Was just diagnosed with RA

Posted by kellye1962 @kellye1962, May 31 2:18am

I’m 63 & just told I have RA, I was misdiagnosed 20 years ago. I was told it was osteoarthritis and nothing could be done. For the last 5 years my hands have been in so much more pain & my pain dr I see for my spine pain, sent me to a Rheumatologist who did a lot of blood tests and said I had RA. So all these years I could have been treated & maybe not in the shape I’m in now. It’s really upsetting when Drs don’t listen to you and think they know what is wrong with you, without doing the proper test to rule other things out. My hands feel like they’re on fire and hurt so bad my fingers have been turning for years now. My depression and anxiety has gotten so much worse. We have to start standing up for ourselves with these Drs that are misdiagnosing us.

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because I wasnt all that swollen ( though my joints hurt ) generally because I wasnt that bad the physio I saw at the time told me I dont have RA, must have xray vision or something should see me on a bad day, I know I have Osteo and psoriatic arth but the rheumy said I had ra

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Profile picture for kellye1962 @kellye1962

@pm56 Thank you so much. I’m sorry you were misdiagnosed as well. It’s not fair to us at all. I’m now on Plaquenil for a month now and I have not had any relief yet, but I’m praying it will start helping soon.

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@kellye1962 I am on plaquenil , it has helped been on it a couple of years now. started effecting my eyesight what a hassle that was, was off it a month took myself off before I could get an eye test which was normal, ( was it because I was off it a month ?? I wonder ) . the rheumy said to go back on it again but I am wary.

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I too had burning on the bottom of my feet when I was first diagnosed with sero negative rheumatoid arthritis. I didn’t know how to talk about it at the time to my rheumatologist. it lessened overtime.

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Profile picture for tisme @tisme

because I wasnt all that swollen ( though my joints hurt ) generally because I wasnt that bad the physio I saw at the time told me I dont have RA, must have xray vision or something should see me on a bad day, I know I have Osteo and psoriatic arth but the rheumy said I had ra

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@tisme yes these Drs think they know better than we do. It’s our body going through this crap & they need to listen and do the blood work so they can find out what we have and not just guess. It upsets me so much.

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Profile picture for tisme @tisme

@kellye1962 I am on plaquenil , it has helped been on it a couple of years now. started effecting my eyesight what a hassle that was, was off it a month took myself off before I could get an eye test which was normal, ( was it because I was off it a month ?? I wonder ) . the rheumy said to go back on it again but I am wary.

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@tisme oh great, so now we finally get put on the right medication and it’s going to mess with our eyesight. That scares me even more.

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Profile picture for sweetundine @sweetundine

I too had burning on the bottom of my feet when I was first diagnosed with sero negative rheumatoid arthritis. I didn’t know how to talk about it at the time to my rheumatologist. it lessened overtime.

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@sweetundine it’s very painful on top of the joint pain, it gets unbearable. I’m just so depressed. I had started making wreaths about 4 years ago to help with my depression and now my hands are in so much pain I’m not able to use scissors to cut the ribbon. I guess I’m going to have to sell all my stuff and it makes me so sad, it was the one thing that I could do in my recliner because my back is so messed up and I live in so much pain from my neck down to my tailbone. I could at least be a little more comfortable in my recliner and make beautiful wreaths. It’s just me and my dog so it was nice having my wreaths to keep my mind off the bad days. 😭

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Profile picture for kellye1962 @kellye1962

@sweetundine it’s very painful on top of the joint pain, it gets unbearable. I’m just so depressed. I had started making wreaths about 4 years ago to help with my depression and now my hands are in so much pain I’m not able to use scissors to cut the ribbon. I guess I’m going to have to sell all my stuff and it makes me so sad, it was the one thing that I could do in my recliner because my back is so messed up and I live in so much pain from my neck down to my tailbone. I could at least be a little more comfortable in my recliner and make beautiful wreaths. It’s just me and my dog so it was nice having my wreaths to keep my mind off the bad days. 😭

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@kellye1962 if it can take 10 years to get diagnosed with gallstones ( was told it was indigestion or all in my mind) they are capable of anything.

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Profile picture for kellye1962 @kellye1962

@sweetundine it’s very painful on top of the joint pain, it gets unbearable. I’m just so depressed. I had started making wreaths about 4 years ago to help with my depression and now my hands are in so much pain I’m not able to use scissors to cut the ribbon. I guess I’m going to have to sell all my stuff and it makes me so sad, it was the one thing that I could do in my recliner because my back is so messed up and I live in so much pain from my neck down to my tailbone. I could at least be a little more comfortable in my recliner and make beautiful wreaths. It’s just me and my dog so it was nice having my wreaths to keep my mind off the bad days. 😭

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@kellye1962 you are so brave! You were also so smart to find pleasure in wreath-making. Our bodies change all the time. But you did it once, and I am so confident you can find your joy again! Please keep us posted.

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Please don’t give up hope of feeling better. I was a young athlete when I became sick with RA, within a month I could only stand for about 20 minutes. But meditations helped so much. I thought my future was a wheelchair, but more than 20 years later, I am very well and active (not every day).
Strange thing, RA flareups come with depression. Good thing, when the flare up is over, the depression goes away.
I pray your doctor can find the right medication and have you feeling better than you have in a long time!
Keep moving, it helps!

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I am the same age as you are and I completely relate to everything that you’re saying I have documentation from a rheumatologist that said there was no rheumatoid arthritis four years ago. Seven months ago was recently diagnosed with hematoid arthritis and since my rheumatologist is leaving Mo. Was no back up to go to. I felt the need for a second opinion since they couldn’t tell me what the nodule on my lung was. Fast forward to today. I am on the flutamide and Humira from moderate to severe RA. I use CBD in can or my hands feet and ankles. I strongly suggest using the cream and also getting an infrared blanket. Sometimes it takes a combination of different things to help. Good luck.

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