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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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My joints seem to keep giving way and it is scaring me. I could be standing or walking and then suddenly my right knee will simply collapse beneath me. I was turning a key in the door and suddenly felt like my wrist was sprained. Today I was serving fish with a fish slice and it felt like something snapped in my forearm. These occurrences are intensely painful for a few seconds and then sore for hour/days afterwards but before they happen I am in relatively little pain in the affected limb. Is this a normal occurrence for RA? Does it signify joint damage or could it just be inflammation? I am still wearing L Plates with this horrible disease and don't know what to expect. I have had a rocky road getting established on dmards and have had virtually no dmards now for 8 weeks. I had a 4 month period without dmards while the consultants were doing tests. I keep reading that most joint damage occurs in the first year and am panicking. I am seeing the consultant on Monday about a new dmard. Please advise me if you can.
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Naomi,
Pretty par for the course I think. No warning whatsoever and whoops you drop something, your ankle turns over, you reach for a cup and your shoulder twinges. I call these my scream out loud pains but they don't last long. I don't know why it happens though, so can't help you with that bit. My L plates are only a little bit older than yours so still learning myself. Just wanted to re-assure you that you weren't alone. I think though that it takes quite a long time for joint damage to occur. I've already got some in my feet but that's down to a delay in diagnosis, mainly my fault for not going to the doctors for far too long, like a couple of years at least
I had a depo last Saturday, currently off DMARDs since before Xmas, and it took a while to kick in but I'm now feeling the best I have in a long time. It might help for you too? Try not to fret, I know its easy to say but as my GP would say, need to get a bit more zen!
Take care Sara x
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Rank: Advanced Member  Groups: Registered
Joined: 10/3/2011 Posts: 31 Location: Kettering, Northamptonshire
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Hi Naomi My joints do that too. I will be walking and then #@*%&!!, my hip or knee or ankle goes and I can't put any weight on it? As if RA isn't meen enough, it also like to play the "Pain Surprise" game! Big hugs! Amy xXx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Naomi, I suffer the same . Walking reasonably well, then a knee , ankle gives way and the shooting pain is horris VERY sharp. Also wrists and fingers when gripping. I also get these sharp pains anywhere in the cheeks of my bottom my feet - anywhere. I use a stick as I feel if I don't I am liable to end up on the floor and then get broken bones. I too could join the 'pain surprise ' game. I though you would have got more answers  Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Me too!!! It b****y doesn't half hurt!! I am lucky in that usually I have a pushchair to lean on, but when I'm out without it, I do worry. I fractured my ankle last year, so now its even more of a concern. Lets hope someone can tell us what any of this means BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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I get it too. I think it's due to muscle wastage, so the ligaments have no support and then can't support the joint, something like that. We need more physio.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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and me,hate the game really,don't half get some funny looks though,i have learned to have a silent giggle at myself after it eases,thank god for my walking stick,did grab what i thought was my friends arm once in a shop,it was'nt,it was a man's, i just smiled and moved away whispering sorry, my friend just shook her head at me as per.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello Mine are a bit beyond this But they used to My ankle thingy of a light air cast ankle support has helped Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Naomi As Doreen says the most likely cause is muscle wastage and problems with the ligaments. Hence the reason why gentle non-weight bearing exercise (and physio) is so important in RA. Swimming is ideal. I am surprised that you keep reading about most joint damage occurring in the first year. I would be interested to know where you have read this! Bone/Joint damage, by its very nature, occurs slowly except in extremely aggressive disease. This so rare with patients diagnosed in the last 10 years or so due to early treatment. At the outset, 24 years ago, I was mainly on anti-inflamms, pain relief and steroids, no DMards. Despite being seriously ill for the first two years it was a good 5 years before there was evidence of joint damage. Hope you have success on your new treatment. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi I think there's some confusion over the importance of early dx and starting to treat to try and prevent joint damage and there being actual damage within the first year http://www.aircast.com/i...ducts.detail/cat/1/id/6
Is the thingy I have for my ankle Some people with very severe aggressive disease will show X-ray stuff but most it's going to be soft tissue damage and thats spotted on ultra sound MRI and examination Those things mean that lots of the permanent damage can be avoided ahead of time. That's why they treat hard and fast. The evidence seems to suggest people treated hard and fast do better longer term. Jenni how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks for the replies everyone. Lyn, reading your post was really reassuring so thank you very much for putting my mind at ease. I can't recall where I have read about the damage occurring primarily in the first year/2 years but I know I have read this numerous times. If I come across it again, I will post a link on here.
I looked at the ankle air brace Jenni and I will keep this in mind for the future, Currently it is my right hip, right knee and both wrists that give way. I find the wrists splints given to me by the OT help. I was advised to use my stick to take the pressure off my knee but this is quite difficult because the stick hurts my wrists and hands and also my boss would not let me work whilst using a stick. I know this from a colleague's previous experience. He was forced to use a wheelchair.
One last thing, I just wanted to thank all the people who have replied to my many posts over the last 6 months since my diagnosis and a special thanks to Jenni for replying so many times when I know how desperately ill you have been and to Lorna for speaking on the phone. This has been one of the most frightening, lonely, painful and distressing periods of my life and it has affected me very badly on an emotional level as well as physical. I am having counselling now to help me come to terms with it all. I honestly don't know what I would have done without you all so a heartfelt thanks for your support, advice and wisdom. Best wishes from Naomi x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Wey hey! Naomi Fancy wearing one of these with me? http://www.physioroom.co...st_Op_Bracing/3336.html
It's a thing of beauty! It's good though... how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Naomi re the stick I have Fischer handles on mine bought through switch sticks I can't hold it though and drop them So have a Zimmer frame (I can see you horrified) I have called my frame Frank I use him inside Outdoors well it is the chariot I have a couple of power chairs And one push along little one The first one I bought was a little push along one- no point in self propelling as I couldn't use it I had it in the boot of the car About the same time I started the ball rolling for stair lift My union bought that Its a huge thing getting your head round stuff and having limited hope, stuff imposed on you etc Im home in bed so pleased to be able to help someone! Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks so much Jenni. I think one of the hardest things at the moment is all the uncertainty. I can't make plans as I honestly can't predict how I will be next month, let alone next year. It's just one of those things I am going to have to take on board though in order to navigate my way through this horrid disease and the complex treatment surrounding it. You certainly ARE helping me from your bed at home. Thanks for letting me draw on your experience. I hope you are not in too much pain. Do you have a blog or Vlog I could look at on line? I would be really interested in following your story more closely as you are such an inspiration. That sounds really CHEESY but I mean every word. Meanwhile I hope the pain is bearable for you at the moment. I can imagine how important your computer is to you right now as I know how much I rely on mine to help me access support and keep in touch with friends when actually doing this in a physical sense would be so difficult. Best wishes X
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Naomi, my knee surgeon told me the best way to prevent the knee giving way is to strengthen the quadriceps. He said an exercise cycle is a good way to do it.
Doreenx x
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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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hello everyone
I have the same thing happen to me and i agree when you are in a shop or on the street and it attacks you go hooo out loud people look at you and think hey we have a nutter here but just give them a knowing look and walk on, i too have cruches and sticks it depends on how i feel in a morning as to which i use but to go shopping etc i use a buggy. Now on a positive I have been to the physio and she has started me on massarge i have only had 2 sessions but it does ease the pain a little so heres hoping it will work and has you are going to see the Doc why not ask him if you can try it may or maynot work but as i say i will try anything once.
hugs and cuddles to you all
Audrey
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks Audrey and Dorat. I have been for a physiotherapy assessment and was told that I am too inflamed to do any proper exercise right now except for bending forward and letting my arms swing back and forth, side to side and around (for the shoulders). I am due to go again in 2 weeks and it is hoped that the inflammation will calm down enough for them to give me some more exercises. He is going to look at my Xrays in the meantime. I think I will feel better once I have some exercises to work on as at the moment I feel there's not much I can do and it's frustrating.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Naomi1 wrote:... I think one of the hardest things at the moment is all the uncertainty. I can't make plans as I honestly can't predict how I will be next month, let alone next year. Hi Naomi I think this is one of the most common problems people find when diagnosed and it can become so easy to fall into an attitude of "waiting to see". With a disease as unpredictable as RA I have found that you do have to be one step ahead otherwise the disease really will control you. Make plans, they can always be cancelled if necessary, you stay in charge, you call the shots. I know you may think that is easy for me to say but over the last 24 years I have realised that adopting an 'I can' and 'I will' attitude has been what has kept me positive and able to do as much as I have. You will get there, believe me! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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Lots of love Naomi... Sorry I have not been around. But have been thinking about you. I really hope things start to settle for you soon and the inflammation levels go down. Totally understand how your feeling right now. Please take care of you. Love Belinda xxxxxxxxxx Treat others how you wish to be treated!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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Lots of love Naomi... Sorry I have not been around. But have been thinking about you. I really hope things start to settle for you soon and the inflammation levels go down. Totally understand how your feeling right now. Please take care of you. Love Belinda xxxxxxxxxx Treat others how you wish to be treated!!
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