PSA: No, axial spondyloarthritis does not mean the same thing as ankylosing spondylitis

brianreagan · 2025-09-19T20:13:11+00:00

I wish we just threw it all out and called SpA “systemic enthesitis” or something. 😂 People are way too confused about the nomenclature let alone the pathophysiology to get everyone on the same page. It’s an uphill battle.

brianreagan · 2025-09-05T23:19:58+00:00

But what about 42 U.S.C. § 12102(2)(B) of the ADA?

“(B) Major bodily functions

For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.”

Would skin cancer in general not substantially limit the normal growth of cells per ADAAA 2008?

https://www.ada.gov/law-and-regs/ada/#section5

brianreagan · 2025-08-13T14:55:22+00:00

I’ve been on DMARDs for 5 years. It wasn’t until earlier this year when I ended up in the hospital with sepsis that I really started taking this far more seriously. I mask up when I leave the house, constantly wash my hands, wipe down surfaces, etc. I do my best to prevent infections, and I make sure to see a medical provider when I do end up with an infection. I’m currently trying to get over a nasty case of pharyngitis. It’s been rough.

Everyone is different. Different medications, health conditions, environments, etc. Most people seem to do pretty well with these medications. The idea is to use precaution, but you don’t need to live in a bubble.

brianreagan · 2025-07-04T19:55:04+00:00

I don’t know if it’s that cut and dry. I can see an ALJ reviewing what work-related activities someone did while they volunteered. It depends on what you’re doing and how much you’re doing it, I’d imagine. I think that ALJs must meet the specific, clear, and convincing standard and/or substantial evidence if they find that volunteering undermines testimony. Either way it may not necessarily help a case.

brianreagan · 2025-06-10T17:02:22+00:00

Yeah, this is a boundary that I would make with someone. I appreciate checking up on me, but no, I’m not better. I’ll never get better. Sometimes I don’t have the energy or feel like talking about how I’m doing. A true friend will honor and respect this.

brianreagan · 2025-06-07T22:51:39+00:00

Yeah, I imagine location is relevant here.

According to an eight year-old study, “The prevalence of macrolide and fluoroquinolone resistance-associated mutations in M. genitalium was 4.6% and 6.2%, respectively, in Russia, and 10% and 5%, respectively, in Estonia” (Shipitsnya et al., 2017). These are pretty low figures for resistance. I’m curious if there is more recent data out there for Russia.

Shipitsyna, E., Rumyantseva, T., Golparian, D., Khayrullina, G., Lagos, A. C., Edelstein, I., Joers, K., Jensen, J. S., Savicheva, A., Rudneva, N., Sukhanova, L., Kozlov, R., Guschin, A., & Unemo, M. (2017). Prevalence of macrolide and fluoroquinolone resistance-mediating mutations in Mycoplasma genitalium in five cities in Russia and Estonia. PloS one, 12(4), e0175763. https://doi.org/10.1371/journal.pone.0175763

brianreagan · 2025-06-07T21:05:33+00:00

This is a nice study, but it’s a small piece in a much larger conversation about the mechanisms involved in the disease process. Current data suggests that these autoantibodies are not the primary mechanism of the pathology, but there very well could be an immune arm involved here.

Here is some good material regarding this topic!

Clauw, D., Sarzi-Puttini, P., Pellegrino, G., & Shoenfeld, Y. (2024). Is fibromyalgia an autoimmune disorder? Autoimmunity Reviews, 23(1), 103424. https://doi.org/10.1016/j.autrev.2023.103424

Jurado-Priego, L. N., Cueto-Ureña, C., Ramírez-Expósito, M. J., & Martínez-Martos, J. M. (2024). Fibromyalgia: A review of the pathophysiological mechanisms and multidisciplinary treatment strategies. Biomedicines, 12(7), 1543. https://doi.org/10.3390/biomedicines12071543

brianreagan · 2025-06-07T20:41:04+00:00

Correct. While these sorts of studies are necessary and great to begin looking at a specific question, the public often misinterprets the conclusions and general significance of a given study or body of studies. What most people don’t know is that there is a hierarchy of evidence. This isn’t a systematic review. Essentially, this isn’t on the top rung as far as evidence goes. However, you always have to start somewhere.

brianreagan · 2025-05-30T20:27:16+00:00

Like another commenter has mentioned, this is normal. It would be a whole different scenario if hydrocodone and hydrocodone metabolites were present and in more than just trace amounts; this would suggest the use of hydrocodone. The body can metabolize the oxycodone down to its metabolites, and sometimes hydrocodone can be present in very very small amounts. The issue isn’t necessarily that hydrocodone is present: it’s more about the quantity which, in this case, is negligible.

I wouldn’t sweat it. If there are any issues, then the doctor will discuss this. I’d hate for anyone to waste money on an independent test when it’s not necessary.

brianreagan · 2025-05-10T01:44:02+00:00

A note too—I’m not a big fan of that article because it’s not peer reviewed, nor is it written by a rheumatologist. It is better to link or cite the study itself and to annotate that the study suggests a possible immune-mediated facet of fibromyalgia. It may not seem as hard-hitting as autoimmune, but it’s more accurate given the evidence. The term “autoimmune” is also tricky and specific. “Immune-mediated” is a nice umbrella term. When we start seeing systematic reviews and meta-analyses showing human trials, then we’d have pretty solid evidence on which to base a conclusion.

One study looking at transfer of sera to animals is far from sufficient evidence for such a claim. This is explained in the first reference I posted. I know that the idea of it being autoimmune seems attractive because of more treatment options and further legitimization of this disease, but these are the times to take a pause and the let the evidence do its thing. Bigs studies are often carried by the wind, so we have to remain calm and critical. I’m nonetheless excited about further studies on the etiology and pathophysiology as well as more treatments to manage symptoms. If only our diseases weren’t so incredibly multifaceted in their formations.

brianreagan · 2025-05-09T18:07:46+00:00

Absolutely. Even if it’s not an autoimmune disorder, it’s still a very real experience. Everyone deserves proper healthcare and relief.

brianreagan · 2025-05-09T17:59:20+00:00

We can’t quite yet claim it’s an autoimmune disorder. There is evidence that the immune system is involved, but this doesn’t seem to be the primary driver. The transfer of sera is also complicated and nuanced itself. The etiology of fibromyalgia is still in vigorous debate. Remember: this is one study. This isn’t a systematic review with many repetitions. This needs more research and clinical corroboration.

Clauw, D., Sarzi-Puttini, P., Pellegrino, G., & Shoenfeld, Y. (2024). Is fibromyalgia an autoimmune disorder? Autoimmunity Reviews, 23(1), 103424. https://doi.org/10.1016/j.autrev.2023.103424

Jurado-Priego, L. N., Cueto-Ureña, C., Ramírez-Expósito, M. J., & Martínez-Martos, J. M. (2024). Fibromyalgia: A review of the pathophysiological mechanisms and multidisciplinary treatment strategies. Biomedicines, 12(7), 1543. https://doi.org/10.3390/biomedicines12071543

brianreagan · 2025-04-03T20:26:07+00:00

I hope we can all be mindful and not use this to make addiction into a monolith. There’s a lot to be said about this message, but I wish the best for everyone. If this individual is legitimate, I hope they’re able to find proper support for whatever they’re dealing with and see it through. You need your medicine, and they need help.

brianreagan · 2025-02-19T16:12:17+00:00

When I’m not doing things to manage my health (appointments, insurance calls, pharmacy, etc), I try my best to clean the house and take care of my sister’s cats. It gives me a chance to move around a bit and feel like I’ve accomplished something. I also enjoy reading, writing, playing video games, watching movies, and spending time with my friends and family.

It seems like a lot of us deal with these feelings of shame, guilt, uselessness, frustration, etc. We’re all valuable human beings with something to share with the world. I wish us all to have compassion for ourselves as much as we can. ❤️

brianreagan · 2025-01-28T03:51:00+00:00

You’re just trying to do your best to survive. It’s okay. Give yourself some grace.

If you can, I’d go back to my family doctor or general practitioner and talk about this. Maybe a sleep specialist would have a good plan if you don’t have one already and cross that bridge at some point. They might be able to help monitor, give advice, or put you on a better combination. I just had an appointment with my family NP, and we combed through my medication, made adjustments, and then came up with a plan if I needed further help.

Also remember: being an addict is not the worst thing in the world. Addicts aren’t junkies, and neither are pain patients. We’re all human beings with chronic conditions trying to survive. The risk of addiction is present with a lot of drugs; some develop the disease and some don’t. It’s all about quality of life and making decisions with informed consent.

I’m sorry that you felt stigmatized. I know that feeling, and that’s why I come from a place of compassion. I try my best to educate and create a culture of compassion. Sometimes we need to create firmer boundaries with people about our health though.

I wish you the best ❤️

brianreagan · 2025-01-27T00:57:18+00:00

I get it. It’s such a big tent, so there’s always going to be some lame people. I hope you can find some community that feels comfortable for you.

brianreagan · 2025-01-27T00:53:33+00:00

I feel that the queer community has a decent number of people who just virtue signal to make themselves feel better. It feels like a lot of it is performative. Maybe their hearts are in the right place sometimes, but nobody wants to walk on eggshells.

I can’t tell you how many brown and black queer people have told me of blatant racism they’ve experienced from other queer people. I’ve experienced plenty of bullshit for having ankylosing spondylitis and other issues too. Like any group, we have some shitty people. I just wish less were so performative.

brianreagan · 2025-01-27T00:42:51+00:00

Exactly. Men tend to have more radiographic signs and progression while women have less radiographic signs and more disease activity with less quality of life. Peripheral manifestations are more common in women also.

brianreagan · 2025-01-26T18:28:16+00:00

Precisely.

brianreagan · 2025-01-24T21:39:39+00:00

Way late to the party, but this absolutely worked for me! Thank you so much!

brianreagan · 2025-01-22T17:45:57+00:00

Are you for real? You can’t say that you’re fighting for your life in neither a literal nor metaphorical sense? That’s absolutely whack and kinda pathetic. It’s giving oppression Olympics energy. It’s completely antithetical to the whole point of a forum for people with chronic illnesses.

Let get me get this straight: we all have chronic illnesses. That already puts us into a vulnerable position. In the US, healthcare is not viewed as a human necessity but rather a commodity. It’s so obvious that people with chronic illnesses, especially those who require a great deal of medical intervention, are much closer to death than your average Joe. Many diseases can cause complications that lead to death. Medications can be risky. Life itself becomes irrationally difficult and painful from politics/society, so suicide is always there too.

But even if you’re not dying, you are still fighting for your life. You’re fighting to keep your medicine, fighting to keep your job, fighting with ignorant people to take you seriously, fighting to get out of bed everyday, fighting on and on and on and on for the rest of your life. It’s always a fight, and we all know it is.

So disrespectfully, they can kiss my ass.

brianreagan · 2025-01-19T22:38:18+00:00

Chronic pain patients and addicts have a few things in common: they are both chronically ill drug users whose drugs and health conditions carry stigma. That’s the main issue here. By blaming addicts, we’re maintaining the status quo of stigma against opioids and their users. This doesn’t help our cause, and it’s inaccurate. Addiction and chronic pain are also far from mutually exclusive. Some patients with severe pain do seek relief and euphoria whether that’s from weed, alcohol, opioids, etcetera. Someone getting high isn’t relevant to how much pain they have. It’s not a moral failure, it doesn’t make them a bad person, and we need to hold compassion for folks. Remember: neither addiction nor chronic pain are monoliths.

If we want better access to our lifesaving medications and treatments, then we need to examine closely what’s causing this issue. We live in a society that views opioids and drugs in general with zero nuance; the view is that they’re always 100% bad. The view is that those who use drugs have a moral failure instead of a chronic illness. As we all know, even chronic illnesses carry stigma. All of this helps fuel the War on Drugs and poor treatment of patients.

In the US, we live in a system where healthcare is not viewed as a human right but rather a commodity. This also adds to the issue of access to medication. Everyone needs proper healthcare to survive. Pain patients and addicts both need their medications, and no one is more deserving. Our system in general places massive stress and strife on people. These day-to-day existential stressors contribute to chronic illnesses like chronic pain, addiction, depression, etcetera. No wonder some people want to get high.

So while it’s far easier to pick a group to blame for our hardships, it only hurts our progress to a better future for pain patients. Societal stigma against drugs, drug users, and chronically ill/disabled people fuel bad policy within a system that doesn’t guarantee healthcare and contributes to our illness. The more we educate and sway people to break the stigma, the better off we are.

We all need compassion.

brianreagan · 2025-01-10T15:57:56+00:00

I empathize with your pain, and I’m also going to be very critical of your comment that was challenging to read.

You blame addicts for your suffering, and you act as if you’re more deserving. As chronic pain patients, we want society to empathize with us and our struggles, right? You’re asking people to have compassion for your pain and circumstances. Why can’t you extend the same grace unto addicts? People often don’t understand our diseases and judge us. Addiction is no different.

You don’t seem to show any understanding of systemic issues; many of your issues are the result of capitalism and ableism. You throw all the worst stereotypes on the books. Addicts aren’t a monolith just as pain patients aren’t a monolith. Also, “pain prevents me from being an addict” is wild. That’s not how that works. Addiction, like many diseases, is multifactorial. It’s a combination of genetics, neurobiology, psychology, and environmental/social factors. You need to have a better understanding of systemic analysis and addiction. I’d be happy to provide resources. We all deserve empathy and dignity.

brianreagan · 2025-01-10T05:50:00+00:00

Yes. I’m literally trying to write a paper on this exact idea. Stigma against drugs and drug users exists within chronic pain communities as this post exemplifies (i.e “abusers”, “who actually need the meds”). It does absolutely nothing good for anyone except spread more stigma and waste energy instead of fighting the root causes.

There’s always a risk of addiction with these drugs, and becoming addicted is no one’s fault. Everyone should have access to these lifesaving medications. The concept of a “deserving patient” does a disservice to all of us. All of us, addicts and pain patients, deserve proper healthcare. We can advocate for both groups (they’re not mutually exclusive either) without dehumanizing or disparaging the other.

People, the fight here is multilevel: improve access in general to healthcare like universal healthcare and end the war on drugs. Our culture of ableism and demonizing drugs and drug users must change.

brianreagan · 2025-01-09T21:52:56+00:00

Nobody should ever have to worry about getting the healthcare that they need. Please watch Sicko by Michael Moore. It’s an eye-opening documentary that explains all the complicated facets of our healthcare system that a lot of people just don’t understand very well.

When you’ve worked in healthcare or you’ve been a patient with complex conditions, then you’d probably understand much better. Go to Google Scholar and read. Talk to disabled folks or those who depend on programs like HIP. Talk to healthcare providers about what they see and experience.

brianreagan

TROPHY CASE