Do any of you use walking aids? If so what do you use to help?
And any other aids that help you at home or in every day life that makes things easier for you
I’m at physio today so going to ask as I’m struggling standing or walking very far but I’m embarrassed to have to use anything as I’m only young
I've got a small desk chair with the bk off so it's like a stool and it's got the little wheels so you can wizz round in any direction my son did the heavy stuff and I just put a bit of wd40 on wheels I'm 70 and I love it 🤗
Ps as long as you've got wooden floors or tiles it just takes strain off my bk as well happy wizzzzzzzzing bur be careful with oil
I've got stick but not needed at the moment also have grab rails in bathrooms and at front and back door which are a great help, I also got a device to help putting socks on a great but simple piece off kit xxx
I just heard a stick can put pressure on the opposite side and both my hips and shoulders hurt just wondered how others manage?
Yes they do and I only use them as a last resort
Thanks just looking at options and this might just help for short use at supermarkets etc or queuing
Although I struggle to walk I don't use aids - my hands and wrists are bad as well so walking sticks are of very limited help. Do have a wheelie shopping bag to lean on at times and always use a shopping trolley to lean on. Other than that I try to walk close to walls so I can lean on them when I need a break. I've refused grab rails - when you can't grab they're useless (but cheap so they're usually offered to keep us quiet). I've stopped being embarrased - when I stand still no-one realises I have any problems and I look pretty good otherwise and the one thing about strugging to get up is that it's not always possible to get meals and snacks so it's not too hard maintaining a good weight.
Re standing rock both feet on the floor until I can tell they aren't going to fail me - then rock forward and lift upwards at the same time. Then wait a few seconds for the pain to subside to stop you blacking out. Hope that helps - all my OT would say about the problems is that nothing would help me, I didn't qualify for anything and my problem getting up was because I was "anticipating the (inevitable) pain".
Have you tried a dressing stick if the sock aid helps it might be an idea to look at them (you can even get from Amazon nowadays)?
Thanks it’s more the standing still ie queues and if I feel faint with pain I’ve nothing to rest or sit on. I’ve just heard sticks aren’t good for the opposite side of the body as my pain is both sides.
I recently fell down the stairs tried to grab my bannister and ended up pulling all my shoulders making my bursitis worse.
There are several walking aids, it’s a big thing to accept you need to use them...especially when you are young. I’m a physio and don’t use a walking aid myself, but do issue then to patients...But if it increases your independence then maybe you just need to do for it.
Have a look at the following:
Four wheeled walker, has a seat so you can rest.
Delta frame three wheeled walker.
Gutter arm rest walkers which takes the pressure off your wrists or “Fischer” handles which are shaped.
There’s lots to look if you google it...big price range too...can you get your GP to refer you to a physio so you get it on NHS...? hope this helps.
Thank you that’s great information
Ive got a few walking sticks . Generally cant walk unaided and I do hate using them, however people are very patient when it takes a while to get sorted ie at shop till. I have starting collecting sticks to match what im wearing. I also have one with a seat, it is a bit heavy but handy if going somehere there may not be seating. Its not very elegant to sit on but does the job.
Same as LancashireRachel with regards to walking sticks. Not sure one would be much help even if I could use it. I used to have a lot of trouble standing due to bad knees so bought a riser/recliner chair, which though expensive...ouch!, has been a godsend. Even now with my RA under reasonablish control if I don't use the riser for a time then I can feel my knees starting to play up again. I can't bath so have a walk in shower with hand grips. Have replaced twisty type taps with lever operated. Extra hand rails on stairs, which do help keep me steady, but would not stop me falling if I suddenly trip, slip or whatever. Like popsmith, I also have a device to help me put my socks on, it's called a wife! 
Just kidding of course. Seriously, my wife is an absolute angel who's helped and supported me through some really rough times, and I'm talking about time periods lasting years . I don't know what I'd have done without her.
Sorry that you're having problems at such a young age. Not sure how long you have been like it, or what your current situation is, but hopefully you can get on some meds that work for you and you won't need many of these aids.
Thanks tbh it’s the pain. I’m burning up and feeling so sick. I’ve had physio today and after my assessment last week and seeing my rheumy at hospital I’ve realised any kind of movement is agony and getting worse every day and I’m getting quite weak.
I’m surprised just how much this is impacting on me each day and getting worse since just October. I must be going through a big flare but it worries me.
Some of my symptoms are for more advanced stages of AS and I’m worried.
It surprised me too with how fast it went from my feet and knees aching after a long walk in the hills to a full blown flare where I had difficulty just moving from room to room....unbelievable! Just hope you get some relief soon.
What does AS stand for?...obviously it's not good.
I’ve had ongoing symptoms I just didn’t realise what they were but they were manageable. Then in October at my 6 month rheumy appt I had an injection in my hip for bursitis and I’ve just gone down hill big time. I think I had mild bursitis a year ago and a physio didn’t pick it up I thought it was just exercising. Now I know differently.
AS is ankylosing spondylitis
You can probably tell by my above post that I've been through some rough times. For a long time I thought there was no chance of improvement and I would continue to go down hill. Fortunately I had a really good rheumy who persuaded me to try a new med on the market (I was reluctant at first) and things have picked up since I'm relieved to say.
Really hope things start improving for you too.
Thanks for enlightening me about AS.
I use hiking poles.
I have those too just in case. Psychologically, I don’t feel that I’ve turned into my Mum and they’re a very funky 🍊 orange
Yes they are good because it gives the illusion (in my case!) That I'm a fit hiker. They're actually holding me up! 🤣
Exactly! And they’re mega lightweight too which is a bonus
And foldable! 😁
I have crutches walking stick which because of my hands I can't use as it's so painful . I have a jazzy shopping trolley for going out it is really fabulous for dumping stuff in but I can lean on in if I need to . I must confess I won't go anywhere on my own if it involves walking and I don't know the terrain . When I was working if I was sent anywhere for training I used to go the day before and check everything out so I would know I could pace it out . I have grab rail on back door as I popped tendon coming down the step . I do understand how you feel but I won't allow this bloody thing define me so if I have to use a stick I will but I'll do it my way and with glitter ✨
Would you consider using a ‘rollator’ or 4 wheel walker as sometimes referred to? That would give you equal support on both sides, as well as a seat to sit on if standing for any length of time. I know it’s the type of thing you might associate with a much older person than yourself, but sometimes needs must...
I’m just not sure I could face it. I know it would help though. Tbh think I’d rather be in a wheelchair but that would be a last resort
I do know what you mean - it’s somehow like admitting defeat, and can really dent your pride, and your sense of who you are, that you are somehow defined by whatever means you need to get about. But at the end of the day, does it really matter what others, especially strangers, think as long as you are safe and not creating more pain for yourself? TBH, I can probably only say that with the benefit of advancing years, as I no longer give a stuff about what other people think, but I do appreciate that when you are younger, it’s a lot harder to not feel that everyone’s looking at you and judging you. Just bear in mind that other people are mostly too wrapped up in their own lives to be bothered about whether someone is using mobility aids. I’m sure you’ll do what’s best for you.
I think it’s not what other ppl think but how I feel. I don’t want to look or feel like a cripple. I don’t want to be sick or look like I’m sick. I just want my life back
I felt that way too and at first it was difficult especially when I met people I hadn’t saw in a while. I couldn’t use sticks as my hands and wrists were so sore but I did get a rollator over 2 years ago and wouldn’t now be without it! It’s given me some independence back. Mine is decorated with stickers of places I’ve been and the kids have put little stickers all over it too!
The world didn’t stop spinning just because I wandered outside with a wee wheelie and I got used to things pretty quickly. ((hugs)) M x
My dad has just bought me one of them self folding electric scooters! Folds up super small for the car, it’s great! I’m only 36 but I make the most of what I can do when I can do it! I go the whole hog and wear a jumper that says “chase me” on it! If people want to stare they can! Living with Spina Bifida since birth and now RA someone staring at me is the last of my worries. I let to many ppl take the mick out of me from child hood even to adult hood they can now eat my dust when I’m happily Zooming around! Hope you get some help.
monarchmobility.com/solax/m...
That’s the one I have.
Hi Infeel like you About the walking stick but belief me nobody takes much notice
I use two NHS walking sticks which have really good handles they are brill and make me walk upright instead of bent whic is how I am without them
Care about yourself not what you look like it’s you that counts xxlol Jean
MissFG
Hi there, many of us on this forum use walking aids. I use a 3 wheeled walker as it is so easy to rest my weight on the handle bars, I also use it to get my breath back as I can stand up straight rather than just sitting down. Can't get on with the 4 wheeled version it's more cumbersome. Many of my other aids came from my local palliative team who delivered & set them up for me (Can't speak highly enough of them) I've got a raised W.C. seat, a W.C surround frame, various 450mm long grab handles scattered about the shower room. Also got a perching stool which is handy to shave or in your case probably put on make-up.
I also bought an electric scooter & a car that takes it up a ramp, it all means I can get about but no way as fast as I used to, I also went mad & had the bathroom changed around to fit in a "wet room" means I can have a wash down holding one of the grab handles & wash my own hair but I still find it easier with a carer as they can move around whilst you stay static.
I don't like any of it & will have to live with it for the rest of my life, but all is not lost and I remain positive, I've got it so live with it or around it.
You are not alone in your situation, people here have their own ways of coping & I'm sure some of them will give you some other tips.
IKeith
Yes I’ve had social services out and they offered me assistance if I needed any aids. I turned down the hand rails as I rent so didn’t want the damage to the walls if needing removing. Now after falling down the stairs I’m glad I didn’t as grabbing onto the handrail pulled all my shoulders and arms.
They recommended I move. But after giving up so many aspects of my life I didn’t want to lose my home too. Plus I just don’t have the emotional or physical strength to pack up and move.
Do you think it’s worth getting back in touch to see what walking aids they might have?
MissFG
Hi again,
Yes I do think you should get back in touch, I've had grab rails fitted in wet room so I cam get off the W.C. and stand under the shower to get a wash down, damage will be minimal 6 holes per grab rail which can be cleared up with a bit of grout, also had a few fitted outside so I can empty the waste bins. The mainstay is the walking frame, not a zimmer they trip you up and are less adaptable, but a 3 wheeler that also folds to suit widths you are trying to get thro' + it's help to stand upright to get breath back. Raised W.C. seat makes sitting down so much easier & getting up as you are that much higher. The perching stool is fantastic as you can have 2 hands to do things, for me it's shaving, for you it's probably make up. I've also got an electric scooter which I bought myself together with a car with ramps, the ramps can be obtained separately. I also got a hospital bed supplied by the palliative team, I have to sit as upright in bed as possible to try to keep the chest free of too much mucus, it's initially un-natural but you do get used to it, it's all electric so I can get it to the level I wish to get out of bed & just swing the legs out.Please try them again to see if any of these aids can be made available to yo, with them it helps me get around. Oh I also have an arm bracelet for emergency contact with a central station which with a key they can access my property to get me sorted.
They are a very good organisation (at least down here in Brighton) without their help I would most probably be bed bound or house bound, Keep at them.
IKeith
Sorry you have to go through this while you’re so young. I’m 73 and hate it anyway. But I use a fancy cane when out even when it’s not a bad day just in case. Walking at my granddaughter’s cross country events, I’ve used my walker because I have to sit often and it is the type that has this feature. My son will be visiting for my bday and Christmas next week and my daughter wants them to see the lights at the zoo which is beautiful but I’ve been thinking of opting out because I’m always worse the end of the day and the way I e been feeling I think I’d need to be pushed around in a wheelchair and I don’t want that because they really have no clue as to how bad I feel. I hope you’re on a good med that’s helping you. I was doing well til I had to come off my MTX to take an antibiotic and now I’m worse than before. So disheartening. But please use what you need to help yourself continue to go the places you want and should go to. Prayers they find something new in the new year. 😊 Please stay positive.
Thanks BonnieT
I’ve only been recently diagnosed awaiting a full spine & SI mri on New Year’s Day.
Once my rheumy has seen how advanced my AS is he’ll decide on what treatment is best although he says he’ll inject my bum straight away to help me with the pain and bursitis I have in both hips.
I’m hoping for a steroid injection in one of my shoulders as the bursitis is really bad and so painful.
I’m concerned as I’m late getting a diagnosis and I have symptoms such as vertigo which is usually in the advanced stages I’ll need aggressive treatment. Plus wha the long term implications it might mean for me.
However if I went to a shopping centre and was struggling I’d get a wheelchair although tbh I order everything online so don’t have to walk too far.
I’m keeping positive just upset at first over the weekend when it hit me but I’ve been ill for 3 years so I know how to bounce back when I get down. And forums like this and kind words like yours always help x
I have As it took over15 years to get a diagnosis in the intermediate time I had completely buggered my lumbar discs l5- ls1 are all herniated . Nearly two years ago I couldn't walk had to give up work , but still had no diagnosis thankfully my X-rays showed the inflammation the MRI didn't in my pelvis . Going on to Humeria gave me back my life there's still a lot I can't do but I'm counting all my blessings . I remember when this really started to impact on my life was when I was pregnant with my son he's 17 now and when he was three I had a car accident. This became the trigger trying to pick him up was a no , I was embarrassed for my kids picking them up from school but someone reminded me that they love me . So be kind to yourself you can't change the diagnosis but you can prevent it ruining your life by changing your mind set . Wish you well 💐
Thank you for your kind words. I will feel better after the mri I’m just worried for the results.
So the X-ray showed more than the mri? Thought it was other way round?
So even if my spine and SI joints are damaged will medication and physio help? I know the medication will help inflammation and try to prevent any more damage but are you now on painkillers and drugs for life?
I was told to walk as much as possible to keep the movement and to be honest I'm better if I keep moving I might not look great with the limp etc but if I sit I can't get up my pelvis locks , please try not to google as that is not helping . In another note after having this diagnosis another rheumatologist has just told me I don't have it so 😭😭
Sorry I was short my days not been great . I had a load of procedures facet joint epidural burning out discs . So many pain killers morphine patches gabapentine tramaldol and god knows what else . Thankfully I then had a doctor who looked outside the box stuck me on a high dose of steroids and it was like Christmas came . She and the rheumatologist then worked together and I test zero negative .inflammation in si joints showing on X-ray . I had had so many symptoms as a teenager ,both sets of parents have ra . It is hard to not worry but at least you will have the right treatment offered you I can honestly say the biologics changed my life . Good luck . Don't be to hard on yourself and I'm truly sorry for being brusk xxx
Here’s a bright note for you. A psychologist told me to have faith because RA goes into remission, sometimes for years, for a lot of people but usually more often for the younger patients. 😊 I also heard that if it does go into remission you still need to take the meds. I have no proof to offer however. I will keep you in prayer. Hugs.
Hiya MissFG. I have a walking stick supplied by Occupation Therapy which I use on my Indy day, the days when my balance isn't so good, or I'm tired. Similarly I use my Blue Badge when things aren't so good.
I also have a couple of perching stools, particularly helpful if I'm needing to be in once place for a length of time. The one in the kitchen is being well used at the mo because I'm without a dishwasher until the the renovations & extension in our home are complete & the new kitchen is installed. Working with a lot smaller kitchen than we had!
I also have a miscellany of OXO Good Grips (Softworks) products from pop lid food containers to a rocker knife. It's a really helpful range.
I understand why you'd feel embarrassed using aids to help you but that's what they're intended for. Maybe try the odd thing privately in your home, it might help when or if you use them in the outside world. It sounds as though you'd benefit from having a stick, just don't do what I found myself doing yesterday & start pointing with it, I suddenly became my Nan for a minute, heeelp!! 😱
Thank you xxx
Hullo MissFG. I have a seated walker by me, which was invaluable when I was in a lot of pain. I didn't mind at all 'what it looks like' because it allowed me to keep going out & about. I did take the backrest off to neaten it - and found it parked very slickly in the bike rack at work! I became very fond of it altogether, and it was extremely useful for putting shopping/library books under the seat. I will have no qualms about using it again in the future when need dictates.
Go for it with whatever it takes!
Aids to help
Slippers and other aids.
Mobility aid
Cleaning aids?
Aids for cleaning skirting boards etc?
