Why do you need a wheel chair when you have RA?

I hope this question does'nt seem weird. I was just wondering is it damage to the knee joints or the ankle joints or the hips, or is it just a combination of everything? What causes RA sufferers to require a wheel chair? It seems many of us are in wheelchairs, did it take a long time with RA out of control? or was it inevitable from the start?

Gina.

15 Replies

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  • Hi gina

    I have used a wheelchair since early summer when the pain in my knees got Si bad I could not put weight on them.

    My RA is out t control as you've most probably seen from other posts.

    I'm not sure about others I just know mine is because the pain is too much.

    Take care

    Marnie x

  • Hi Gina, it's not a daft question at all.

    I use one when I'm going to be on my feet for a while i,e shopping in large stores or in the town centre as I can't stay upright or on my feet for long. I have A.S and widespread Enthesitis, the pain in my back/hips and legs becomes unbearable in a very short space of time then I start falling over.

    I'm not sure about the others but for me my consultant told me at 32 I'd be in a wheelchair by the time I was 50 and........ hay ho... I'm coming up to 53 and still get around on my own albeit short distances (touch wood and fingers crossed).

    Beth xx

  • Thanks for answers, the reason I was curious because, I was wondering if I had not had the arthrodesis on my ankle would I eventually be reliant on a wheelchair. I am scared at the prospect. I am using one myself at the moment around the house. I also know my other ankle needs surgery, I was sort of thinking if I did'nt get this done would I eventually be unable to walk, or might that happen regardless of what I do anyway.

    The surgeon told me post op that I have a very agrressive form of RA. It is controlled by Humira & Mtx as far as blood tests go. No one will guarantee that this is so. I don't think they really know......

    Gina

  • With any form of Arthritis sadly they can't know and the meds are trial and error, what works today may not work next week.

    At least there's ongoing research and hopefully one day they may have an answer for patients with Auto-immune conditions. xx

  • But a wheelchair isn't inevitable. My mum (who died in 2003) had ra for about 50 years. It was only when she was very frail and old she needed a wheelchair, and then it did give her a lot of freedom. Her ra wasn't well controlled.

    But as Beth says this condition is unpredictable and we just have to make the most of what we can do now I suppose.

  • Hi Gina,

    Great question!

    I use a wheelchair and have done since the early days.

    My doctor got the ball rolling for me.

    I had gone to see him and he asked me while I had cancelled my previous appointment three days earlier.

    My reason was on the previous Friday I decided to walk on my crutches to the corner shop ( crutches or now sticks are due to knees giving way pain and to many falls to risk more) it was a journey that pre ra would have taken no more than ten minutes that's including having a chat in the shop. I struggled to make it and by the time I got there didn't feel like a chat I got my paper and set off back I was taking one step stopping for a minute and then started off again.step rest etc. It took me well over an hour and tears streamed my face.

    The pain was so bad in my hips. Knees ankles and worst off all my lower back and I ended up bed bound for three days in agony and this weren't the first tIme this had happened.

    My doctor said I think we need to get you a wheelchair!

    I was gobsmacked to say the least!

    But he did all the paperwork and got everything moving.

    Then explained to me that as my disease activity was so high then that's why the pain and fatigue were so bad and that if I used a wheelchair while out then it would give me a better chance off pacing myself and ease the pain in my back which is from degeneration.

    It took about 2 weeks to receive my first chair but as.my hands and wrist have ra damage also my doctor had applied for an electric wheelchair also this one took around six months to receive.

    And omg the difference its made to my mental health is unreal.

    I don't always have to rely on others.

    I still hobble about the house to keep my legs moving but I no longer need to suffer like I did.

    Take care

    JUlie

  • Hi Julie. Hope you dont mind me asking but you say your doctor applied for you to have a wheelchair. I thought we had to go and buy our own. I am getting so bad now really need to have a wheelchair for some of the time.

  • Hiya loveletter & welcome to the NRAS site. I'm afraid you've replied to an old thread & this member has deleted her account (or has changed her username, either way she won't receive an alert to your question). If I may answer your query....

    My m-i-l refused to use a wheelchair but she did have some walking aids & adaptations around her home provided by the NHS, arranged by her support team in her case, this link may be helpful to you nhs.uk/Conditions/social-ca... If you're in receipt of enhanced rate PIP or if you're still receiving DLA at the higher rate, both of which entitle you to Motability it should be straightforward.

    Good luck.

  • Hi Julie,

    After this operation on ankle although only temporarily off my feet, I too cried when someone lent me a wheelchair, it was so liberating. I am really not able to go very far on crutches, I can almost feel my wrists and shoulders degenerating!

    Hopefully, this op will give me some time, It has put unreal pressure on my 'good' knee and ankle.

    Good lord, I am glad no one told me 3 years ago that this was ahead of me. However, I can only be positive and hope that the Humira is controlling the progress of the condition.

    The really amazing thing is the speed and agression of the disease in my case.

    To be quite honest it really only came on over a max of 6 months and then about 18 months until it was 'controlled'

    Oh well onwards & upwards hopefully the xray on the 29th will say bones are fusing nicely. I can't bare to think of the alternative.

    Will blog again soon, hubby taking me for a drive (like you would your nana)

    x Gina

  • Hi Gina

    I agree the pressure it puts on your good side when you have to be non weight bearing is unreal, with me i don't really have 'a good' side any longer, but more so a 'operation side' when i have had to have ops, but in the begining of 2012 i am going to have to have 2 big fusing ops on my ankles and due to the pressure you have to put on 'the good side' i have been told to use my wheelchair even around the house to avoid the pressure on those joints!! I am freaking out about this and don't want to be wheelchair bound forever, the doctors keep saying it is 'defered gratification' as the crap 6 months having them both done will mean a great ????? amount of walking years ;-)

    Ella x

    PS I am sending your bones good fusing vibes ;-)

  • Hi Ella,

    You are getting both ankles fused at same time? In retrospect I wish I had that option as I will have to go thru this all over again with the 'good' (as bad) ankle.

    The good thing is its not painful, the bad thing is its deadly boring & depressing! Hopefully in the longterm it will be worth it. Actually, it seems to have healed up great no problems and minimum swelling to date. might be different story when I put weight on it, but sure I'll cross that bridge....

    The wheelchair is a blessing around the house.

    Gina.

  • I use a wheelchair out of the house simply because the pain in my knees, ankles and heels , when walking, is unbearable. I have only had RA for 18 months.

  • Hi there!! Personally. I would have a wheelchair because of my RA simply because it hurts. I'm a 16 year old who's had to deal with the pain of RA since I was at least twelve. By this point in my life I can barely get out of bed and I'm too young to have medication to slow its progression. I used to be super active but now I can't stand up for more than a few minutes or sit without something to lean on for more than maybe half to one full minute. I cannot have a wheelchair because I live in a camper so it's very inconvenient. If I could though I would definetely choose to have a wheel chair. The looks I get in the store when I Hyatt cannot stand anymore and my parents aren't close to done looking at something and so I sit on the floor are annoying. A wheelchair would personally make it better for me when out and about. I wouldn't have to worry about 'oh. Maybe I should bring my knee brace' (because that actually eases the pain sometimes believe it or not.) but instead is just get to sit and not feel barely any pain at all, except maybe in my elbows from pushing the wheelchair. But that's bearable. It's not that bad in my upper body yet.

  • Oh my, you are only 16? Howcome you aren't able to have medication to stop your RA?

  • Hi!! This may be silly, but I made an account just to reply- I'm 18 and in a similar medical situation! I came here because I am considering a wheelchair, as I finally have my own apartment, but am reliant on my partner, and would like to be less. I'm so sorry for what you are going through, but know you are not alone in this world, and even if the body isn't always improving, life still can! <3

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