I am really down, I fall over constantly and cant get up unaided. Is any one else like this? I feel alone please help.

[linda36]

[Jaxqueline]

I fall over, am unsteady on my feet and am wary of walking downstairs, so you are not alone on this one. Do you have anyone to help you? I am embarassed walking as I am so wonky I look like I am drunk, however, this is only during flare ups and I am okay at other times. Is it constant with you? Take care & keep in touch.

[linda36 in reply to Jaxqueline]

Yes its constant with me, i only go outside if really necessary , for example appointments. those times i am in a wheelchair.i have a fantastic husband and a boy of10 and a girl of 8. I fell last night and I become almost paralysed. i couldn't move. my family was there though. i felt so sorry for my kids as they were sobbing cause i couldnt move at all.

i hope u keep well and stay in touch x

[D1ane]

Hi Linda36,

I often feel wobbly as if I am going to fall over - I call it my drunken walk. I also have trouble getting out of chairs and sometimes have to stand, as I know if I sat down I wouldn't get up when out in certain places. It's really difficult, as standing makes things worse as well. Do you fall at home alone? I have things around me so I can pull myself up. Have you thought about have bars fitted to walls or even an alarm button worn around your neck to alert an assistance team that you need help ? Or have you got a mobile phone that you keep with you at all times. I have mine with me wherever I go the phone is in my pocket with me, so if I get into trouble I can ring or text someone for help, The disabillity shops have some great stuff to help.

Take care Di

[linda36 in reply to D1ane]

Thank you so much for replying Di, just the knowledge that I'm not alone is reassuring. For example, I fell last night and I become almost paralysed. i couldn't move. my family was there, hubbie, son (10) and daughter (8). it took them almost 2 hours to get me up. it gets u really down, doesn't it. i have rails around the house, carry my phone at alltimes but when ur going to fall, there is nothing to stop it. how do you cope

[D1ane in reply to linda36]

Hi Linda,

I know, having found this site I feel more sane knowing there are others feeling similar to how I feel.

Sometimes I just can't get up so I stop there till I can. It's usually when I am in bed or sitting down and not on the floor or something, so I am lucky there. If it takes me all day then so be it. I do get very frustrated when having a flare as I can't use my hands so can't do anything including getting dressed or getting a drink or something to eat. I feel like I want to scream out loud.I think there is only so much we can do but on good days I try and enjoy and make the most of it. I don't go out on my own as I get worried that I will get stuck or run out of steam and can get confused. When I do go out, I hold on to my hubby's arm and rest as much as I need.I find it hard to use a stick as it hurts my hands to use it! Catch 22 really. I think it's only others who have Lupus or their close families really know whats it's like.

Di

[linda36 in reply to D1ane]

you sound so like me. i've been given zimmer frames but sure how can u move them if u have no strength to move it . its so catch 22 its almost comical. i don't go out on my own either but i need a wheelchair to go out so i admire u for staying as mobile as u can manage.

i agree , only those close to us know how much of a struggle it is

keep positive xx

[Sue2803 in reply to D1ane]

This sounds like you are describing my sumptoms, I often think about getting a stick but wouldnt be able to use it because of the pain in my hands and fingers./

[linda36 in reply to Sue2803]

so glad to find im not on my own with this damn illness. would love to stay in touch xx

[tiredmum]

Hi Linda

I am very much like you, I am very wobbly have fallen over numerous times.

I have reached the point where i no longer go out alone which is very sad.

I use furniture and walls to support me round the house, I have 2 bannisters on my stairs, I have also got a panic alarm which I wear at home when I am by myself.

I am too proud to use a walking stick, i hold onto my partners arm or hold his hand. I also have to sit down a lot to regain my composure so to speak.

Some days aren't as bad as others but sadly it does make you loose your confidence.

However, after my little whinge, I will NOT give up.

Good luck

[linda36 in reply to tiredmum]

I to am also too proud and dont go out alone. i cant walk more than 10 steps without weakening to the point that i cant stand. if i go out it is only for appointments and i need a wheelchair.

Yes dont give up, i wont either. take care. x

[NiksB]

I am sorry you are having a hard time, have a look at popular questions because i think there were loads of replies to this problem.

Some days im fine other days its all day and if i get up to quickly or bend down wow the whole room spins. I sometimes use a stick but lets face it if you are dizzy its not going to stop you from falling over. I often try and get up slowly from my sofa then if its a dizzy day least ive got soft landing. I dont mean to preach but have you had your blood pressure checked because my mum does it as well she dosnt have lupus but has blood pressure whiich drops through the floor if she sits or lyes down.

I think it depends how far you want to take things but i think for your own peace of mind maybe a mobile in your pocket isnt bad i think thats a great idea i will try to do the same and stairs scare me to death ours are solid wood no soft landing there...

Good luck please tell us how you get on.

Niks

[linda36 in reply to NiksB]

Stairs scare me to death too. Hate the damn things . Have rails the whole way up but if you're going to fall then there is no stopping you.

I carry mobile with me the whole time too.

I'll get my pal to take my BP tomorrow just to see.

thank you for your advice x

[Sue2803 in reply to linda36]

I moved to a bungalow cos of the problems with stairs, best thing I ever did.

[tulip47]

Hello there, yes i also fall over usually during flares......but i was put in touch via hospital with our local "falls class", they have been absolutely marvelous. I might add i had a fall last week again and i now manage to remember how to get up (sounds daft doesn't it but it makes you quite feeble), if you van get a referral it really would be worthwhile, and company helps as well.

Wish you well, and hope you manage to find something like this to suit you

christine

[linda36 in reply to tulip47]

I considered these but when i fall i cant move any muscle. So knowing how to get up is one thing but being able to move at all to do it is another. Is this how you are affected?

I hope you remain well x

[tulip47 in reply to linda36]

yes exactly the same, it is difficult to get people to understand that it takes some considerable time to be able to think about getting up, it took about 45 mins after my fall to get to chair and climb up (family very good, they teach you to laugh at yourself as you do feel pretty stupid at the things that you are now unable to do). Falls classes have helped as they have to get used to my limitations and i get to compete with two 92 yr olds who are more able than i am......

I do hope that some of this helps x

[linda36 in reply to tulip47]

that really helps, thank you. i will ring my GP in the morning to ask for a referral. i feel like im still learning even though i was diagnosed in 2009

u are very king to reply. thank u

xx

[tulip47 in reply to linda36]

you are more than welcome, it is a lonely thing to have and i don't really think we ever learn all we need to know, but on the positive side we are all coping (sometimes perhaps not too well), but this site has done more for me than any meeting or book, so i hope it will do the same for you (isn't it just nice to find people who actually know how you feel) !!!!!

[linda36 in reply to tulip47]

it really is. although i wish this debilitating disease on no one. this site is fantastic.. i have been a member of lupus uk and was put onto this site by face book. i am so glad i clicked on it, u are all worth ur weight in gold. i am learning so much from u all

thank u,

xx

[Lulabelle]

I sometimes suffer with dizziness - but thankfully not fallen down yet! Could this also be down to side affects from some of the medications that you may take?

[linda36 in reply to Lulabelle]

I have mentioned my falls etc to my consultant but he doesnt ever comment regarding it. When i was diagnosed in 2009 i was never told what to expect , what it was etc.. i have been just finding out online

x

[Lulabelle in reply to linda36]

Linda36 you need to seriously discuss this with your Consultant and if you feel that he is not listening or acting on your concerns professionally then request to see another Consultant. I had a a very old Rheum Consultant who never took my concerns seriously and basically fobbed me off for 11 yrs. It is only when i was critically ill and admitted into ITC in Oct 10 - that another one the ball Rhemu, (who I have to this day) diagnosed me with Lupus - he saved my life. I am not saying this to frighten you - but if you do not feel content with the Consultant you presently have - then explain this to him and the reasons as to why - if you are still not happy request to see another Rhemu - it worked for me! Take care Lulabelle

[schnauzersmudge]

Thats such a shame for you because without help you probably feel too unsure to go anywhere. Where I live the hospital runs a "falls clinic" mainly for people with new hips but also to assist anyone who needs help to build up confidence for walking. Perhaps there is a Falls clinic near you.

I hope this helps you.

Take care

[linda36 in reply to schnauzersmudge]

I cant actually move a muscle when i fall so i am not sure if that could help. but i will look into it

thank u for reply.x

[helentad]

Hi, yes have had this before I was diagnosed with Lupus. I was told it was Vertigo. I have taken tablets ever since, oh it gets worse when you go on planes and boats. Good luck Helen

[linda36 in reply to helentad]

gosh, i dont know about planes and boats but a walk into my kitchen does it for me .

take care

x

[russell]

I was like that about a year ago and it got really bad. My consultant put me on high dosages od steroides but they did not work. He suggested I go onto Cell cept, I have been taking it for over a year now and what a difference it has made to my life. Hpe this helps.

[nerri]

hi linda, my heart goes out to you. not through pity but through understanding. i too fall and stumble, i am very weak on my best of days but during my worst of times i am bed bound and i have to be carried to the toilet, etc. i become very unstable when trying to walk, my legs become weaker and weaker untill i fall to the floor. i too have to use a wheelchair when outdoors as my legs wont hold me up for very long. at the moment i am in another flare and havent been out for almost three months due to such server weakness, fatigue, sickness etc. i have an electric wheelchair for in the house but i try as much as possible to use my legs as i refuse to give into this. i also have crutches but when there isnt enough strength to hold yourself up then they become usless. my O.T has since fitted a stair lift and a level access shower as i am so limited to movement through pain weakness and spasms.

i also have young children and it has been heart breaking for them to see me so ill, but i try my best to always smile for them, even when i have hit the floor.

when you say you cant move, are you in pain? the reason why i ask is because i also have a neurological illness called Stiff Person Syndrome. it is very rare, only 1 in a million have it. this illness causes falls where you are unable to move and also painful spasms. apparently, there is a known link between SPS and lupus so maybe its worth mentioning to your consultant. be warned though, not many doctors have ever heared of it.

if you would like to chat further, if i can help at all then send me an inbox. sometimes it takes me a while to reply though as i have difficulty typing and using the laptop due to illness.

sending you love and smiles

nerri

[witch2]

I have fallen over so many times ger a lot of pain in feet and lower leg. I find good shoes help and so I walk the dogs good walking boots and soxs. Trimsoles are good not so expensives as some of the other soles for exercise. Had an appointment with the podiatrist and she helped. One of the problems I have is over mobile joints so my knee joints and foot joints do not always lock.

[Jude65]

I suffered from dizziness, balance problems for over 10 years and had several falls but since starting Mycophenolate Mofetil (cellcept) I have improved hugely. I was also referred to physiotherapy because my muscles were so weak through lack of exercise and arthritis. It was marvellous! I feel so much more confident now and can go out alone.

Good luck with finding a solution. Sometimes it takes a while to find the right one.

[LynseyH]

Hi Linda,

Sorry to hear that you're having a tough time. I think that feeling alone can be one of the hardest things to deal with in lupus. As if its not bad enough the horrible physical stresses we cope with daily!!!! The best thing iv found from using the internet is that im not feeling as isolated most of us will cope with the falls as an everyday part of lupus, but keeping strong mentally is such a difficult thing to do, and can be the biggest help in your daily survival...and it sounds like you have a very supportive family, it can be tough being a lupus mum to young kids, so a supportive hubby is vital for your sanity!!!

I have a two toddler girls, mya is 2 and lilly is nearly four....the guilt can be all consuming when they see the person thats supposed to be their 'invincible mummy', sprawled on the floor, unable to use her swollen 'sick hands' to push herself into sitting position!! You are definately not alone there!! And, like u, im not sure 'fall classes' would be of any help for me, as my problem often seems to be that 'the mind is willing and able...but the body says f*** off!!!'

After nine miscarriages i was told i would never be a mummy (in very nice doctor terms :)), but two sucessful pregnancies have given me the angels i never thought id have the downside is that the pregnancies also made my lupus so much worse than i ever thought it would be. I guess in a roundabout way what im trying to say is that the only way you can get through these falls, and all the other devastating stuff that lupus throws at us, is to concentrate on the things or people that you really value most.

So many people throw cliches around when you have an illness like this, hoping to provide you with some sense of hope or comfort...or maybe just because they dont actually know anything factual to tell you. My favorite cliche is that 'love conquers all'!!!. I found it funny and a bit odd when the lady said it!!!...but now i know what she meant. Because while i dont necessarily believe that love can conquer all......i definately believe through bitter experience that a LOVED PERSON has the strength to conquer the world....with a smile.

Theres no point in me saying things will get better, or it gets easier to manage...because, though we all wish for it, its just not true but please dont feel alone in this. Many Lupus sufferers dont have family support and love like we do, so we've already got it easier than a lot of others!!

Stay strong and smile for your kids - the plus side is that your children will grow up with a greater understanding of disability and a better regard for physical health...look for the silver linings!!! they're small and hard to find....but they're always there!!!

Sorry for such a huge essay!!!! chin up and live with love Linda

Good luck, Lynsey xx

ps my email address is [e-mail] if you ever need a chat :)))

[ebril]

I also keep feeling dizzy and falling over, starting physio next week to see if that helps and my daughter got hold of social services because she was scared of me falling down the stairs and in the bath. They have been brilliant and have now adapted my home, with things I never even thought would be usefull like a stool to sit by my bathroom sink to brush my teeth. Im lucky I have a good rheumy, good supportive family and the social worker is lovely too even though I didnt think they could help so maybe this is a good idea if anyone is having problems.