Whats working for you guys?

Been sick this week and with that comes some body aches, one of those being my lower right SI top red area.

lower right SI

Saw on tiktok some weeks ago that while sitting, if you use your hands to push your knees together while also using your legs to spread your knees apart that you can get some pain relief. Gave it a shot, went at it pretty hard, and immediately felt a very noticeable amount of relief when I stopped.

For inner hip joint pain

I've done another while laying on my back, slide my feet closer to me/my butt where I'm laying with my knee's point up (picture someone doing a sit-up) , and I sway my knee's together left to right, slowly increases the distance they sway over time. This sometimes takes 10+ minutes to loosen everything up. Youll know when to stop.

Pain in lower back 3 years and recently the pain is in the upper neck too(1 month).. Started taking tofacitinib 11 mg ... recently started neck pain is very bad..and it doesn't go away even after 10 days starting meds ... if I go swimming or badminton I know I will get much more relief but wanted to check if this med is effective so didn't go for swimming and badminton...

I have high CRP (4) but normal ESR. My doctor wants to recheck it in 2 months. He doesn’t seem concerned but I am freaking out. Should I change my doctor?

Good morning! I'm suspected for AxialSpA, I've got MRI in 3 weeks. I'm worried that it won't show anything, I've been brushed off for so many years and all tests "came back clear". But I wanted to ask about your experience. I have symptoms in my back, but my hips are much more problematic. One of the symptoms for the "inflamatory back pain" is "waking up in the second half of night with pain". And I do wake up almost every night, around 4 with pain. But mainly with hips pain. I can feel some stiffness in my back, but these are hips that wake me up and won't allow me to fall asleep. Can that be connected to AxialSpA? Or it means that it's probably something else? I just need some answers :(

As of now (20 days in), my new mattress, the Endy hybrid, hasn't alleviated my lower back pain, a discomfort I've been experiencing for over a year (originally diagnosed as sciatica but now manifesting as general back pain, particularly pronounced in the mornings).

Before I send back to return the mattress and explore other options (it is indeed comfortable), I'm curious about your experiences with how long it took for a new mattress to provide relief for your back, if at all. I'm pondering whether I should persist until the 100-day mark or if any improvement would have been noticeable by now. While I had hoped for a miraculous solution, it's plausible that no mattress will alleviate the discomfort, but I'm eager to hear your insights!

I should note that my previous mattress was a decade old, and I suspect that its sagging contributed to the pressure on my lower back. While I do feel more supported on my new bed, there hasn't been any discernible change in my level of discomfort.

Hey folks, I started bio a year ago in addition to daily Arcoxia. Although I'm in a better place right now I constantly suffer from back pain/fingers inflammation. Do you think thats normal? I'm not sure whether I should try different medication further or that pretty much best possible outcome already?

Has anyone been diagnosed with this?

I was browsing through the AS thread and saw these 4 peptides mentioned with respect to autoimmune arthritis - TB500 and BPC 157 and CJC 1295 and thyson alpha 1.

Has anyone ever tried using one or any others? What was your experience?

I (22M) am HLA-B27 positive and seronegative with severe spinal (and associated areas) arthritis, hot flashes and fatigue but a troubling symptom I have is a hot head, usually with no fever but sometimes with, that makes it hard for me to focus on reading when I used to read a book a day. It is also just uncomfortable in general and can be painful during flare ups. Just wondering if anyone has experience anything like this.

Anyone have pain other than SI joints?

I have the standard SI joint and hip pain but also have had severe costochondritis (chest pain), calve pain, ankle pain, wrist pain, piriformis syndrome. All just come and go. My doctor says I just have tendonitis along with my AS and can’t explain the other pains. Been on a few different biologics but I still get random pains not joint related and doc wants to treat the AS first.

Hello all, newbie here. After dealing with a host of pain and issues on and off since adolescence (now 41) my rheum is suspecting that I may have AS based on some x ray abnormalities. Currently awaiting an MRI for confirmation. I am also seeing a neurologist, abs have had incidental MRI findings of multiple white matter lesions. Does anyone know if AS (or the anxiety associated with it) can cause the lesions? I have been cleared of MS, and it is very difficult to find much information on the effects AS has on the physical brain. Any input you can spare would be so deeply appreciated. Thank you!

So I after about 6 years of going through Doctors in Mexico I finally found a good one that did the necessary tests (positive HLAB-27 and MRI for the pelvis) to confirm that I indeed have Ankylosing Spondylitis when putting everything together. He recommended taking care of this where I could get insurance because the treatment is expensive. so I come back to the US and I of course have to get everything done and when she got the MRI I do not even know if she saw herself or only read the letter that it comes with because that is what she did with the one from Mexico which I thought was unprofessional but she ended up rejecting the diagnosis and wants to send me to an Orthopedic Surgeon for further inspection. I made a new appointment with my old Doctor and I will take my new MRI and see what he ambas to say!

I think I am just venting at this point but has anyone encountered with a rheumatologist that just doesn’t help or doesn’t believe you can have something?

My insurance just switched me over from Humira. Has anyone else started taking this and experiencing any side effects? I’ve felt like crap the last week

Hello, I’m 24 years old and one day at work 7 months ago I started having pain in my SI joint. This pain is brutal and is still there daily throughout the entire day. Then about 3 months ago I started having foot pain that has now been diagnosed as plantar fasciitis, tendinitis and a partially collapsed arch. After numerous doctors I was finally suggested to go to a rheumatologist. Here I found out I am HLA-B27 positive. I then got an MRI of my SI joints, but those are said to be normal. My inflammatory markers are also low. Also, I have not seen much improvement from NSAIDS or my anti inflammatory diet I’ve been now doing strictly for a month. Currently I am out of work due to the pain I am having daily. I truly feel hopeless, defeated and exhausted from the daily pain. I am also researching and learning more about Non-radiographic ankylosing spondylitis. I feel as though I identify with this, but unsure that a doctor would officially diagnose me. Any help or insight is appreciated! Thank you. Also if anyone lives in the DC/VA/MARYLAND area and knows a rheumatologist that is well versed in this disease, a recommendation would be greatly appreciated!

Wanted to know what you do for a living and does AS affect it in some way

Anyone here have axial spondyloarthritis despite their SI joint MRI being negative for sacroiliitis?

How many here have dry eye disease on any form?

It seems quite common with auto immune disease. I found out recently that unknown to me I have severe MGD (gland dysfunction) with 100% atrophy in one eye. I never had issues until after I was diagnosed with AxSpa. It's funny how when you have a disease so overwhelming like AxSpa, everything else takes a back seat as AxSpa eats up all your attention.

I have so many specialist now 😩

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Does anyone have experience with dactylitis that they’d be willing to talk about? I’ve been having intermittent hand pain since February, it came on pretty quick, and it becomes so bad sometimes I can’t even hold something in my hands. I’ve also had a bad flare of uveitis recently so I know things with my AS are potentially unmanaged at the moment. My thumbs and index fingers are primarily affected but sometimes it’s the whole hand. I would love to hear anyone’s experience with where you experience pain, what it feels like, etc. because I see my rheumatologist next week and I don’t want to bring it up if I am not at least 80% sure I may be dealing with it (she’s new to me and I have a lot of medical trauma). Thank you in advance!

Has anyone's AS pain started in their 50's ? How are you dealing with extreme pain, fatigue , anxiety and depression ? Are you still able to work ?

I started taking the new drug Cosentyx for AS.

Two weeks later, I'm in excruciating pain with stiffness everywhere...even new joints are hurting.

I've never had pain so severe that 2400mg of Advil is ineffective.

I'm so stiff, rib pain, neck pain...super painful.

Is this normal?

Hey guys, never really made a post on any board like this before but I’m curious to hear your thoughts. I’ll start by saying i have not been diagnosed with this, i happened to be looking up symptoms for something else and came across ankylosing, but the more I looked at it the more familiarity I had with its symptoms. Since i was about 13-14 (now 20) ive had bad hips, effected how i ran/gait, how fast, lots of pain. Went to the drs then and had all types of different diagnosis’, bursitis, overuse, sprains etc. Had some physical therapy but i was like 14 and i wasnt going to do my daily stretches everyday lol, all seriousness tho they didnt really alleviate any pain. To go along with the hips the ive always had heel soreness sometimes to the point i cant walk on it for a few days and knee issues to the same extent. That pain deep inside the glutes usually on right side but can transfer which makes it hurt to sneeze or cough when they do hurt. I also know i used to have 20/20 vision, i definitely dont now and saw that eye trouble was also a common symptom. Drs expensive n i dont like to complain especially when it feels to no avail and i didnt necessarily know if i was being believed either so i stopped reporting after about 15. Id mention low back hurts pretty bad from time to time as well. I live in midwest and problems seem to subside in the summer and ironic enough i have a vitamin d deficiency. However i take vitamin d daily and still feel same pain, it just comes and goes as it pleases, as theres times in the winter i feel perfect. Another few things I’d add is I weightlift, and theres periods (about every 2-3 months) where just one of my wrists will ache terribly and it changes my whole workout for about 2 weeks, but as i said earlier mainly i feel the pain in my legs, so when my legs do feel fine i’ll hit them, but about a week after doing so they ache terribly and walking a real issue😭when i say legs im mainly talking about hips knees heels. I went to dr recently for just a wellness check and brought it up, but she told me that if I were to have it I wouldnt be able to walk at all. I didnt pushback but didnt think thats exactly the case, as from what Ive read in here most people note how it effects how they walk, myself included, only completely debilitating in extreme cases. Ive dealt with it for awhile now so its just something ive came to live with but I was just wondering what your guys opinions are!

Had my second dose Friday, it seems that I just get wiped out for 3-4 days after injection.

Is this just a coincidence?

Does it settle down?

I created AffordMyRx.com to help people find financial assistance. Hope it's helpful! I'm focused on helping people with chronic conditions (I myself have AS). Let me know if there are other programs for AS I should add!

Hello everyone,

I just had my 5th monthly dose of Simponi. From February onwards I noticed that my energy level was getting lower and lower. Until I was completely exhausted three weeks ago. Right now I can't even walk my dog ​​around the block. I have called in sick at work. I was wondering if this could be from the Simponi and if others have experienced this?

Thank you so much!

Has anyone else with AS had problems with pain in one arm from the right shouldeblade to the back of the arm and the bottom of the forearm? It’s awfully painful

Do you guys feel that it’s difficult to describe the pain/tightness in your lower back/SI joint? I swear mine moves around all the time, even alternating sides. Sometimes it hurts to walk. Sometimes it’s angrier than normal and hurts to touch, other times it’s just achy and tight. I think the lack of consistent symptoms makes me wonder if it’s even AS.

I feel so crazy each time I go into a doctor’s office, because I’ve only been able to ‘catch’ one episode of point tenderness over the SI joint in the last 3 years. If it wasn’t for my iritis, I feel as if I’d have nothing to show.

Hopefully the Humira helps

Hi! A recent youtube video with an interesting/informative overview of AS therapies and future perspectives. Enjoy!
https://www.youtube.com/watch?v=Yr3iImqKLk4&ab_channel=RheumNow

Help! Mattress recommendations! When I was first diagnosed I got a temper - pedic because I couldn’t stand any kind of touch on my body. Now I feel there is just not enough support on my back and hips, and need something firmer! Suggestions please!

I (26 f) am severely lactose intolerant I also have Gerd and I have adhd and autism so textures gross me out is there anything that I can eat that's gonna help with my condition