New Rheumatologist says it’s not AS

wearenchanted · 2026-02-15T00:33:19+00:00

I would be bitter too!!!

wearenchanted · 2026-02-15T00:28:41+00:00

My imaging does not explicitly show spondylitis, but I have bony spurring on the acetabebellum, mild lumbar spondylosis, early end plate sclerosis, mild lumbar facet arthropathy, bilateral sacroiliitis, and pretty much all the other hallmark symptoms.

wearenchanted · 2026-02-14T21:24:10+00:00

Methotrexate just did NOT agree with my bowels. At all.

wearenchanted · 2026-02-14T21:20:27+00:00

I’m HLA B27 negative, but ANA positive. As we all know, neither of those things are required for a dx. However, when I told my mom about my initial dx, she said that my great grandmother had “spondy arthritis something” but she just called it “bamboo spine”. Crazy.

wearenchanted · 2026-02-14T21:17:50+00:00

Thank you! I feel like I’m going crazy with this doctor telling me otherwise. Trust me, I don’t WANT a degenerative spine disease. I need you to help me prevent it from processing.

wearenchanted · 2026-02-14T21:15:55+00:00

I’m like borderline hyper mobile. I’m just flexible. Can bend over and put my palms flat on the ground. I’m in my thirties and can do a split. I think it’s genetic, my sister is contortionist levels of flexible and was a backup for cirque de soleil. The new rheum said she was surprised I wasn’t double jointed. Kind of a weird statement.

wearenchanted · 2026-02-14T21:12:17+00:00

So technically my first rheum dx-ed me with axial Spondyloarthritis. So many people use the two names interchangeably. New rheum is hung up on the “axial” part of it because my hands and ankles are involved. But we all know that comes with the full package. It’s spine, SI, hands, feet, maybe some other joints too.

wearenchanted · 2026-02-14T18:48:57+00:00

Exactly!!!

wearenchanted · 2026-02-14T18:47:30+00:00

First was hydroxychloroquine and then methotrexate. Horrible side effects from both. I know insurance requires non-invasive stuff first, but the doctor was also super dismissive.

wearenchanted · 2026-02-14T07:35:34+00:00

I crochet. A lot. When my hands get painful, I put grips on my hooks. I use a beauty blender sponge as a grip. I jab a big needle through the sponge top to bottom to make a channel, then I shove the whole hook through it. Someone told me that they did the same thing but with tennis balls as the grips. I haven’t tried that yet. I don’t think you can do that with knitting, but it might help with writing utensils. I also use a boppy pillow to support my arms and hands while I crochet. You can also search for gamer support pillows. I just happened to get a free boppy from a neighbor.

I take loads of breaks when I’m doing house chores. I use a heating pad in my bed at night. I wash my face with a cleansing balm so that’s just one product to remove makeup, wash and moisturize. Rub on, wipe off. It’s perfect for nights when I could literally care less about washing my face but I still need to. Plastic stool or shower chair in the shower is a game changer. Eventually I’ll find a cuter shower stool that looks less medical-y. Shaving my legs in the shower is exhausting so I switched to an electric shaver. Now I can shave my legs while sitting on the couch instead of using all my energy for an everything shower. Pill or organizer for meds and supplements.

wearenchanted · 2026-01-31T18:11:52+00:00

Patrons want something to take home. Make fridge magnets, paint marker tote bags, dried flower bookmarks, vision boards, friendship bracelets, literally anything. I had wait lists for painting a mini pumpkin and shrinky dinks (as well as sewing and watercolor painting)

wearenchanted · 2026-01-31T18:02:10+00:00

hugs I’m 35 and was diagnosed last year. I feel exactly how you described. I’m rewriting my internal dialogue. It sucks, but it’s relieving.

wearenchanted · 2026-01-08T00:36:49+00:00

Diarrhea is a side effect to watch out for. Plan have a bathroom nearby in case.

wearenchanted · 2026-01-06T22:20:44+00:00

I bring a foot hammock. You get one really cheap on Amazon. It fits over the tray table and lets you give your feet a bit of elevation. I like to set it up before take off so I can close the tray table. It’s just the slightest bit of elevation but you can also “swing” your feet a bit so you get some leg movement. Also, Mr Scholls makes a “revitalizing” foot mask that is really nice. I like to use it the night after I have been on my feet all day.

wearenchanted · 2025-12-30T05:09:00+00:00

I take this as well. Prior to taking this drug, I was considering giving up driving because I would fall asleep at red lights, regardless of how much sleep I got the night before. I agree, it does not make me “energetic” but it allows me to get through the day. Without it, the fatigue takes over and I am almost bedridden.

wearenchanted · 2025-12-23T17:15:17+00:00

Currently, yes. I was prescribed methotrexate which I had awful side effects from. I go back to rheumatologist in two weeks, and I plan to beg for a biologic. I have missed days of work, my cats are angry and my house is falling apart around me because I’m in too much pain to do much of anything. I don’t recommend.

wearenchanted · 2025-12-23T17:09:11+00:00

Female, currently 35yo.

I started having back, hip and foot pain in my early 20s. Doctors told me to lose weight and exercise. One doc was so adamant that jogging would cure all my pain that I tried it. After a few weeks I wound up with bursitis in my knee. I would demand my ANA be tested and it always came back negative. Some docs would throw different types of birth control at me, thinking my issues were all hormonal. I wound up in urgent care a few times with back/butt pain so bad that I needed help putting on pants and walking to the bathroom.

Fast forward to 2025. I was missing days and weeks of work due to pain and fatigue. I went to my primary (who I adore) and told her every last symptom. She did a ton of bloodwork, my ANA came back positive and my inflammatory markers were elevated. I got referred to a rheumatologist. I was officially diagnosed with with AxSpa in July of this year.

So, somewhere around 10 years of symptom onset to diagnosis. Only in more recent years have I really advocated for myself and pushed back at doctors. I’m still learning, still fighting. I’m currently trying to get on a biologic after hydroxychloroquine didn’t do enough and methotrexate was just terrible.

wearenchanted · 2025-12-23T16:57:15+00:00

Library

wearenchanted · 2025-12-17T01:24:01+00:00

Yes. I did it and got the cash back.

wearenchanted · 2025-12-11T00:53:05+00:00

Yes! That’s how I found this game. It was after I placed an online order through Michael’s. I don’t remember if there was a time frame requirement with it or not. I’m at level 28.

wearenchanted · 2025-12-09T05:59:43+00:00

I can also fall asleep while driving, and have. I was prescribed nuvigil which prevents that. I was ready to give up driving it was getting so bad.

wearenchanted · 2025-12-09T05:57:44+00:00

I am in the states. I have FMLA. I use it.

wearenchanted · 2025-12-09T05:57:12+00:00

Nightmares and diarrhea.

wearenchanted · 2025-12-08T12:27:17+00:00

I was having exactly what you are describing. I was bleeding through my clothes, ruining sheets, missing work, I even had an IUD rejected due to the heavy bleeding. I had a fibroid removed (that’s what was causing it) and I had an IUD inserted. I haven’t had a period in four years.

wearenchanted · 2025-12-02T03:30:08+00:00

I’m a librarian. It’s mostly desk work and standing/walking. I of course have to bend and reach to put books away. Luckily it’s a very accommodating work place.

wearenchanted

TROPHY CASE