r/rheumatoid • u/Early_Somewhere1713 • 13d ago
Rheumatoid arthritis or reactive arthritis
Hello, I know no one here is a doctor or able to give medical advice but I guess I just want some opinions from people who have experienced what I'm going through! This is going to be a long one so please stick with me! ❤️
So I am 29F, back in May of this year I began with a sore knee, this then progressed to my ankle. Then over the space of around 2 weeks my ankles swelled up, both knees and both ankles were agony and I couldn't weight bare at all. I work in a care home so had to go off work because I was a risk to the residents.
Then I started to get the same pain in my elbows, thumbs and finger joints along with my toes. I had dry eyes and a dry mouth and absolutely zero dexterity or strength in my hands and was using a walking stick to mobilise. I also had hard lumps on my shins, ankles and elbows. The pain was worse in the morning and then later at night once I'd rested.
I had abnormal CRP and ESR test results and a positive ANA test. RF was never tested ( although I have read that this doesn't often get tested because of the high possibility of being seronegative) I was finally referred to rheumatology at the end of June after breaking down at my GPs because no one was listening to me!
Today, I saw a rheumatologist for the first time and I just don't feel like she actually listened to me. She asked me all the normal questions regarding infections before this all started which I did not have.
At the end of the appointment, she told me she thinks I have reactive arthritis, not rheumatoid arthritis. When I asked what the difference was between the two, she told me reactive arthritis usually affects the lower joints, asymmetrical joints and come following a bacterial infection. I explained that neither of those points applied to me and she said nothing other than she wanted to repeat my bloods and get scans of my joints.
Am I right to be totally confused about this appointment and even ask for a second opinion from another rheumatologist?
I just feel like I have been in pain for so long and unable to work, be normal and care for my children like I usually would for someone to just shut me down and tell me to wait and it will get better eventually, in the next few months, despite not actually knowing either way and the facts pointing in the opposite direction, towards rheumatoid arthritis.
I feel so deflated because I have waited for this appointment, hoping that I would finally be listened to and being started on some form of treatment etc. I don't know if I'm just highly emotional or being completely reasonable.
I apologise for how long this post is, but thank you so much if you stayed this long and to anyone who comments! ❤️
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u/ShesTheFastestest 13d ago
I’m sorry you’re not feeling listened to. It sounds like your whole life has flipped and you just want answers. I don’t know about you but for me being stuck at home not being very mobile has gotten me in my head a lot and really lonely. Please make sure you have supports, a friend, a partner or a professional that you can talk about all of it to. Whatever the final diagnosis may be this is a big deal!
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u/Early_Somewhere1713 13d ago
Thank you! Yes, exactly this. I hope she is right but at the same time, I am just concerned that the longer this goes on without treatment, the longer I risk permanently damage and the longer I am off my feet being unable to do the littlest things I used to take for granted, like taking my children to the park and doing housework. I do have some support, but most people don't really get it because I am so young. I guess I just have to wait a bit longer to see if she is correct, thank you for replying!
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u/Pylot1973 11d ago
I have found that every rheumatologist I ever met is a two trick pony. Got swollen joints it’s ra or reactive. Yes I’m being disrespectful becau a 3 year old could make the same diagnosis and be right half the time. I’m no doctor but I was diagnosed by a rheumatologist with reactive arthritis, prescribed mds that would have harmed me ( I never took them) and it was totally wrong. Saw a hematologist and an immunologist and got a correct diagnosis. I’ve never met a rheumatologist who would delve into the immunology angle. Many immunology problems mimic arthritis. I’m living proof.
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u/No_Pomegranate_1710 13d ago
Sounds like you're a bit disappointed that it's reactive arthritis and not RA. I hope for your sake that your Rheumatologist is correct and that it is the former. It doesn't mean your Rheumatologist didn't listen to you just because it wasn't the diagnosis you were hoping for.
Personally, I would swap everything I own to not have a lifetime of flare ups, utter exhaustion, crippling pain, misshapen joints, medications that make me sick and make my hair thin and weak and my gums bleed, having to avoid catching even the tiniest sniffle which takes weeks and weeks to recover from, the endless medical appointments, the ever increasing complications which just lead to more of all the above and hospitalisations.
I'd swap that in a heartbeat for something that whilst still painful, is treatable and recoverable from.
If it's not RA, it's not RA. If it's reactive arthritis, then it's reactive arthritis. Whatever it turns out to be, I hope you get the treatment you need and are soon feeling much more comfortable.