Trying to get diagnosed. Atypical symptoms.
Posted , 7 users are following.
Hello everyone,
I've been trying to get a diagnosis, but the doctor doesn't think my symptoms qualify. I wanted to ask if anyone here who has been diagnosed experienced something similar.
About a month ago I started having joint aches that began with my fingers and spread everywhere (in a symmetrical pattern) - feet, hips, shoulders, jaws (my jaws also felt very hot, at which point i began taking anti-inflammatories and it got better). I also experience eye dryness.
However, I don't have swelling, redness or morning stiffness. Also my RF is negative. My CCPA was negative when I got tested in November before all the aches started (I got tested due to prolonged wrist tendinitis). Not sure what it is now.
Has anyone experienced joint aches without swelling/redness/morning stiffness as part of RA? My rheumatologist didn't diagnose my with RA because I lack swelling.
Thank you all <3
0 likes, 7 replies
cherylnanny jenny777
Posted
Hi Jenny. I don't want to worry you any further, but I was 3 years waiting for diagnosis. I had no markers for RA in my blood tests, but had all the same symptoms as you. Eventually the RF presented itself and I was almost elated by the time I was diagnosed, because at least I knew what it was. I was told I had tendinitis early on too. Keep getting your bloods checked. I never had swelling.......just pain. Keep up with anti inflammatory meds when it's bad and keep a daily record of every symptom. Good luck. PS I am 10 years down the line and feel great. Once diagnosed, I got great care and effective treatment. x
jenny777 cherylnanny
Posted
Hi cheryl,
thank you for your reply!
The tendinitis started after me holding my phone up for a very long time in an uncomfortable position. So on one hand there was an initiating incidence... on the other hand, would something like that have caused tendinitis in someone without RA?... I don't know.
Did you also not have any morning stiffness?
Btw I'm glad you feel great and managed to get a handle on the disorder!
Another question, just wondering, did you make any lifestyle changes between the start of the pain and the diagnosis, and did they have any effect? Did the pain come and go or did it stay consistent?
Thanks!
cherylnanny jenny777
Posted
Hi Jenny. I remember having episodes of waking in the night with pain. I would sit drinking tea, until the pain killers eased it. As a result, I was stiff in the mornings. Couldn't get in and out if the bath sometimes. The main changes I made were eating healthily, plenty of oily fish and greens....yuk. Also, really important, whenever possible, nap in the day when you're body tells you to. I also tried to relax with meditation through earphones. It sounds stupid, but when I felt really down, I would remind myself that this 'thing' was not going away, so I sort of treated it like a naughty friend . Eventually, things got so much better, and now I ride 'flare ups' because I know Keeping calm helps until it passes. My GP was great for understanding the pain, but only Xray of my hands and feet proved conclusively that it was RA. Take care and good luck x
EileenH jenny777
Posted
There are quite few disorders that could cause those symptoms - not just RA. And it is a rheumy's job to work out which. Did they suggest anything else it might be? Or did they just dismiss you out of hand?
jenny777 EileenH
Posted
The doctor also suggested the possibility of fibromyalgia, but I don't have any of the other symptoms, so it seems unlikely to me. He got annoyed at me partway through the appointment and decided I took up too much time, so he kicked me out X_X I didn't even get to discuss fibromyalgia with him. I have an appointment with someone else in a few months so I'll talk to them.
martin31040 jenny777
Posted
Hi, some of what you describe is classic Rheumatoid Arthritis, also you can have RA without the RF Rheumatoid Factor, some have it some don't, there are many forms of Arthritis etc, hope you get things sorted soon.
tim79598 jenny777
Posted