27 years ago but had symptoms a further 7 years before. I was roofing 6, 7 years ago but I couldn't give a date when walking got harder, just has solely .I went from stick to 2 then crutches and now mobility scooter. I was reluctant like you to all those stages but I must say scooters fab barring oldd dissaster. I should have given in early. All aids save energy, look bad maybe but you get over it lol and need less help. My family ask me why I didnt move on sooner.

Nicks right to say do it at your pace.

Good look and best wishes

Peter

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ptlike

Slowly not solely lol predicted text for you

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Hi Fran

I was diagnosed with ms 27 years ago but had symptoms a further 7 years before. I was roofing 6, 7 years ago but I couldn't give a date when walking got harder, just has solely .I went from stick to 2 then crutches and now mobility scooter. I was reluctant like you to all those stages but I must say scooters fab barring oldd dissaster. I should have given in early. All aids save energy, look bad maybe but you get over it lol and need less help. My family ask me why I didnt move on sooner.

Nicks right to say do it at your pace.

Good look and best wishes

Peter

 

Hi Pete

 

just read about your near disaster eeek.. that was a close call : / my trick is to just ride out in front of traffic for no reason : 0 I have a scooter but don't often use it..only if going to a town or the coast..the parking is very good round here so I can get very close to most places I need to go..all these aids my family keep trying to thrust upon me are just not good for my image!! lol..

 

Anyway hope you have a nice Easter: )

 

Fran

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You have to find what is best for you. It is very difficult to get over the problem of your own 'perception' when it comes to walking aids. They are for you, not anyone else, and what other people think is completely unimportant. I started off very reluctantly using one stick, quickly found I knew nothing about the complicated world of walking sticks!!! For a start I was using the stick on my right side (the weak side) I did not understand about having the correct length and knew nothing about the different types of grip/handle. Getting over this with the help of a physiotherapist I ended up to start with having a stick of around the length of the distance from floor to hipbone, on the opposite side to my 'weak' side and having an ergonomic comfy grip.

Worked a treat and made a big difference! Things do creep up on you and these days I use two sticks and a 'foot up' device, I also have some crutches which to be honest with you don't suit me as well as sticks. Fatigue always limits my walking ability and if I want to go any distance I use either my scooter or a wheelchair. All these things are difficult to accept and there is always the danger that you can over use things. My own experience of MS makes me feel I need to keep up the exercise and you need to build up a kind of understanding as to what you can and can't do. This is totally bizarre to others who can't see where your 'disability' actually lies. For example, people assume all sorts of things when you are using a walking stick, most of which are completely wrong, same with wheelchairs and scooters. That DOES NOT MATTER!!! it is THIER PROBLEM..........NOT YOURS!!!!

All these things are simply there to help you and if they do that just be happy.

 

PS Most of my fatigue today was caused by a lady sales person trying to flog us some floor tiles in a shop, I walked in (two sticks) fine, half an hour of that and I fell out like a drunk!!!

 

Nick

 

Thank you for your reply Nick : )

I never realised you need to be well I guess 'fitted' for a stick..I am currently waiting to attend my local MS nurse led clinic so maybe that might be something they will be able to help me with there..but like you I also very much feel the need to keep doing as much as possible so I can build up an understanding where my disability lies..my motto is if I don't use it I will lose it (a lot faster) the worst thing is I used to be so fit and active..it's very hard mentally to adjust as I'm sure you know..but what you said - "people assume all sorts of things when you are using a walking stick, most of which are completely wrong, same with wheelchairs and scooters. That DOES NOT MATTER!!! it is THIER PROBLEM..........NOT YOURS!!!!" Those words are a massive help when I get all negative I'll pop back and re-read them...and the drunk bit...that made me grin I can sooo relate to that...off down back path to dustbin at end of garden I often make diversions into the flower beds!

 

Anyway I hope you have a nice Easter : )

 

Fran

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Nick

Thanks Fran for your words.

We all have negative times but I'm a 'hope-a-holic' Anyway these things all take a lot of working out. I've said this before but when first diagnosed I spent too much time attempting to 'overcome' fatigue issues. We are all different but it really pays to work with MS rather than against it. Identifying the issues which may affect your abilities and using the 'good times' to get some physical strength and (more importantly) stamina back, allows you to 'wait out' and 'back off' when the going gets tough. Thats the difficult bit!

 

Anyway do have a good time with all that Easter Chocolate!!

 

Nick


Just another Warrior...........

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jayjill

Hi Fran, I'm a bit late to the party but just wanted to share briefly what I've found helpful. I take magnesium now and believe this does reduce spasms (have read this is others' experience too); I combine this with calcium, vit k2 and vit d3 (5000iu), supplements eh!! I was set back Feb last year by # to hip :shithappens: and have had problem with spasms since. I've just finished an exercise therapy group (about 6-7 sessions) run by neurophysiotherapist and recommend this - you can raise issues and receive thoughtful advice. It's good to see what exercise works for you. I now have a recumbent exercise bike on which I do about 10 mins daily (wearing my ipod! Great). I use a crutch to walk on stronger side, like Nick says!), no longer drive and have just got a mobility scooter. This was hard to do, but my energy was so quickly depleted that the scooter is actually a massive help now. Yes if the distance is manageable for me it's important to have the exercise. So find out what you need and go for it! (Like the ageing rock chick moniker BTW, I was pleased to be called a rock chick just last year!) Jill x


Edited by jayjill
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elma

Hi Fran, can I ask why you are reluctant to take Gabapentin? I suffered a lot with leg pain and couldn't bear having sheets or covers on my legs in bed. Gabapentin cured me of this pain. I have taken it for a number of years now. Had some initial problems but tolerate it well now and prefer taking it to the pain I was experiencing. I too am now secondary progressive and use a stick though more often now, a walker which gives me stability

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ptlike

Hi Fran and Jill I wondered how you square rock chicks and scooter lol. Believe me Fran being male and having basket on front of scooter is not a cool image lol. I just don't care anymore, age thing I guess, Easter's great especially the chocolate lol I convince myself it's good for me ha. Hope Easter's being good for you.

 

Best wishes

Peter

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jayjill

Hi Peter, well I say that chocolate is good for you (a little bit of what you fancy...) so enjoy! As regards squaring things, it's attitude that counts so it's down to you - do things in style. :butterfly: And wishing you a good time this Easter despite the wind and the rain!

Jill

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ptlike

Hi Jill\scooter girl, Easter was great I personally had an eggceptionally good time, maybe eaten to much medicinal chocolate but a cross I will bear lol.

Hope yours has being good too and everyone elses,

 

Best wishes

Peter

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Hi Fran, can I ask why you are reluctant to take Gabapentin? I suffered a lot with leg pain and couldn't bear having sheets or covers on my legs in bed. Gabapentin cured me of this pain. I have taken it for a number of years now. Had some initial problems but tolerate it well now and prefer taking it to the pain I was experiencing. I too am now secondary progressive and use a stick though more often now, a walker which gives me stability

 

Thank you for your reply Elma : )

 

the first time I took Gabapentin I woke at 1am fighting to breathe..which to be honest scared the hell outta me! anyway after a couple of weeks when the terror subsided lol..I thought try it again it could have just been one of those things..but exactly the same thing happened again : ( so I give up now..no way I want that to keep happening.. I do find my TENs machine helps a huge amount : )

 

Fran


Edited by Softsqueezy

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Hi Fran and Jill I wondered how you square rock chicks and scooter lol. Believe me Fran being male and having basket on front of scooter is not a cool image lol. I just don't care anymore, age thing I guess, Easter's great especially the chocolate lol I convince myself it's good for me ha. Hope Easter's being good for you.

 

Best wishes

Peter

 

Hi Peter : )

 

thats my problem you see..rock chick image and scooter do not mix : ( lol.. aaah I'll get used to it just like you with your basket hehe..

 

Well I've had a fabby Easter..loads n loads of choccie eggs except choccie gives me migraine : ( but I'm damn well eating a bit here and there tho..luckily I have some very good migraine tablets : D I'm sure you're right choccie is good for you..it certainly makes me very happy ; )

 

Best wishes

Fran

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Thanks Fran for your words.

We all have negative times but I'm a 'hope-a-holic' Anyway these things all take a lot of working out. I've said this before but when first diagnosed I spent too much time attempting to 'overcome' fatigue issues. We are all different but it really pays to work with MS rather than against it. Identifying the issues which may affect your abilities and using the 'good times' to get some physical strength and (more importantly) stamina back, allows you to 'wait out' and 'back off' when the going gets tough. Thats the difficult bit!

 

Anyway do have a good time with all that Easter Chocolate!!

 

Nick

 

Hi Nick

 

I think you hit the nail on the head for me there when you said when you were first diagnosed you spent too much time attempting to overcome fatigue issues..I feel I'm in a constant battle with MS symptoms..but I'm getting to the point now...especially after today when trying to walk hit an all time low...I'm going to stop stressing about all this and go with the flow..stressing is getting me nowhere..I want to be happy me again : )

 

Hope you had a great Easter : )

 

Fran

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Thanks Fran for your words.

We all have negative times but I'm a 'hope-a-holic' Anyway these things all take a lot of working out. I've said this before but when first diagnosed I spent too much time attempting to 'overcome' fatigue issues. We are all different but it really pays to work with MS rather than against it. Identifying the issues which may affect your abilities and using the 'good times' to get some physical strength and (more importantly) stamina back, allows you to 'wait out' and 'back off' when the going gets tough. Thats the difficult bit!

 

Anyway do have a good time with all that Easter Chocolate!!

 

Nick

 

I like that Nick...hope-a-holic yeah that is a great word : ))

 

Fran

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Nick

Stress is indeed the problem, I had no idea when I was diagnosed just how stressed I was, You know, not knowing what's coming next , worry about job, worry about the family, the whole gambit. I know you have been diagnosed a while but like me you still need to remind yourself constantly not to 'wobble' to much or you might 'fall off' I'm still not much good at listening to my own advice, but at least I know the theory.... its all about 'Balance'


Just another Warrior...........

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