Hello everyone! I am new here and I just had a question. I was diagnosed with sero-negative rheumatoid arthritis a little over a year ago. I have done well considering I have not been able to handle most of the meds for RA. I have however had a tremendous amount of pain especially in my knees and hips, along with nauseating back pain lately. I have always been pretty energetic and I love to go,go,go, but lately when I am walking around it is getting to the point everytime I take a step I flinch because it hurts so much. I am stubborn about not slowing down...but I believe I am doing more damage now than not. I have considered a cane, but both knees and hips are affected. I have also considered a walker, even though I really don't want to go there, but the problem is that my arthritis is also painful in my wrists, fingers,shoulders and elbows... so any pressure on my arms will cause problems also. So my question is a wheelchair? To what point do I need to move to that decision? Please help me!
Q: I am wondering if I should consider a wheel chair, instead of a cane or a walker?
Hi, Jessielee,
Happy to have you here, but sorry that you have RA. I read your question with great interest. I, too, am seronegative, and was diagnosed about a year ago. Of course, I had RA for years w/o a diagnosis. Is that also your situation? I ask because it sounds as though you have a lot of joint damage already. I, too, am considering a scooter or a wheelchair. Have you tried using a cane? I know you said both hips are painful. If one is worse than the other, then using a cane for the weaker side may help. I get along okay most days, but it is difficult to walk sometimes, especially when it feels as though you are walking on rocks! Ugh So, I think I understand where you are coming from. There is a HC member who just bought an electric wheelchair to use outside of her home. She has RA in her feet and it is quite painful for her to walk. There are also portable scooters you can buy that break down into parts for transport. I was considering one of those because I like to go to the zoo and museums, and if I ever feel well enough to go there again, I will need something to get me around. You definitely don't want to get a "manual" wheel chair....too hard on the shoulders, elbows, etc. After talking to Wonderwoman ( HC member ), I think I will probably get an electric wheelchair for getting around big public areas when the time comes. Still not sure though. Those scooters are pretty cool looking, and they have bright colors! 
I guess I'm not really much help. Something like this takes a lot of though. Let us know what you decide and how you like whatever device you end up getting. The whole idea is to get out there and live life, so whatever helps us do that is A-OK in my book!
Blessings,
V
I've been asking myself the same sorts of questions lately. I'm also sero-neg, and like V, suffered from the disease for a long time before getting a diagnosis.
I've gotten to the point that I no longer leave the house except for medical appointments -- its been this way for a while as I've been on disability for over a year and was limited in mobility for a while before that.
I'm unsure if I want to pursue this at all, however, because of that age old addage: "use it or lose it." Also, I think insurance would probably pay for these devices (I know that good ones are quite expensive) but don't know for sure. I'm lucky in that the house we bought before I was diagnoses (and in the golden period in which I enjoyed a spontaneous remission for several years), is completely accessible on the first floor -- it even has concrete ramps.
It feels, in many ways, that I'm "giving up" even by thinking about it... and I've already given up so much of my past activities.
To BerserkeRA, Hello there...I just wanted to say thank you for your response. I think you are just very frustrated that you aren't able to do the things that you wish you could do just like me.(without assistance) Never feel like you are just "giving Up" if anything you are going to help yourself be able to do more things with help of course from these devices...that's what they are for
I feel just like you do...I get that use it or lose it is true to a point, but when the pain is so severe and you can't even take a step without wanting to scream, well that just blows right out the window for me. Everyone is different, and if it helps us to get out in the world instead of sitting at home...I'm going to do what I need to do even if it means using a cane ect...again thank you, and I hope you make that decision! I will be here if you need to talk!
Hi, BerzekaRA,
I know it's so hard, but try not to become discouraged. If you had a way to get around better, wouldn't you enjoy getting back into some social activities? Getting out is good...and necessary...for the soul. Think about it some more, and let us know what you decide.
Blessings,
V
first, I want welcome you to the MyRACentral community! We are very happy to have you here, although the reason you found us sucks.
I like your approach to this conundrum. I've used a power wheelchair myself since I was 16 and usually want to roll my eyes when people talk about a wheelchair as being a horrible fate. It really isn't and you very clearly already know this. It can be is a terrific way to help conserve your energy. Right now, you are using a lot of energy on walking, which means you have very little energy left over to live your life. A wheelchair may help you conserve that energy and help manage pain and thereby enable you to have parts of your life back. Check out our Contributor Brad's post on his experience getting a wheelchair.
Of course, there is also the concern that if you use a mobility aid too much, you can lose function and you have to find a balance between the two. V's thinking of using the wheelchair for longer distances and still walk (perhaps with a cane) inside might work in that respect. In terms of the strain this might cause in the joints in your upper body... you can get crutches where instead of bearing weight on your hands or under your shoulders, you rest your underarm on a sort of brace and it can make it a bit easier to use. It might work for inside without making a flare too much.
I would recommend that you speak to your rheumatologist about this and ask for a referral to a physical therapist who can help you with the proper tools that will work for you. They would also be able to help you with finding a way that you can continue to build strength without causing flares. You may want to read my interview with a physical therapist about the different ways they can help people with RA expand their daily function.
You may also want to ask for a referral to an occupational therapist who can help you with modifications and doodads in your home that can make your daily activities easier.
good luck! Please keep us posted on
Thank you Lene for your response!! I really prepared myself mentally if this was to ever happen to me...RA is a serious illness and I knew going into this that there was a chance that someday I may have to use these devices...and here I am. I really like the idea of V's also going from wheelchair to cane...that is something I will probably look into because I still think short distances I can handle a cane...it just depends on the day. I don't know, I will see. I have a rheumy appointment next week and I will ask him what he recommends, but coming from you guys I think your ideas are great!! Thank you very much!
You're very welcome! Please let us know what happens next week?
I sure will, thank you again!
Hi Jessielee
I recently bought an electric wheelchair because of the same issues. I have used a stick, crutches and a walker.
The walker is ok in the house, very handy for carrying cups of tea and other things, but since I got the wheel chair I am really happy with it.
It has been hard to get used to loading and unloading, I am using a ramp, but probably need to look at something even easier, like and electric loading device.
I got a chair rather than a scooter because it is more manouverable, and I could use it in the house if I needed to.
I really enjoy feeling free to hang around the shops again and not be unable to concentrate or stay long because of pain
It is one of those happy/sad situations.
All the best
Hi again
I forgot we had talked already he he, blame the fibro fog, or the pain meds or both, really my brain does actually function some days.
Hey me and you both! I have fibro too and I will tell ya it was so bad one time when I was still working as a barber, I was doing a haircut and I stopped because I forgot what I was doing...it scared me so bad I cried!!!
Hello wonderwoman, thank you for your information! I am really glad that you are happy with your wheelchair! I love to get out and about too, but when we drive by the mall anymore I cringe at the thought...I had taken my daughter there not too long ago and I pay for it almost everytime. We live in a duplex so using a cane would be sufficient there because of the size...I am definitly going with wheelchair too for those days when I am out shopping! Thank you so much for responding!
(I have tried to drag hearts for my appreciation for you guys, but for some reason it will not work for me on this computer)
HI
I can't drag hearts to replies either for some reason.
Hi Jessie,
I have been in almost the exact same situation and have had to make the same hard choices, so I thought I'd give you a reply since it took me a long time to take this step myself.
I also have seronegative RA, along with fibro and an autoimmune liver disease. I was diagnosed with the RA about 6 years ago and I've been fighting it ever since. Over the past year I've had a lot more progression and have had to use a cane constantly and a walker sometimes at home but never in public because I was too embarrassed (and probably did more damage because of my stubborness). However, within the past 6 months I've had so much pain in my shoulders as well as my hips, knees and feet that walking more than 20-30 feet has become almost impossible and incredibly painful and taxing. Slowly, I watched as all the things I used to love to do left my life and I felt like I was losing pieces of myself with every activity that I could not longer do or enjoy. We bought a manual wheelchair but I couldn't push myself more than a few feet because of my shoulder and hands - I had to rely on my husband to push me and he's not in the best of health either.
I've had to cut my work hours back to half but I am one of the lucky ones who have an employee based disability insurance that helps me retain enough income to live on. But work was taking everything out of me. My friends and my doctor suggested I get a mobility chair and I, of course, resisted. But my husband put it to me this way one night, would you rather sit at home and never be able to go out and do anything with me or your friends/family, or would you rather suck it up, get a motorized wheechair and be able to go to the mall, the park, to the movies, to festivals, concerts, etc....?? He emphasized that the chair was there to help on days and in places I couldn't walk, but I wasn't confined to it, so my ability to not use it was also still there. I couldn't argue with that, so I started the process with my doctor to get the chair through my insurance.
Now at work I can get up and make my own copies, not worry about the pain of the long walk to the bathroom, get coffee and visit co-workers without pain or the extraordinary effort to walk to those people and places. I can browse through the giant bookstore on my own when my husband and I go or stroll through a mall or local fair... things that I've been unable to do for at least 3-4 years. I have sucked up a bit of my pride and admitted to the world that I do need help because RA has taken something from me... but my new chair has given me back a piece of myself that I lost a good while back and that feeling is immeasurable.
Go with the chair, get your life back... YOU deserve it. :)
Good luck and God bless...
Hi Jessielee,
As Lene mentioned above, I have a power chair as well. I am seronegative as well and went from a cane to crutches to a manual wheelchair and finally to a power chair. I was diagnosed around four years ago that went without a diagnosis for many years. I wish I had gone with power chair earlier, it's amazing the amount of freedom it gives you back. I have a carrier on the back of my pickup and I take it everywhere with me. Talk to your doctor about it is they need to prescribe it for you. I do know several people with RA that swear by them as I do as well. My first power chair was a golden brand, my current one is a hoveround,they both seem about the same to me, but the Golden was more comfortable as I had added a sheepskin seat cover. Good luck!
Brad
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Hello V!! Thank you very much for your response. I appreciate your input very much! People that don't understand what we are feeling are hard to talk to about this stuff, right! I have problems in every joint including my jaws..I am a very outgoing person and I love to get out and about as much as possible. I am limited a lot more than I used to be and I start hurting very quickly anymore so I am trying to save myself the misery of having to fight through the pain and enjoy being out whenever I can. I believe that I have had RA for a while too. I went through a ton of doctors even to Mayo Clinic and they diagnosed me fibro..but three months later I became very ill and was sent to a rheumatologist here where I live again. Since my bloodwork never showed anything, this doc was smart enough to do x-rays on my joints and found that I had inflammation and erosions already, thats what lead to the diagnoses finally. I think I am going to maybe try a cane first and see how that goes. I know of someone that has used 2 canes because they did not want to use a walker. My only problems is that my shoulder, hands, fingers and back are also painful so if I put pressure on them they hurt too! I hate that you have RA too, but I am grateful that you know exactly what I am taling about! I appreciate your input so much...makes me feel so much better you just don't know!!
Thank you again!