Open to all : The title says it all anyone and everyone... - NRAS


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pat66 profile image

The title says it all anyone and everyone on this wonderful website is encouraged to please respond. I have put up a couple of posts before and the response's have helped alot. So I have RA And AS so I take tramadol and naproxen. I am young and have a young family and often feel people don't believe the pain I am in,or because I am walking "funny" or using the lift in a two story building I am being "lazy"

( sorry I don't have a badge around my neck informing YOU of MY disability!!) Sorry about that but I am sure you have a good idea of what I refer.

I have been thinking of this for awhile and truly believe that I would enjoy life more so here it is

My question is this purely for myself and my pain management .At what age is it socially acceptable to use a disability scooter? I look forward to seeing what you all have to say and thankyou in advance for helping me make up my mind.

29 Replies

I hope you don't take this the wrong way, but this does seem an odd question to ask. If you need a mobility aid, then surely you need it whatever age you are? After all, they make ones for little kids. It's sad that there isn't more understanding about disability, but I think it's socially acceptable at least? if you feel it would improve the quality of your life, then that's a reason to me. Although do remember the "use it or lose it" school of thought as exercise is important for us, so you do need to keep as mobile as you can.

Your post also made me wonder whether you need to think about different treatment as well if you are only using tramadol & naproxen? Is there a reason you're not taking the disease modifiers, as if you can get your disease better controlled then perhaps that would help too? After all the potential long term effects of the drugs you're on are just about as serious as potential effects of the disease modifiers.

pat66 profile image
pat66 in reply to helixhelix

Thanks for responding I will look further into that mods

I'm a little confused. Do you only take tramadol & naproxen? I ask because if you're not being treated with disease modifiers or anti TNF's/biologics that would be my main concern, my priority, to get the disease under control, work on your symptoms & have no need for a mobility scooter at this time of your life. Gosh, I wouldn't want to think about that for a long time yet, if at all so if you're not being properly treated please do ask your GP for a referral to Rheumatology or if you already have a Rheumy do request an appointment to discuss an appropriate treatment plan (I would think you do if you have diagnosis of RD & AS). It can't be much of a life relying on pain relief & an anti inflammatory, if I understand right.

Just for reference, Naproxen (or any other NSAID) is actually a first line treatment for AS, and DMARDs don't actually have a disease modifying effect on AS (though MTX or SSZ can sometimes have a bit of an effect on peripheral disease),.

I agree though that if Pat is at the stage of thinking about needing a mobility scooter, then the disease isn't under good enough control and it would definitely be worth having a serious talk with the rheumatologist about eligibility for anti-tnfs (which has different criteria for AS than for RA) or other treatments.

However, when it comes down to it, if you need mobility aids then you need them. It may be embarrassing the first couple of times to be seen out in public, then it gets totally natural. If you get your own scooter, then you can pimp it up a bit too to make it a bit more "you". Just watch out that all your friends don't want to have a go on it - especially when they have had a few.

Thanks for correcting me, though I was covering all bases. I know Pat has questioned both DMARDs & anti-TNF's before & was attempting to establish if the two meds mentioned are all that's being offered.

Agreed, if they're necessary there's no age limit to having or needing a mobility scooter but if the conditions aren't being adequately treated then there's the hope it wouldn't be needed, especially taking into account his age & being a dad to youngsters, as opposed to becoming progressively worse due to being left undertreated. It could well be he chooses not to take anti-TNF's, it's his prerogative.

pat66 profile image
pat66 in reply to nomoreheels

Yeah at moment just pain killers not so much for the biological but I will investigate

If you feel you need help to get about then get the scoter. Don't let pride get in your way of a better life. Yes there are times when you feel you can walk then walk,but if your finding it harder to get about then use the scooter. xxxx

pat66 profile image
pat66 in reply to sylvi

Thanks I think you are right I am going for it to help keep my sanity

Whatever age you feel the need for one would be my thought. I have also been thinking about a scooter too as I am finding it increasingly difficult to walk.

pat66 profile image
pat66 in reply to Someonesmother

Great lets start a revolution scooters for all thankyou for replying

Someonesmother profile image
Someonesmother in reply to pat66

I think for me it is the fact that I am still not having much pain control or much benefit from enbrel, so walking any distance is hell for me and if I could afford one I would buy one. I work full time and regularly have to walk from my building to another building at work. what takes most people 5 minutes takes me about 20, and the cost on my body is huge. I think it depends on how well your disease is under control as to how you may view the use of a scooter. For me while there may be days I feel reasonable, I have more days where I feel so awful that walking is just too hard.

I feel the same nobody can feel the pain we are in or understand why we might walk funny or struggle to get out of a chair. I regularly think I am getting like my grandma although she was a good 20years older than me when she struggled but people accept that at 80 you will. I have a mobility scooter and it gives me piece of mind and I can do the things I want to do no matter how I am feeling. It does not matter what other people think. Hold your head up and enjoy your life and your family and if that means having a scooter, start looking for one now.

Patsy 57

pat66 profile image
pat66 in reply to Patsy-57

Thanks for response I am looking now

18 months ago at 47 I bought a scooter and it saved my sanity. We were struggling to get my disease under control and my mobility was severely affected. The family were saying 'we will not do that because Mum can't manage' so I took the plunge. It is not nice having to use it but if that is the only way you can get out and about and have some sort of life you have to bite the bullet. Since then I am now better controlled although still not properly and have had a knee replacement so for the last 4 months I have not had to use it. Do some research first as there are a lot of different models available. What is the main use - pavements or rougher ground, does it need to come apart, can you lift it in the car, sitting position (with many your knees are at 90 degrees which I could not do). If mainly just around town I would probably go for as small as you can manage as the aisle in many are small and it is easy to take a stand of clothing with you!! If you have a local shopmobility in your shopping centre I would hire several different ones out and try them around the shops it gives you a better opinion of them than trying them in the scooter showrooms. Farm

pat66 profile image
pat66 in reply to farm123

Thankyou for you reply you seem to be where I am at

It's a very personal thing. I'm 71, but quite determined not to use a mobility scooter yet. This isn't vanity, but awareness that once I stop using my muscles for walking , they will become weak. Then I will have no choice. I do have a wheelchair, but when I use that, it is largely for the benefit of whomever I'm with. I'm Tediously slow when walking. We took the chair to Kew Gardens last week. For some of the time, I was pushed in it, but at other times I used it as a Zimmer.

In your situation, I would definitely be fighting for better control of the disease (s) before buying a mobility scooter. Yes, it might be liberating, but at the same time, it would reduce your freedom of choice. I wonder if you have bee assessed by a physiotherapist. Jora

pat66 profile image
pat66 in reply to Jora

Thanks for your response

I am 48 years young . I was diagnosed with RA and PA . Almost 4 yrs ago . I have been on several meds to help slow the Progression of this disease . I try very hard to stay active . But , yes I have noticed that it's harder and harder to rise out of bed or stand up from a squatting position . Climbing stairs are a task . I love gardening . It has become a hard task as now I have spinal problems . Getting a Scooter is ones choice as " Asking yourself " ??? Do I really need this ? And your doctor should be putting you on something to control your disease and not just the pain . Scooters were made for a reason ... To Help people with Mobilty problems . But , as They say Don't use it , you lose it . This motto I try every day of my life . With Pain and Struggle especially when I have severe Flare ups ... I wish you all The Best . Try to stay mobile as you can . This disease is very hard for anyone that doesn't have it to understand how painful it is .

pat66 profile image
pat66 in reply to SandysOk

Doing the meds but will try biology treatment too but peace of mind is swinging to getting one thanks for replying

helixhelix profile image
helixhelix in reply to pat66

Pat, have you thought about phoning the NRAS helpline and talking through your medical treatment with them? I can understand you might be worried about different drug treatments, but just taking tramadol and naproxen for rheumatoid arthritis doesn't sound very good to me.

You're young, and if you're already thinking about a mobility scooter that's worrying. So things that slow down the disease rather than just treating the pain might be a good idea. And the drugs you are on can have serious long term effects, so I hope your doctor is keeping an eye on that? I would really urge you to talk to your rheumatologist about other treatments, not just the GP as they aren't specialists. It's your choice what you take of course, but you should at least know what the options are for you.

I have RA and a lung disease and have used a class 3 mobility scooter for about 15 years. I got it when a 10 minute walk was taking a painful half hour and I could not ride my bike because my hands didn"t respond quickly enough on the brakes. It is draining coping with pain, using a larger scooter to get to the shops and then walking in the shop is what suits me. I use the stairs rather than the lift whenever I can. The range and scope of my scooter means I don"t need the car so much it is so much easier to park at the door with the scooter. I was always an outdoor person and I can use the scooter to go for walks in the country with my grandchildren. The only life style choice as far as I can see is to sit at home and mope or get on with life and not worry too much about what others think. I am on Rituximab, have been for 6 years. I have tried most of the others with little or no benefit. My hands and feet are distorted inspite of all drugs this in itself is a social challenge. Cutting up food, picking things up etc.

If you decide to get a scooter. Small scooters have little or no suspension and are not stable on bumpy ground but good for shopping malls. I have had one but I needed help to lift it into a car. A scooter that folds is good but the parts of any of them are heavy and can be fiddly to put together on your own. You need to have room to store one and charge it up.

I hope you are feeling better today.


pat66 profile image
pat66 in reply to etomlinson

Thankyou for your reply definitely something to think about the size etc

I have a mobility scooter, that comes a part to put in the car. I tend to use mine if I am going for a day out. As others have said if you feel like walking then do so, but if you don't feel you can there is no shame in using a scooter. I would't be without mine, as I know I would'nt be able to go on day trips. I thought long and hard about getting one, as I was scared I would become reliant on it. If I am just going to a shop or the bank etc in town I try my best to walk. If say I am going to the zoo with the grandkids then I take my scooter. At the end of the day only you can decide what is right for you.

Anne x

pat66 profile image
pat66 in reply to Anne-54

Thanks for your in put I think you use it the same way I will be

Hi. I agree with everything that has been said. It is very important to keep mobile while you can but if you need a scooter for going further than is comfortable and it enables you to partake more in enjoying your family then go for it. Get in the scooter, hold your head up and stare the world in the face. Don't forget it is mind over matter - if someone minds they don't matter. Good luck and keep to the speed limit. x

pat66 profile image
pat66 in reply to Sheila_G

Hahaha thanks but I don't think Lewis Hamilton has much to worry about

Get the scooter! A friend with muscular dystrophy who is 28 has one and it gives her so much more independence. At the other end of the scale, my Grandfather enjoyed his and would meet up with his contemporaries on theirs where they would compare models, speeds etc as if they were in a biker gang 😁😁

I have had times in the past (when I was in my 30's) where a mobility scooter would have been useful but I have resisted in favour of painful walking because I feared that I would rely on it too much and it would be giving in! Since then I have changed medication and my RA is in remission. I now walk regularly 3-5 miles pain free ( as long as I'm wearing the right footwear!) . So needing a scooter could only be a temporary measure until you get your disease under control. I say if your mobility is holding you back then get the scooter and enjoy getting out and about :)

I think you already know what you are going to do, and I would say if you feel that it will be beneficial to you, then blow what anyone else thinks and do what YOU will be happier with. It is about what you feel is best for you, your health and enjoyment of life. I also think you need to get a treatment plan in place and remember to walk short distances when able to. If you do get one make sure it has a loud horn lol!!

Sue X

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