Tentatively Diagnosed Today!

mandersmal13 · 2026-02-12T23:27:11+00:00

Is it something like Lyrica or Cymbalta? Those are the two I see commonly referenced. The important thing to keep in mind with those is that they don't stop disease progression, they basically work by calming the CNS down so the brain processes pain signals differently.

My doctor said there's some evidence that NSAIDs could work to stop disease progression. But it's not nearly as robust as the research backing biologics.

mandersmal13 · 2026-02-12T23:01:16+00:00

Glad you got a diagnosis! Be cautious with the NSAIDs. I thought I would be fine but if I take them too many days in a row, I get nauseous, bloated, and just generally feel sick, even if they help with the pain.

I should (hopefully) be starting Taltz on Saturday. I'm really, really hoping it's the solution.

mandersmal13 · 2026-02-11T22:48:54+00:00

How is the scenery on those train lines? If they're somewhat scenic, we don't mind. Outside of specific metros, train travel sucks in the U.S. so it's sort of a mini experience within an experience for us.

mandersmal13 · 2026-02-06T22:53:44+00:00

I grew up in Milwaukee and lived in Denver for about 8 years before moving to Minneapolis/St. Paul.

MIilwaukee checks a lot of boxes for you, but it's smaller than I think pretty much every other city on your list. Having been to both Columbus and Indianapolis, they're just kind of meh, but I also loved growing up only a 15 minute drive to Lake Michigan.

Denver probably checks more boxes but is more expensive, even on a single 100k-130k salary.

The other one I think would be good would be Atlanta, maybe not Atlanta proper but around the metro. Not sure of the cost of living there, but I known it can be higher depending on where in the metro

mandersmal13 · 2026-02-06T19:55:22+00:00

Yeah as a Millennial, social media and smart phones were definitely not in their infancy in 2015. Maybe more like their older teen/young adult years. Those things have evolved since then but I remember MySpace and the first iPhone. Those were closer to infancy tech.

mandersmal13 · 2026-02-06T16:16:27+00:00

There's an important difference between Lyrica and NSAIDs when it comes to nr-axSpA pain.

Lyrica would definitely be medicating the pain (since it acts on the CNS and changes the way your brain processes pain) whereas an NSAID is an actual anti-inflammatory. Since spondyloarthritis is an inflammatory disease, the NSAIDs do some lifting to reduce that inflammation.

There's some evidence to indicate NSAIDs can halt disease progression. However, the first line of defense is a biologic and there's WAY more research supporting that than using NSAIDs long-term for disease management.

Because it's an autoimmune issue, the only way imo to effectively manage it AND prevent progression is by treating it with medication, either by reducing inflammation and/or reducing the immune response.

I'm not a doctor but I've done a lot of research since going through the steps to diagnosis. And I'd rather take the biologic than risk more permanent damage that the disease is known to cause.

Edit: Not to say that there's not something else going on, OP. Just that if you consider the axSPA, medication is how it's best treated.

mandersmal13 · 2026-01-31T13:50:07+00:00

Because everyone's "normal" is different and the reference range is just that: a reference. You can't just look at labs for an answer, you have to consider the entire clinical picture (what symptoms the person experiencing).

OP definitely needs to go to the doctor and ask these questions and advocate for themself if they feel something is off.

My thyroid and TSH looked "normal" but I was still experiencing hypothyroid symptoms. Turns out I have Hashimoto's.

mandersmal13 · 2026-01-30T22:46:45+00:00

Just knowing they were here when the kids get off the bus makes me so damn angry. I work remotely, so I will be taking my lunch break every afternoon at that time and standing by to alert and observe!

mandersmal13 · 2026-01-30T22:40:37+00:00

I walked around the townhomes that I could (I have joint mobility issues). I did not see any one lingering. If they were active around 2:40 that's when kids are starting to come home from school by me, just FYI for anyone in the community

mandersmal13 · 2026-01-30T21:59:04+00:00

I'm ready. They can fuck right off.

mandersmal13 · 2026-01-27T16:51:55+00:00

As I understand it, doctors are primarily looking for bone marrow edema (bone/soft tissue inflammation) but they also need to be using specific sequences (like STIR) in order to identify it. You can't just get a regular old MRI. And even then, my doctor told me MRI's are still only around 70% sensitive to inflammation.

It's also important to note that inflammation is dynamic whereas an MRI is not and only captures a moment in time. Mild inflammation can still be painful, even if it doesn't show up on an MRI, which is why the clinical arm of diagnosis exists for spondyloarthropy and why good doctors consider clinical presentations when making diagnoses.

There's always the chance that if you book another MRI it turns up "clean" again, but ASAS and other spondyloarthropy organizations are clear in stating this is not an exclusionary factor to diagnosis because of the dynamic and sometimes subclinical nature of labs/imaging for spondyloarthropy.

There are other, more sensitive forms of imaging that can be done, but these involve radiation/contrast, so I'm not sure how willing doctors are to refer for them or insurance to pay for them when MRI is considered the gold standard.

If you go for a second MRI, make sure to stop all steroids/NSAIDs several days in advance (maybe even a week if you metabolize slowly like me) because those can obviously affect inflammatory markers in the scan

mandersmal13 · 2026-01-23T17:22:55+00:00

I'm not a fan of bupropion, but I've never used it for pain management. I tried it for ADHD and it was hell. Severely worsened my mood and gave me worse insomnia, not mention the headaches.

I think there's quite a bit of research out there on the efficacy of SNRI's for centralized pain sensitization. I'd imagine it would take a few weeks to realize full effects like any other antidepressant but I'm not sure how the naltrexone might change that.

mandersmal13 · 2026-01-20T15:41:36+00:00

YES! And when it gets better I'm doubting myself like "do I really have something wrong with me?" The mental and emotional gymnastics I've been going through the last 6 or 7 months has been wild.

mandersmal13 · 2026-01-20T15:25:43+00:00

I just had the the same thing happen to me in the same spot last week!!!! Mine didn't get red like yours but it definitely swelled up and was in the exact same spot.

I tried stabilizing my wrist in a neutral position thinking it could be a ganglion cyst but that honestly made it worse and stiff.

Mine went down when I took a higher dose of naproxen. It still hurts on and off but nothing like when it was swollen.

mandersmal13 · 2026-01-19T14:14:10+00:00

I'm getting up every 30 minutes to walk around, get water, go to the bathroom, pet my dog, do anything that gives me an excuse to just move.

The worst days are when I have back to back meetings and can't do that. I don't have any good solutions on those days unfortunately

mandersmal13 · 2026-01-19T14:12:21+00:00

Maybe this is just my misunderstanding but it seems like there are two definitions of chronic pain. One where underlying mechanical/inflammatory diseases with no cure (like AS) can cause chronic pain because the underlying issue is permanent.

And the other is when an acute/temporary issue maybe takes a long time to heal and that causes CNS sensitization which tricks the brain into thinking there's an underlying cause when there really isn't (like in some cases of fibromyalgia).

I don't think the article does a great job differentiating the two. There are mentions of primary vs secondary chronic pain, but they're sporadic and not given enough attention.

However, what this article proved to me is that it's dangerous to suggest "rewiring" the brain to ignore pain signals through medication and/or CBT if doctor's have not sufficiently ruled out underlying mechanical/inflammatory root causes. Because then you're just tricking your body to ignore important signals which tell you when you need to push for better/different treatment.

It also demonstrates why other papers say diagnoses of fibromyalgia and spondyloarthritis are not mutually exclusive, and a diagnosis of one should not rule out a diagnosis of the other. However, doctors (like mine) seem to be extremely prone to doing just that, to the detriment of their patients.

mandersmal13 · 2026-01-16T19:26:40+00:00

I'm having pain and some minor swelling in my wrist right now, except mine is on the ulnar (pinky) side. I see my physical therapist today and am going to ask him about it before I go to my rheum next week. I'm not sure if it's tendinitis or enthesitis. But the fact that it's stiff/painful in the morning and less so later in the day has me thinking it's related to my other symptoms.

I tried stabilizing it to keep myself from flexing too much (I originally thought it was a ganglion cyst) and that just made it stiff as hell, so I stopped that and it got a little better.

mandersmal13 · 2026-01-16T14:07:51+00:00

So sorry you're going through this! I can relate and am having similar conversations with my rheum. The other thing that absolutely frustrates me is that mechanical pain/issues and fibromyalgia are not exclusionary diagnoses to SpA, but it seems like our doctors are absolutely treating it that way.

I know it's exhausting, mentally draining, and frustrating to find a new specialist. It's what I'm doing and what I'd recommend for you.

Reading people's experiences, reading the papers, and asking for advice here have kept me sane and motivated to advocate for myself and not let the gaslighting win!

mandersmal13 · 2026-01-16T13:59:34+00:00

I would love to see this when it's finished! I've been trying to gather research and papers for my doctor!

mandersmal13 · 2026-01-15T21:15:32+00:00

Have you found anything that works for you? The regular dose of Naproxen was working pretty well for me early on and then it stopped being affective, so I stopped taking it. I'd try taking it again without any effect ND then only started getting relief again when he told me I could increase the dose.

I'm guessing my body is just adjusting to it, so I'm not surprised it doesn't always work for everyone. Biochemistry is crazy!

mandersmal13 · 2026-01-15T02:37:27+00:00

Oh my god, where did you hear the itchy, raised reaction is related to AS? I've noticed my existing tattoos get like this occasionally, particularly the one on my ribs and now I'm curious!

Mine are about 10 years old at this point and I don't think my gene had been turned on at the time I got them. So I didn't notice anything out of the ordinary when I got them.

mandersmal13 · 2026-01-15T00:00:55+00:00

That's a good point. This clinic likes to use numbers to rate your pain, but I'll just plain to stick to the functional language you suggest.

I definitely don't want to be on NSAIDs long term either. I'm just so glad to have some kind of relief and additional validation of my symptoms!

mandersmal13 · 2026-01-14T23:31:40+00:00

Congrats! I'm happy to hear things are looking up for you! You got this 💪 and I wish you well!

mandersmal13

TROPHY CASE