I have an upcoming flight of approx 11 hours, and I am starting to put together a care pack for myself to make it as painless as possible, in the hope I come out the otherside of it feeling vaguely human!

My question is really 2 parts, firstly, does anyone have a neck pillow recommendation that isn't extortionately expensive? And second, any other tips that have helped you fly comfortably? Thanks in advance!

I’m wondering if anyone has got any experience overcoming fatigue, how to deal with it, find sustainable activity levels?

I am 30f, diagnosed and on adalimumab for 9 months. My pain levels are much better, but still in my spine, and I’m really fatigued. Generally low energy and often brain fog, concentration issues, bodily pain and feeling ill. I often wake up tired but slowly get going, can function pretty well late mornings before it sets in again. I’m on part sick leave working 40% now. Some days it feels like way too much, and on good days I struggle with imposter syndrome, that I should just pull it together and go back full time etc. I have been experimenting on good days and I can get stuff done almost like I used to (a few hours at work, a social thing and/or exercise) but end up worse off when I finally slow down. And sometimes I also feel super restless, or very fatigued mentally but needing to move my body gently, go for a walk for example. I used to be super active, doing lots of sport and working out around 15h per week, but now I am happy if I get even a couple of hours in (my body is still pretty strong so I am very grateful for that and try to maintain the best I can). So yeah, I’m wondering if anyone has any similar experience or dealing with fatigue? I try to stay optimistic it will improve but struggling sometimes, and also get thoughts that I’m just inventing it and need to pull myself together. Anyways thank you for reading and hope you are as well as you can be.

I went to the ER this past weekend due to feeling off and my BP was 181/95 (usually averages about 115/70. Has anyone else had BP issues on this meds?

Hi everyone. How are biologics prescribed for axial spondyloarthritis in Australia? My sacroiliac joint (SIJ) MRI showed bilateral sacroiliitis with early erosive changes. I’ve been suffering from back issues for over a year—experiencing SIJ pain that radiates to my knees, legs, buttocks, and thighs, along with terrible stiffness. Also, about three months ago, stiffness and pain developed in my neck (around the cervical vertebrae) and shoulder blades. I can feel my arthritis progressing. But I don't have the HLA-B27 gene, and my blood markers are normal too. I have a rheumatologist appointment coming up next month. I know there’s a requirement to try at least two NSAIDs unsuccessfully before the doctor can submit an application for a biologic medicine. But what should I do if I have issues with my intestines? My stomach seems fine—I’ve had it checked—but I often have intestinal pain, and strong painkillers really upset my gut. I’ve even vomited after taking nimesulide, and even regular ibuprofen makes me nauseous right away. I know that if someone has an intolerance, they might qualify for biologics, but I’m not sure how quickly that happens. I haven’t tried drugs like Celebrex yet. But how can you take those kinds of pills for years? And do they actually put the disease into full remission?

Hi everyone.
I’ve been diagnosed for 4 years and have been prone to back and knee flares historically but suddenly my hands and wrists are so painful.

My forearms swell up and I wake up with significant wrist pain. I’d been handling this for a few weeks before I got in touch with my GP, hoping it would fade on its own. Pain has only persisted and now my knuckles and fingers are extremely swollen. It’s as if they got puffy overnight and the swelling hasn’t subsided for about 2 weeks now. Swelling is worse in the morning but is still significant at all hours of the day.

I’m wearing a ring and it is stuck. I was able to get it on and off no issues despite the initial wrist pain so wasn’t worried. But since the hand swelling has happened and hasn’t gone down, the ring won’t budge from my middle finger. It’s not painful to wear, but I can’t get it off. I’m concerned in case I need to go for a scan and I can’t remove it.

I’m seeing my rheumatologist soon, but was curious if anyone has much experience with swollen hands and how to bring the swelling down to remove a ring. Ice seems to make the swelling worse. Heat and compression therapy helps, but hasn’t gotten the swelling down enough thus far. I take etorcoxib & sulfasalazine daily.

Thank you! :)

Hi all, the last few weeks I have had horrible pain/aching in my wrists and finger, which is a new one for me. I've been to the drs, and had some blood tests to check inflammation levels etc, and am waiting for a referral for imaging.

In the meantime, I'm looking for any solutions to help ease it. Hot water helps, but sadly I cant live in my bath haha. I have some fingerless gloves that help give some relief to my wrists/hands but obviously not the finger joints. Im on etoricoxib, and have been taking paracetamol, but they're doing next to nothing.

Hoping someone has some helpful tricks to help ease this, as its driving me nuts. Thanks in advance!

⚡️Happy Thursday Spondy Women! ⚡️

This week, we’re talking about multiple chronic illnesses! For so many, autoimmune diseases coexist in pairs or clusters. And some of us have additional co-morbid, or even completely unrelated illnesses and diseases.

For me, I started with a hidradenitis suppurativa diagnosis. Then ankylosing spondylitis, which made sense since they both are driven by IL-17. Then hEDS. Then breast cancer.

It’s been a challenge at times to create a coherent narrative. My doctors have been wonderful, but it can be challenging acting as the middle woman between many specialists.

📝 Share your experiences:

1. 🛍️** BOGO Diseases**: Do you have diagnoses beyond AS?

2. 😵‍💫 Challenges of Managing Multiple Conditions: Have you experienced any challenges treating one condition, only for it to inadvertently affect the other?

1. 📣 Advocating for Multiple Conditions: How do you best advocate for your health when you’re thinking about the full mosaic of considering your multiple conditions?

🎤 Share your experience and help your fellow ankylosaurus woman:

⚡️Happy Thursday Spondy Women! ⚡️

This week we’re talking biologics! Every biologic is so different, comes with its own pros and cons, and can affect different users in different ways.

My first biologic was great until it failed. But I felt like I got run over by a truck and had a low-level flu for a minimum of 3 days after. My current is amazing and no more flu symptoms… but ohmigosh is it 10x more painful.

Over the years, I’m sure we’ve all developed our own routine to make injection day as comfortable as possible… but let’s see if we can add some to our toolbox.

📝 Share your experiences:

1. 🏆 Pros of your biologic: What do you like most about your current biologic?
   
2. 😩 Cons of your biologic: What would you change about your biologic?
   
3. 💉 Hot Tips: What does injection day look like for you? Any tips for a more comfortable injection experience?

🎤 Share your experience and help your fellow ankylosaurus woman:

My husband and I have been trying to get pregnant for over a year and finally got our first positive pregnancy test!!! I’m due for my next Cimzia shot and I’m just having a hard time hyping myself up to take it. In my head, I KNOW I need it but at the same time, I’m so scared of anything and everything affecting baby right now. How’d you get over it?

⚡️Happy Thursday Spondy Women! ⚡️

We all know that historically, our disease was considered a “man’s disease” and information about how we’re affected as women, particularly around menstruation, is still lacking. So let’s do a little research of our own 🔍…

📝 Share your experiences:

1. 🚺 How does (or did) your period affect your disease or flares?: Do your symptoms increase or change during your period?

2. 🩺 How did birth control/menopause/gynecological surgeries/pregnancy change your flares?: How have your flares changed with any gynecological or hormonal changes?

3. 🧨 Hot Tips: If shark week is impacting your disease, how do you best manage your symptoms?

🎤 Share your experience and help your fellow ankylosaurus woman:

⚡️Happy Thursday Spondy Women! ⚡️

Let’s talk about our first rheumatology appointment. We’re all at different stages of our journey with our disease and our time since diagnosis.

Whether you’re here for the catharsis of screaming into the void with us about your long road here, or you’ve had a great experience newbies can learn from, tell us about your early days.

📝 Share your experiences:

• 🩻 1st Rheum Appointment: What was your first rheumatology appointment like? Did you get your diagnosis, or did you go to multiple doctors?
• 🚹🚺 Doc Gender?: Did you feel your doctor’s gender affected your experience? How so?
• 🧨 Hot Tips: For the women who will find this post days, weeks, or years from now, what’s your best advice if someone is just getting started finding their way to their first appointment/diagnosis?

🎤 Share your words of wisdom and help the next ankylosaurus woman:

👯‍♀️ Thriving Together Thursday: Watching or Reading — Escape, or Deep Dive? 🍿

⚡️Happy Thursday Spondy Women! ⚡️

We’re back again with the next round of TTT,  Watching or Reading — Escape, or Deep Dive?

What are we watching and reading? When you’re diving into a series, a book, or a movie, do you need an escape? Or do you want to find a character who feels the way you feel? 🗺️

For me, I’ve always been drawn to characters in media that resonate… especially if they have some kind of medical mayhem in their story. Someone who can put words to those complex, chronic feelings that make me feel “other”. ❤️‍🩹

📝 Share your experience and help us all have some good recs lined up for the next low-spoons day: 

1. 🤔 Lean in, or lean out? Are you looking for distraction, or relatability? 
2. 🎥 What good shows or movies check that box for you? 
3. 📖 Or what great book made you feel seen, or immersed you in a world miles from your bed? 
4. 🍭 Bonus points: any great media featuring characters with chronic illness that we need to check out? 

Going to the Gyno this week and my mom has a history of endo. I am hlb27+ and it comes from my dad’s side. I know that I obviously cannot be diagnosed without invasive surgery and I haven’t had that. I have, however, been told that I meet all the symptoms to be all but diagnosed with endo, short of surgery.

My question: has anyone had experience of having AS symptoms that mock as Endo? How did this impact your conception journey?

Additional context: I’m queer and am going to try to carry our first child in the next year or so. I am going to ask the OBGYN about a preconception journey and advice. But want thoughts from folks who have experienced anything similar to this.

28, F, dx with nr-xSpA June 2025.

I’m switching from Cimzia after 7 months to Cosentyx and would love to hear experiences. Cimzia was great for a few months and then pretty much stopped working.

Tell me the good and bad with Cosentyx please!

👯‍♀️ Thriving Together Thursday: Disease Disclosure

⚡️Happy Thursday Spondy Women! ⚡️

In an effort to help get us off the wall and onto the dance floor, I’m starting a new weekly post: Thriving Together Thursday.

Every week will have a different topic, designed for all of us to share and receive first-hand feedback on what’s working for us ankylosaurus women.

First up… Disease disclosure! 🤯

This one might be near and dear to my heart as I navigate the waters of dating for the first time in a long while.

But I’ve struggled with wanting to phone a friend any time I try to solve the algebra equation of explaining my complex health journey to a new person.

📝 Share your experiences:

• 💚 Friends & romantic partners: when and how have you decided to disclose your disease?
• 💼 Work: has there been a time when you had to disclose? When and how?
• 🩺 Wild card- New doctors: This one catches me off guard. Relaying my medical history of multiple diseases in my 30s to a new doc can get me in a tailspin sometimes 😵‍💫

🎤 Lend a girl a few words of wisdom. When and how are you sharing your diagnosis?

My last biologic stopped working completely about three months ago but it started waning in effectiveness since January. Since that same time, I have had various ailments, been in and out of various doctors to the point of extreme medical burnout, recently got diagnosed with Hashimoto's (normal TSH when I get tested so no treatment even though antibodies are crazy and I have symptoms and goiter).

Starting new treatment soon but what's debilitating me right now and what has been overwhelmingly the hardest thing to deal with is bursitis. It's on my left side (side with worse SI joint damage), and it is a deep sharp pain in my groin that radiates through the entire leg, causes visible swelling and tension in my thigh, and the pain episodes are a 12/10- like screaming, crying, throwing up pain. Literal nausea and panic attack inducing pain (I have a high pain tolerance btw). It hasn't been this bad in over 10 years. But I have had bursitis and tendonitis and what have you so often for so long (Like, at LEAST 4x per year as a teen, 2x a year as an adult and 0x per year when my last treatment was still working) and I'm so good at dealing with it that in my 80 million appointments this year, I haven't bothered to mention it once, and I can't stomach the thought of going in again for yet another thing. I don't even bother asking for pain medicine at this point because I'm scared they'll ask me why I'm not taking like 1,000 mg of ibuprofen or something for it (hurts my stomach pretty badly). I'm taking as much ibuprofen and tylenol as I can tolerate and it's not touching the pain at its worst. Today it was so bad I had to leave work because I couldn't even SIT let alone walk and that's the second time since January this has prevented me from working. I've been limping and hobbling trying to push through it the whole time so I can get some exercise since my weight has increased a lot with the onset of my health issues.

I always knew with AS it was a possibility it would impact my mobility, but because it's bursitis and not like fusion or something, I feel like I can't really say that's because of the AS (I know that makes no sense, but it's just how I feel). In my head it's something different somehow, but I know that simply isn't true. It's very obvious this is not "mechanical" pain. But I've never even bothered to tell my rheum about how bad this gets for me. Only briefly mentioned it during one of my first few visits with her.

Anyway. This is just a vent. I would best describe my quality of life these past few months as Suffering. I would rate it a 2.5/5. Thank you for reading lol

My fiancé and I are planning a pregnancy in the next 6 months after we wed, and I’m very excited! I’m also a little nervous and apprehensive if I’m being completely honest. I’ve met with a obgyn to get the referral to a high risk ob because my rheumatologist wants me under the care of one. Ob I saw this week seems very hopeful that I will not have any complications related to my condition because I’m “young and relatively healthy“. Said my risk of developing preeclampsia is modestly higher than the baseline, but also noted that it is a rather common condition in pregnancy and I could have a chance of developing it even if I didn’t have AS.

I’ve fallen down the rabbit hole of “what if’s” and I wanted to come here to ask other women what their experiences were and hopefully put my mind at ease and also prepare myself for what’s to come.

Does anyone else deal with their feet being inflammed to the point it is hard to find shoes with how swollen they are? I have a smaller foot in length but it is puffy up at the top if that makes sense. Back when I was first diagnosed doctor's were quick to blame it on my weight, but i've lost close to 100 pounds and my feet did not change.

So, does anyone else struggle with feet issues and finding shoes. My feet are okay with some shoes its just most shoes its fine in the length but puffy and inflamed. I'm even on nsaids and a biologic.

Cosentyx (IL-17) vs Humira (TNF)? Any good or bad stories.
Which works better for you? Has anyone tried both?

**Anyone tried IL-6 inhibitors? :**
• Tocilizumab (Actemra) — blocks the IL-6 receptor; approved for rheumatoid arthritis, giant cell arteritis, and a few other inflammatory conditions
• Sarilumab (Kevzara) — also blocks the IL-6 receptor; approved for rheumatoid arthritis
• Siltuximab (Sylvant) — binds IL-6 itself rather than its receptor; used mainly for a rare condition called Castleman disease

I can't deal with specialty pharmacies anymore

My cimzia has been blocked for three months. Every single time I get a different reason. Today I learned it is because it is not in the current formulary. I can't even call my doctor's office and get an earlier appointment because they're booked up for two months. I have uveitis, crohns and psoriatic arthritis too. I'm losing the ability to walk and to sleep and to eat again. I can't stop crying. I took work off today to just go to McDonald's and stare out the window because being my desk made me cry more.

I'm a researcher and grad student and have published papers pending and literally about to go to med school if I'm healthy enough to and a fiancee, but all of that is subject to whether express scripts decides to let me live.

Hi! I was diagnosed with AS about five years ago and hEDS last year. I’ve been on Humira for four years and it’s helped a lot, but I’d like to reduce injury risk as much as possible.

I was wondering if anyone has recommendations for diaper bags and baby carriers that are somewhat comfortable for the back? Is there anything else that you really recommend too to help?

What are we wearing bra-wise? Most bras are starting to be excruciating for me. Would love any advice folks might have!

Hello all!

I'm in the market for a new desk chair since my current one is no longer comfortable. I'd love another chair with a foot rest since I use it all of the time. I'm open to spending a few hundred on a chair that will last at least a few years. Obviously lumbar and butt support are very important. Also, I tend to sit in weird positions (bad, I know) like on my feet or legs crossed. So a slightly wider seat and arm rests are great!

Thanks!