Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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stephisme 07/01/2016

I have an awkward (or maybe not) question. I have RA with severe damage in my knees and feet in particular. I have no cartilage left in either knee, and have fractured my feet countless times. A few days ago I started to flare up to the point I could barley walk, then I ended up hurting my hip... don't ask how.

This morning I went to physical therapy and the therapists were very concerned because of how swollen/red my knees were. I could not do most of the exercise, so they worked on them, did heat, stem, and ice. They suggested going to my doctor right away to get checked out.

I wrote a few weeks ago about the horrible experience I had with my doctor, but I had no other choice but to go to that office again and see the doctors partner. He didn't even look at my knees, or any of my joints and prescribed me prednisone for a week.

At the end of the appointment I reluctantly asked if he would be willing to write me an order for a portable travel chair for when I had to walk long distances for work or flares. He said I was too young for that and he would never call that in. I then asked for forearm crutches to help me out, and he reluctantly called them in saying he didn't even know how. He said I should feel fully better tomorrow with the prednisone.

It was tough to even ask. My therapist had been trying to get me to ask for a few weeks, and I finally agreed a few days ago.

Has anyone ever used a wheelchair for long distances?

californialynn 07/01/2016

You need another rheumatologist.

MarleneJ 07/01/2016

Definitely a new rheumatologist. And yes, I have a wheelchair. It is not electric, and my hands, wrists, elbows and shoulders are damaged, so other than rolling around the house, I need someone to push it. I got it through a provincial program which only charged a small amount of money, and it is mine till I die. If you cannot walk because of damage, you should have a wheelchair. Or a walker? I also have a cane, and crutches for in between. Wheelchairs are handy to have when you have reconstructive surgery. I hope you find a better rheumatologist. Who on earth says "you are too young" who knows anything about RA? Just pathetic! I'm sorry you had to go through that.

WarriorGal 07/01/2016

If you have no cartilage in your knees - that means you have "bone on none"?? Have you seen an orthopedic surgeon? It sound like you are a candidate for one replacement. Also, your doctor doesn't sound very compassionate, but you seem to already know that.

In answer to your question - YES, I used a wheelchair to take my kids to six flags before I ha amy knee replaced, and I have used wheelchairs at airports.

How much prednisone did he give you??

I am sorry to be a broken records, but I think we ALL need to be more assertive with our doctor. Instead of just waiting for him to look at your knees - pull up your pants and say: LOOK!!

jteach 07/01/2016

Agreed, please get a new rheumy! You deserve better.
Juls

stephisme 07/01/2016

Thanks everyone for the replies. I do have an appointment with a new rheumy, it's just not until July 11th so I had no choice but to go back to the other office today :(

I am just nervous now to take to the new one about it when I see her. It was so tough to bring it up in the first place... and then it was shot down.

The rheumatologist really seemed baffled when I asked for one... and even more baffled when I asked for the crutches. He even asked me how to spell forearm crutches... so I thought maybe I am just off here lol. I guess from reading the replies I am not.

My mom called the doctor after I left and told him she was angry with what he said. He called me and apologized, but would not change his mind. Said he would call in a transport chair at most.

I don't know if I am a candidate for knee replacement because of my weight. Surgeries also seem to be a bit more complicated since I have the immunodeficiency.

Thanks again for the advice and support everyone!

depotblue 07/09/2016

call your local disability office and see if you can get a list of places that have free wheelchairs being disposed of, better than nothing. should your health insurance cover a manual wheelchair as a piece of durable medical equipment and your provider be pig headed enough not to validate your own assessment of your functionality and adaptiveness then ask him if you can have a pt eval to evaluate your function and endurance. you should not have to pull in an allied health provider to talk a provider into writing a script that will be covered on your own insurance. what a winner this provider is (sorry) :). - check free stuff locally on your own craigslist while you are it. if all else fails and you can't pay cash for one, look at gofundme and put up your story. maybe your friends and family can all chip in. don't justify your lack of endurance or ability to keep up. don't apologize. act.

sorry about this

depot

coaltrain 07/10/2016

Depot has the right idea. My in-laws live in a retirement community which also has an assisted living center. At the village where they live is a thrift shop of sorts where my mother-in-law volunteers. So far she has managed to get me a couple canes, walkers, and shower seats. Next on the list is a collapsible wheel chair.

This has been a great source for handicap accessories that I need.

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