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Was just diagnosed with RA
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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I’m so sorry. It’s so wrong what happened to you. I have also been misdiagnosed over the years and it makes me resentful and angry. But on the other hand, it also makes me appreciate the handful of doctors who have gone out of their way to really listen and try to treat me as a whole person and not just a number. Hoping with the correct treatment now you’ll start to feel better quickly.
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1 ReactionDoctors are dedicated but not infallible. Multiple opinions are important for comparison purposes. When you find one that respects your opinions and questions, is compassionate and is highly skilled, hold on to them.
My wife has had RA for many years now. She gets some relief in her hands, which have been subject to RA, osteoarthritis and Dupuytren. She does get some pain relief with 300 mg thc/cbt hand cream. Everybody has a different level of sensitivity and she has gone through far more than most but they make lower mg as well which may work for you. We are in Florida but in New York city, they make a 1000 mg cream.
Also, make sure you end up on the right biologic. RA can attack organs and joints in the body including the heart and liver so the choice of biologics, which can increase inflammation, is important.
Finally, take a look at Setpoint Medical. It is a device that is inserted in the vegas nerve, the longest in our body, and in conjunction with some or no biologics, reduces the inflammation by sending a daily low level electrical signal through the nerve. A rheumatologist at Mayo told us that it is for people who have steadily been on a biologics program and my wife got off her biologics as she has had a bunch of co-morbidity "stuff" that has taken time to deal with. It's worth going to their web site and asking your doctor questions. Don't be surprised if your Rheumatologist is unaware of the device.
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2 Reactions@kelly1962
I remember how upset I was when I was told I had RA. I had been ill 25 years before I had this diagnosis. I was told it was all in my head, also that I needed to learn to meditate. In fact, I had a 20 years mediation practice when I was told that!
I want to suggest that your healing begins now. You may find a rheumatologist who can start you on a biologic. For me, it's not like I kept getting worse once I had treatment for RA. I have seen reversals in both pain and swelling. One source of anxiety for me was that I didn't know healing was possible. I thought I had missed out and like so many others wonder, what are the chances for healing?
You may come to learn about exercise and diet, vitamins, other treatments (meditation!?). And the balance is a new way of living with a long time of disabling illness.
I was 31 when I became ill. In my early 50's when I was diagnosed and started with a biologic: Remicade 3 years, and Simponi for 10 yrs. Now I'm 68 and other autoimmune illness, plus having had head/neck cancer survivor with permanent changes from radiation, that's what I'm challenged with most. RA is not the horrible experience that I feared.
didnt know the burning feeling was part of it, cos I get that in my hands and feet, doc tried to tell me its osteo. the previous rheumy said sero negative ( about 5 years ago ).