Symptoms of Spondyloarthritis
Hi everyone,
I am new to this forum as I wanted some help on trying to understand what is going on with me and how to tackle the rheumatologist.
I have been diagnosed with inflammatory arthritis by a private rheumatologist that I had to see as both my knees were hugely swollen and painful. He wants me on methotrexate but due to the cost of monitoring etc I am waiting to see nhs rheumatologist to start this.
During this time I’ve been reading. I have to say the spondyloarthritis descriptions on Reddit etc I feel apply to my decades long list of complaints vs something like RA. My hands feel occasionally stiff and puffy but I have never had swelling of the fingers/wrists etc, I feel like that pain is to do with my neck. I’ve been complaining for years of neck/shoulder/hip pain (which physio said was si joint). I’ve read in women the neck can be the first place for symptoms to show.
I have had imaging on my neck when I was 28, it was unremarkable with some wear and tear which was said to be normal, dehydrated discs or something from memory.
My ANA is positive 1:320 this time and 1:640 years ago. But other tests in the past were negative such as ena and crp etc. didn’t get any other bloods except ana done this time with both knees hugely swollen.
So my questions I guess are:
What does the pain fee like, are there any significant things that stand out that is different from just overuse/age related pain.
How do I reasonably get rheumy to test for this as I told him about my neck pain, he just sort of shrugged, it didn’t send him on a path of considering what category of IA I was. Bearing in mind this will be NHS so unlikely they will run any tests that cost a lot.
I want to make sure I get the right diagnosis as I understand treatment is different to lupus/RA etc.
I’ve been on entoricoxib for 6 months and can’t say it’s helping with pain at all, swelling in my knees maybe but still in a lot of pain. I don’t know if this is still considered active disease as the swelling is not huge anymore.
Is there any questions I should be asking the rheumatologist or anything I should request.
Does the neck/shoulder/hips etc swell as I’ve never had visible swelling in those areas.
Any real life info/suggestions would be greatly appreciated.
I am sorry you are going through both the pain and symptoms and dealing with a doctor who isn't listening well to you. Living with any chronic illness, whether RA or AS, often requires a good degree of self-advocacy or speaking up (and sometimes insisting) to your medical team. Here are some questions to ask yourself when wondering about the treatment you are receiving. For many people AS takes a long time to diagnose, so you aren't alone with the concerns you have. For your questions about pain, here's an article about AS flares which may give you some of the information you are looking for. Please keep us posted about how things go with your doctor. All the best, Kathy (Team member) Hi there,
! First, let me start by saying welcome to our community! We’re so glad you found us here. Trying to figure out the how’s and why’s of any chronic condition is a task in itself, but there’s a lot of information and support here to help you along the way. Inflammatory arthritis pain is usually different from “wear and tear” pain. It tends to feel worse after resting, like in the morning or at night, and often comes with stiffness, but can ease up a bit once you start moving. When you speak to your doctor about what you’re experiencing, try to be as direct and specific as you can. Being upfront can help them connect the dots and better understand the full picture. As far as getting a diagnosis, ask what they think it is, what else it could be, and why they’re leaning one way over another, and if the treatment would be different depending on the diagnosis. This really matters. Lastly, if your swelling is going down that’s a good sign, but if you’re still dealing with pain and symptoms, it can mean things aren’t fully under control yet, so definitely bring that up as well.
I’ve linked a few helpful articles from our site below that go into more detail and may give you a better idea of what to expect and what questions to ask moving forward.
https://axialspondyloarthritis.net/spondylosis-spondylitis-difference
https://axialspondyloarthritis.net/treatment
https://axialspondyloarthritis.net/tests
https://axialspondyloarthritis.net/living/rheumatologist-preparation
This journey can be a lot to manage at first, but I'm confident you will find the answers, relief, and treatment that will work best for you.
Wishing you all the best,
Latoya (Team Member)
